What Is a Migrainous Stroke? Recognizing and Managing This Rare Condition

Migrainous stroke, also known as migraine-induced stroke or migraine infarction, is a rare and serious complication of migraines, particularly migraines with aura. While most migraines do not lead to a stroke, understanding the risks, symptoms, and treatment options is crucial for stroke survivors and caregivers.

What Is a Migrainous Stroke?

A migrainous stroke occurs when a migraine, typically one with aura, triggers an ischemic stroke—a disruption of blood flow to the brain. This condition is uncommon but can have lasting effects if not treated promptly. Migrainous strokes are more likely to occur in younger individuals under 45 years old and are often linked to specific risk factors, including hormonal influences and genetic predispositions.

Who Is at Risk?

While migrainous strokes are rare, certain factors can increase the risk, including:

• Migraines with aura: These migraines involve visual or sensory disturbances before the headache phase.
• Female gender and age under 45: Women are more prone to migraines with aura, particularly during hormone fluctuations.
• Smoking and oral contraceptive use: These can increase stroke risk in women with migraines.
• Underlying health conditions: Conditions like hypertension or a patent foramen ovale (PFO) can elevate risk.

Symptoms of a Migrainous Stroke

The symptoms of a migrainous stroke can overlap with those of a severe migraine or an ischemic stroke, making it important to seek medical attention if symptoms persist or worsen. Key signs include:

• Sudden and severe headache, often unlike typical migraines.
• Neurological deficits: Weakness or numbness, typically on one side of the body.
• Vision disturbances: Loss of vision, blind spots, or trouble seeing on one side.
• Difficulty speaking: Slurred speech or trouble understanding language.
• Loss of coordination: Trouble walking or maintaining balance.

Note: Unlike migraine aura symptoms, which are temporary, stroke symptoms persist and can result in long-term deficits.

How Is It Diagnosed?

Diagnosing a migrainous stroke involves thorough medical evaluation, including:

• Neuroimaging: MRI or CT scans to detect brain ischemia or infarction.
• Medical history: Details about migraine patterns and aura symptoms.
• Exclusion of other causes: Ruling out conditions like blood clots or other types of stroke.

Treatment Options

The treatment for a migrainous stroke includes managing the immediate stroke symptoms and addressing underlying migraine triggers. Common approaches include:

1. Acute Stroke Treatment:
   • Thrombolytic therapy: Used in ischemic strokes to dissolve clots if identified early.
   • Oxygen therapy or medications to manage pain and stabilize neurological symptoms.
2. Preventive Care for Migraines:
   • Medication: Beta-blockers, anticonvulsants, or CGRP inhibitors to reduce migraine frequency and severity.
   • Lifestyle adjustments: Managing stress, maintaining hydration, and avoiding known migraine triggers (e.g., specific foods or environmental factors).
3. Stroke Recovery and Rehabilitation:
   • Physical therapy: To regain strength and coordination.
   • Occupational therapy: To adapt to challenges in daily life.
   • Speech therapy: If language or swallowing difficulties occur.

Actionable Steps for Stroke Survivors and Caregivers

1. Recognize early warning signs: Any persistent neurological symptoms during or after a migraine should be treated as a potential emergency.
2. Act fast: If stroke symptoms are present, call emergency services immediately. Timely intervention can prevent long-term damage.
3. Seek specialized care: Work with neurologists and stroke specialists to create a personalized treatment plan.
4. Monitor migraine patterns: Keep a headache diary to identify triggers and warning signs of complications.
5. Adopt preventive strategies: Regular exercise, stress management, and a healthy diet can help reduce the risk of stroke.

Living with a Migrainous Stroke

Survivors of migrainous stroke often face challenges like visual impairments, sensitivity to light or noise, and fatigue. Support from caregivers and a strong rehabilitation plan can make a significant difference in recovery. Remember, every stroke journey is unique, and progress takes time.

Migrainous strokes remind us of the importance of acting quickly and staying vigilant when it comes to migraine symptoms. Whether you’re a stroke survivor or a caregiver, understanding this condition empowers you to make informed decisions and take steps toward a healthier future.

If you’ve experienced migraines with aura or suspect a migrainous stroke, consult a healthcare provider immediately. Early detection and treatment are key to better outcomes.

Living with a Migrainous Stroke: Helen van Hooft’s Inspiring Journey

Discover Helen van Hooft’s story of resilience after a migrainous stroke, offering hope and inspiration to stroke survivors everywhere.

Highlights:

00:00 Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit
07:16 Emergency Room and Initial Diagnosis
14:20 Migrainous Stroke Diagnosis and Hospital Admission
26:30 Impact of Stroke on Daily Life
35:07 Adapting to New Normal
59:45 Adapting to Life Post-Stroke
1:23:57 Reflections on Resilience and Spiritual Growth

Transcript:

Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit

Bill Gasiamis 0:00
Hello everyone, welcome to another episode of the Recovery After Stroke podcast. If you’re looking for a guide to navigating life after stroke, check out my book ‘The unexpected way that a stroke became the best thing that happened. It’s filled with practical strategies, inspiring stories and insights that can help you on your recovery journey, you can find it on Amazon or at recoveryafterstroke.com/book. Today, we’re diving into an incredible and deeply inspiring story with Helen Van Hooft, my grayness stroke survivor and spiritualist.

Bill Gasiamis 0:38
Helen’s journey through a rare and challenging condition has shaped her perspective on life, resilience and the importance of living authentically. Helen’s experience as a spiritualist adds a unique layer to her story, offering insights into how connection, introspection and self discovery have played a role in her recovery. Whether you’re a stroke survivor, caregiver or someone seeking inspiration, this episode is sure to resonate deeply. So let’s jump in and hear from Helen Van Hooft. Helen Van Hooft, welcome to the podcast.

Helen Van Hooft 1:16
Thank you for having me, it’s nice to meet you.

Bill Gasiamis 1:18
Nice to meet you too. Tell me a little bit about what happened to you.

Helen Van Hooft 1:24
Well, it was a bit of a lead up on the 29th of April, I started to to have a massive migraine, I was working, and in the middle, well, coming to the end of what I was doing, and I had a massive pain go at the back of my head, and I sort of came downstairs because it was pandemic, and I came downstairs, my husband took a look at me, and something wasn’t right. It was say in inverted commas, usual for me to have a migraine at a certain time of the month and I had that, but it didn’t really go away.

Helen Van Hooft 2:25
And I tried to power through, I guess, and I said to him it’s sort of ramped up. So it was my, again, usual pattern of behavior to have a shower and take himself to bed and then he wouldn’t normally see me for, I would say, about 12 hours, I’d sleep it off. This time within, I’d say, I don’t know, an hour or so, I came back down, I was agitated, I was pacing, I was in a lot of pain. And he looked at me, he said ‘Something’s not right. I said ‘No, I know something’s not right, pain. And I was sort of clenching my hands.

Helen Van Hooft 3:20
I was pacing my feet, my toes were curling, and he just took a look at me, I just couldn’t settle. So he phoned, sort of the Dutch equivalent of like, their help lines or medical helpline, and they were talking, can’t really remember too much, describe my symptoms and asked what the pain was. Now, I’ve had four children so I can tolerate pain, and I was in it was ramping up, and it was going quickly, and I said ‘It’s about eight. She was like ‘That’s not good. So she was like ‘She vomited. And he was like ‘No. And right on cue.

Helen Van Hooft 4:24
I was sick, so she was like ‘Get to the hospital now I don’t like her symptoms.Just by sheer thought, I said ‘I think we’d better take a bucket with us. And lucky enough that getting me in the car, he had to help me into the car, get me into the car, just the movement of that car as we had to go up a slipway onto the main road. Well, you can imagine what happened in that car, and we were very thankful that I had bought the bucket and we arrived, he just sort of my husband. My children have always teased him that he’s a bit of a granddad driver.

Helen Van Hooft 5:22
And that day, I think he wasn’t. And we arrived, and I was very dramatic as I arrived in the accident and emergency department, because I collapsed as soon as I arrived in the accident and emergency. I can’t remember too much, but they sort of obviously bundled me up, because, as I said, it was pandemic, they sort of bundled me up. And what I can recollect was a nurse was trying to put a mask on me, and I got very agitated, because I have a very sensitive sense of smell, and I can clearly recall the sense the smell of vomit.

Helen Van Hooft 6:15
And so I was ripping this mask off, and I can remember, I don’t know whether it was a doctor or nurse, just saying in Dutch ‘Just leave it, because that was getting on my nerves. By the time I came back round, I had all manner of examinations, including CT scans and I think, I don’t know if it was MRI anyway, I can’t remember, but there was no tumors or bleeds or anything into my brain, so I had completely gone. And I’d had a near death experience, and all sorts of stuff had happened, but it was still not clear what was happening, other than when I’d come back round.

Emergency Room and Initial Migrainous Stroke Diagnosis

Helen Van Hooft 7:16
It was saying ‘Can you describe the level of your pain? And I said ‘Well, put it this way, if I had a knife, I would be driving it into my head right now, and she’d be like ‘Ah, okay. And the panic in the room it was still not clear at this point what was going on, no stroke of being diagnosed or whatever. And they kept me in overnight, and by the afternoon, then that the next day, everything was quiet, there was nothing going on. I was completely calm, clear, and they said ‘We can’t do anything. Nothing is showing nothing, it was like nothing at all. It happened.

Helen Van Hooft 8:08
So the only thing that they could do was send me home. It was completely bizarre. So off I go home, though I was scared, my husband was scared because it was lit so frightening, and they sent me home with painkillers. You know, instructions, obviously clear instructions, if this happens again, this is what you do. You don’t mess around, because this is completely unknown, you know, they’d kept me on oxygen to preserve my brain. You know, they were very, very cautious, the level of care was unbelievable, and they were just completely flummoxed.

Helen Van Hooft 9:01
And within 20 minutes of being home, happened again. Didn’t know, and my husband straight on the phone. So they and obviously he was scared, and all they could do say, you know, give her the tablets, knock her out and see what happens. So that’s what we did, and I’m out for the count.

Bill Gasiamis 9:34
And that’s just to get the pain managed and to get you through that part.

Helen Van Hooft 9:40
Yeah, and to because there’s nothing, at this point, they don’t understand what is happening, they’re questioning whether it’s these hideous if anybody listening has them, what they call cluster migraines, where they come.

Bill Gasiamis 10:03
Let’s take a quick break here, before we continue with Helen’s powerful journey and her reflections on resilience and spiritual growth. I want to remind you about resources that can help you in your own recovery journey. Firstly, my book ‘The unexpected way that a stroke became the best thing that happened. Is packed with insights, practical strategies and inspiring stories on post stroke growth.

Bill Gasiamis 10:29
It’s available on Amazon and at recoveryafterstroke.com/book. Second, if you’re looking for a more guided support, check out the courses available at recoveryafterstroke.com/learn. These narrated video lessons are created by a stroke survivor for stroke survivors, designed to help you take actionable steps in your recovery. Now, let’s get back to the interview.

Helen Van Hooft 10:55
And they come with such a ferocity that it is this, you just feel like your head is going to explode and you I’m not a dramatic woman. Yes, I have some dramatic flair, of course, but I’m not somebody that’s going to scream and be hysterical or anything like this, but this pain in my head, my goodness me. It was just I could have, literally, like I say, stabbed my head, I could have just thrown myself off a cliff, it was just unbelievably unbearable. I couldn’t and they could see how my hands, my feet, I my legs. I was just agitated all the time, I just couldn’t do anything.

Helen Van Hooft 11:55
And I would hold on to my husband, and I would just squeeze so they were and what they do with cluster migraines is they put you on oxygen. And what they have learned in the medical profession that to give you oxygen once you’re having a cluster migraine is that the cluster migraine responds to oxygen after about 20 minutes, it wasn’t responding. So what they could then counter, what they could realize that it wasn’t cluster migraines, but to keep me on oxygen was to preserve my brain, because they had no real knowledge of what was happening.

Helen Van Hooft 12:50
So this pattern started to repeat for 10 days and what then, because of, I guess, pain and whatever, I started to collapse. So paramedics then would be called to my house because I would collapse, and obviously that’s not good. The paramedics came gave me fentanyl to relieve me of pain. And because then I would respond, the pain would go and I would come out and be sort of compos mentis, and they were like ‘We don’t know this is and it’s this pattern.

Helen Van Hooft 13:42
In the end, I got I like, I just could feel within my body, and my husband was like ‘This is not good. And I could have this sense within m, I just felt like I was on this steam train heading towards something not good, and I just felt like nobody was they were listening, but not. Do you know what I mean?

Bill Gasiamis 14:15
Yeah, they were hearing you, but they weren’t getting the message.

Migrainous Stroke Diagnosis and Hospital Admission

Helen Van Hooft 14:20
They were, yeah, hearing me, but not really listening, it’s like, something’s going to happen. Because this isn’t right, it’s not responding but and it’s not going away, and I can’t live my life in bed, you know?

Bill Gasiamis 14:42
And in the end, it was diagnosed. This is, hopefully you can help here, this is the weird part is diagnosed as a migraine, migraines stroke, which when I look at on Google, it says, migraine stroke, also known as a migraines infarction or migraine induced stroke, and it is an uncommon complication of migraine, identified by ischemic stroke on neuroimaging that corresponds to prolonged aura symptoms in a patient with migraine. So in the end, they have identified it, they have given you that particular diagnosis. How long did it take for them to get there?

Helen Van Hooft 15:34
Well, as I said, this pattern continued for 10 days, and it was horrendous. I know, I remember one day my eldest son came home to just to see me and gave me a hug. And in that hug, it instantly happened like it just, it would come on like a sledge hammer hitting my head, and it’s just so traumatic. Anyway, we booked this an appointment at the doctor again, and it was a young doctor. She was ‘Yeah, and she sat and she listened to the story and and she said, I can see you know, you’re upset, you’re traumatized. And I said ‘Yes, because this shouldn’t be happening.

Helen Van Hooft 16:36
This there’s something not right, and she said ‘Okay, I’m going to send you for an MRI, I’m going to see what it and I’m going to do that today. And she phoned a colleague of hers at the hospital, and she said ‘And you’re, you’re going to leave here and you’re going to go. And she did, so off we check back to the hospital, and I walk in fine, but obviously husband and I are quite anxious, because we know that this thing can happen at any time, and so they take wheel me down for an MRI.

Helen Van Hooft 17:23
I go in fine and as they wheel me out, I’m sat with my head and my hands, and I’m rocking so the the noise of the MRI has triggered one of these episodes. So it’s all hands on deck with the like the accident and emergency team, and they’re like ‘What, what on earth we do with the the oxygen? And so they can see it in full effect. They can see how immediate it happens, and they’re like ‘Okay, what? What do we do? You know, they’d sort of giving me sort of pain, and this, that and the other.

Helen Van Hooft 18:15
So they take, they admit me to the ward, and I think that’s on the Friday, so I’m on the ward, and then on the Saturday, because it’s almost like, each time what I forgot to tell you Bill, each time they are calling, like stroke, because there’s like stroke, like symptoms, how I’m doing it, because of, they’re going through that stroke check, you know, with the yeah and the fingers, how many fingers and, and I can remember, I’m getting a bit agitated with with it, because it’s constant what they’re doing.

Helen Van Hooft 18:59
I realize it’s precaution and, and it’s care and, and I’m every time they’re like, mm, because there’s symptoms that I’m showing that they’re not too happy with. And then it goes, and then it’s back again, then it goes, and so they’re and then on a Saturday, there’s a young there’s two nurses that come in the room, and it’s a young chap that’s in his nurse’s training. And I don’t know what time it is, and I’m going through the process again, and I know that they’ve woken me up, so I’m not really I’ve obviously slept a long time, and and he’s at the end of my bed.

Helen Van Hooft 19:55
And like, clearly, something’s not quite right, and he they’re doing the stroke check, and they’re like, am I? And he’s going, he’s asking me a question, and I can remember, they said ‘How many fingers am I holding up? I’m like, what fingers is that? What I’m at? What fingers? He said ‘Helen, are you telling me you can’t see my fingers and that I can’t even see you? I can hear you. He’s like and I called it, and I’d had a stroke, wow, and I had a right occipital, in fact. So all of the occipital, right occipital is completely wrong.

Bill Gasiamis 21:02
And the MRI confirmed it.

Helen Van Hooft 21:07
So that was on the Saturday, on the Tuesday, because it was a national holiday on the Monday, so or the consultant and everything was away on the Tuesday, they will to me down and take me in three MRI.

Bill Gasiamis 21:26
Alright, so an ischemic stroke, apparently, according to me and my knowledge, perhaps I’m wrong, is where there’s a clot of some sort, some kind of a blockage in the blood vessel.

Helen Van Hooft 21:44
No clot, but that it was a block.

Bill Gasiamis 21:48
Blocked from something, or has it retracted and instead of being round, it’s flat or something?

Helen Van Hooft 21:57
Don’t know? I can’t answer that question, because I think my neurologist when she when she told me on the because I’m still under the care of my neurologist, because I have a chronic condition called status munosis, so that’s a permanent, untreatable migraine as a consequence of all of that she’s she just it’s all to do With all of the pressure that was there that caused the blood to go into the right occipital of my brain.

Bill Gasiamis 22:53
Okay, so sounds like some kind of a just like a lack of blood flow, more than anything, caused and by the by the immense sort of pressure caused by this migraine has impacted negatively the ability for blood to flow to the right occipital lobe, and that caused A headache. Did it cause other symptoms to your body, like any type of deficits that you felt physically, the stroke?

Helen Van Hooft 23:30
Yeah, I have left sided weakness I have in my left eye, so my eye itself is healthy, so I’ve been I’ve had lots of tests and investigations with the like the Dutch equivalent of the Royal Society for the blind. So my eyes, in particular, my left eye is completely healthy. So it’s the brain obviously, we know once blood gets to the brain, that’s it, it’s dead.

Bill Gasiamis 24:18
The eye is healthy. A lot of strokes of eyes actually might not be aware that when they have deficits in the eye, it’s not the eye, it’s the neuronal connections to the eye are not there because there’s damage there, and therefore it’s a cause of, well, say, somebody has blindness because of a stroke. It’s it’s a different kind of blindness, because it’s not the eye that’s the problem. It’s computer.

Helen Van Hooft 24:45
The brain is the computer, so it’s bit, so all of that occipital it is completely gone in my brain. My eyes rely completely on the left side to work. I have a visual impairment, so on my left, I can’t see, so to the left, it’s like there’s a line in my vision. So when I’m home, obviously I’m in a familiar surrounding, so my memory feels in that blank so I can effectively see I know what I’m doing, but should things change then I’m a bit scuppered, and there’s an example of that, like last night.

Helen Van Hooft 25:57
There was a pair of shoes because they were left on the mat where they shouldn’t be, and because they were unfamiliar, I didn’t see them, so I tripped over them, because they shouldn’t be there. So I didn’t see them, so I tripped over them. So when I’m out and about, I’m more vulnerable because I’m in an unfamiliar place, so I’m having to see and move.

Impact of Migrainous Stroke on Daily Life

Bill Gasiamis 26:36
Much more head than normally.

Helen Van Hooft 26:40
Yeah, so in my home, I’m okay. Now this stroke has left me very light sensitive, very movement sensitive and very noise sensitive, because it’s a migraineous stroke. So anybody that has migraines know how sensitive we become, so I have to live with that all of the time. Like you say, a left sided weakness as well, I used to be very, not very, but I could get very aphasic when I’m tired and lose my words fatigue, that’s a, I think, a general thing when you’re stroke.

Helen Van Hooft 27:38
And with that fatigue, you can sort of get emotional and irritable and things like that. That’s less so, which I’m fortunate about, but I can get tired.

Bill Gasiamis 27:53
Again, according to the internet, the occipital lobe sits at the back of the head and are responsible for visual perception, including color, form and motion. Have you had any visual perception issues, color issues, form and motion issues, motion.

Helen Van Hooft 28:16
If especially motion. I’m so grateful about not losing my color perception, because color is a big thing for me, I’ve told you about vision, but motion. I’m really, really motion sensitive. So if there’s a lot of movement around me, my only way of coping with that is closing my eyes. So there’s a loss of independence, because driving was a big thing for me, and obviously I can’t do that anymore, because over here in the Netherlands, also we have cyclists, there’s that’s a big part of their culture, and along the side of the roads there’s lots of waterways, and to help manage the water in this country.

Helen Van Hooft 29:28
There’s also a lot of trees. So the the trickery of the light, the sun coming through the light the trees, and in the summer, with all their leaves and things in the wind, when that blows and plays with the light on the cars is things like that I’ve learned how the the light refracts. My brain can’t cope with that, so I have to close my eyes. Now, if you’re driving a car.

Bill Gasiamis 30:07
It’s not a good idea to close your eyes.

Helen Van Hooft 30:09
Yes, no. And also with when it’s raining and you’ve got the windscreen wipers going, so you’ve got the rain coming, windscreen wipers and the lights of the oncoming cars. My brain can’t cope with that either, and the only way I can cope with that is to close your eyes. So I’m a bit lethal if you put me behind a wheel of a car. So it’s all although one of my goals, because I’m good at I like to set goals for me to achieve was to get myself back driving again, and I started.

Helen Van Hooft 30:52
And then all of a sudden I was like ‘Oh, hang on, oh, it was only in doing it did I realize, hang on a minute, I can’t, no, this isn’t good, this isn’t good. So I sort of very I had to sit down and reflect. Actually, no, this isn’t for me, because if I hurt somebody, because I want to be driving. No, I can’t live with that. I’m not doing it.

Bill Gasiamis 31:28
How were you employed beforehand? What kind of work did you do?

Helen Van Hooft 31:32
I’m self employed. So I’m a medium and a coach and a tutor of that.

Bill Gasiamis 31:52
And we were you a self employed medium and coach, etc, who had a practice somewhere that you went to do that work.

Helen Van Hooft 32:01
Well, this was in the pandemic, and because I’m expat as well, so I was working primarily online and building myself back up again. So, yeah, I’m having to do that all over again.

Bill Gasiamis 32:22
I know how you feel, I’ve been there, done that, and still doing that. Had the seven years or so to get back to work. And then that was 2019 and I don’t think I was at work for more than about six to nine months, you know, self employed as well. And then we were in the biggest lockdown on the planet in Melbourne, here in Australia, for nearly 18 months out of 24 and then then the economy goes into nosedive for many, many reasons.

Bill Gasiamis 32:59
And in Victoria, where I live, more so because the economic situation to keep people locked up for such a long time had a greater impact than some other states, and we still haven’t got out of that mess, and people are struggling, you know, to employ people, to provide them services, because the funding is not so good. So it’s been a a real battle for from about 20,000 to 20,000 from 2012 to 2024 to stay afloat, to cover outgoings, to achieve, you know, financial independence, to have people employed.

Bill Gasiamis 33:48
It’s been a massive thing, and it kind of is a little it’s been okay because there’s no overheads. I don’t have an office, I don’t have a factory and a whole bunch of things and massive loans that are out on the business or anything like that. So you kind of scale down, and then you scale up, but at the same time, when you’re scaling down, you’re not earning money. So it’s really tough, right? But it feels like there’s no other choice, like, what do you do? You have to keep finding a way forward.

Bill Gasiamis 34:27
I’m lucky. My wife works so she’s been able to cover the outgoings. But I’ll tell you what it does take a I’m not sure if it’s not emotional, it’s a psychological hit on you, because I’m doing and I’m not doing this much, right, but you know, I have been at my worst times kind of feeling like ‘Oh my god, like men are traditionally the breadwinner and you’re not bringing any money and you’re relying on your wife, and there’s a couple of a little bit of that negative self-talk. A very short amount of time, but still really surprised that it’s there.

Adapting to New Normal

Bill Gasiamis 35:06
And it’s like ‘Wow, you’ve never dealt with anything like this before, have you mate? So you’ve got to work a way through and deal with it. And your wife’s not saying any of that stuff. She’s not saying ‘Why don’t you pull your finger out and give us some more income. She doesn’t do that, but I still have that thing that goes on in my head that many males might relate to, and I suppose other people who are not males, women might relate to it as well. So that’s been one of the biggest battles, and I see it as a setback.

Bill Gasiamis 35:42
When I’ve spoken to people about it, you know, family and friends who thank God, are healthy and well, and they’ve been going well, and they’re achieving their financial goals, amongst other things. You know, it has come up a couple of times where I’ve sort of said, like, this has been such a massive financial setback, it’s crazy. How do you deal with that? How do you kind of get your wrap your head around that part of it?

Helen Van Hooft 36:13
It is hard because you have your own voice in your head, but you also have the medical profession with what they know medically saying you can’t do that, you shouldn’t be doing that, because I’m also studying within what I do. And I remember, as I affectionately called her my brain nurse, and I told her what I wanted to achieve within my mediumship, if you like, and the study there that, and she was like, well, that’s a lot. And then when within that people, because you’ve had a brain injury, they don’t understand it.

Helen Van Hooft 37:20
Because they’ve got no perception of it, and they’re like ‘Oh, are you sure? Oh, are you I don’t. And one person in particular, you know, you can’t do that, she’s not this, she’s not. And you and I, and I think, and the effects, like on my husband, who had a burnout, as it’s called over here, not just because of me. It was a whole catalyst of of stuff that that sort of, I think I was the cherry on the cake. I think you have to take it one day at a time, and the thing that I’ve learned is thoughts are not things.

Helen Van Hooft 38:24
And if you start going down that rabbit hole of your thoughts that I’ve learned to think, get off that you can change your thoughts. You don’t have to keep thinking that thought. And I did it the other day, and a friend of mine, because I started on that track, and a friend of mine sent me a voice clip, and she said ‘I think we need to change our thoughts about that. And I thought ‘Oh, you’re so right. I did it to myself, I did it. She was so right, and her manner in which she said it was like almost quite school teacher-ish, I think we need to change our thoughts about that.

Helen Van Hooft 39:23
I thought, yeah, you’re so right, we do. And I think, Bill, it is our thoughts in our own self perception, and we get so colored, if you can’t, when we were talking about color, but about what we should be doing. We should have achieved that. We should we must do that, I’m a man, so I must have achieved this, and I should be earning that, and yeah, but you’re a man that is.

Helen Van Hooft 39:59
Had a stroke, most important, you know, and so your your life has been shaped and and affected, and all of it, so you’re doing the best that you can, given the circumstances, and you know all credit to you by getting up again and living each day the best way that you can and your best, my best, our Best, is going to be different every single day, and that’s all we can do, is live our best every day.

Bill Gasiamis 40:47
Yeah, you know that guy that says that stuff to me and puts those thoughts in my head, he doesn’t even consider the fact that I’ve had a stroke. That’s how bizarre it is. It’s like ‘Are you like, the same person? Are we different people? Who is it that is saying those things? It’s so weird that person doesn’t even consider the person who had a stroke at all like, you know, I, that version of me treats myself worse than the the people who don’t know I’ve had a stroke, and you know, you don’t look like you’ve had a stroke, therefore you need to respond appropriately.

Bill Gasiamis 41:27
That’s the same treatment that I do to myself when I’m in that headspace. It’s so weird, and it’s like, how do you a do that to yourself? And then also be the same, be living in the same body and still have the ability to take that tone like it’s terrible, but it’s so weird. I try to observe myself going down that path so that I can stop that voice. But it’s such a strong voice.

Helen Van Hooft 41:59
It is, and I think you know people you don’t look like you’ve had a stroke. Okay, tell me what a person that’s had a stroke should look like. Because I remember I told somebody to get out of my house. I think it was probably come that two years ago, because they were supposed to come to our house to assess they came to assess me in order to give us some help and support, because I needed it. I needed my husband works full time. We have three children, well, adult child and two children living here.

Helen Van Hooft 43:04
My adult child is now moved out subsequently, but at the time, you know, working full time, and I would have appreciated some help with the chores and whatnot, you know, and not driving and so we wanted to investigate if that was possible. And so in this person comes, and I could just tell, because of obviously, how I made sensitivity, and this that, and the other, I can get, you know, a bit of a sense of people. And she looked at me, because I’m walking, I can use all of my limbs because I worked hard on my physio and and I have that sort of strength.

Helen Van Hooft 43:59
I’m grateful to to that, and she sort of looks at me, and obviously my face isn’t drooped or anything like that, and I can talk and Mama, and she was asking me these questions, and she she was so judgmental. She said ‘Well, you don’t look like you’ve had a stroke. I said ‘Well, what should I look like? You look too well. I said ‘I have had a stroke, but you’re young? Yes, I was 48 when I had a stroke. Oh, I’ve never heard of this drug, I’ve told you it’s very about lower.

Helen Van Hooft 44:50
And in the end, I said ‘Well, you can leave what I said, you have come here. You are so judgmental, I said ‘You can leave. Well, you’re too well, you don’t need any help. I said ‘I do. I’ve asked for help. I can’t do this, I can’t manage my home, my husband works, you don’t look like somebody, get out you. I said ‘You have no medical training, you are not you don’t know my medical history. You’ve looked at me, you’ve judged me, I don’t need to explain myself to.

Bill Gasiamis 45:42
Yeah, part of it can be excused when that person comes in like that. I mean, it’s complete ignorance, and usually it’s from lack of experience that ignorance. And then there’s other factors, lack of training and all that kind of stuff, and then there’s like, perhaps her job was it an assessment to not supply the help, or was it assessment to supply the help? Like ‘why were they assessing you?

Helen Van Hooft 46:08
Yeah, we had to ask to see if I could perhaps have, like a taxi, because obviously I can’t drive to help me get to a supermarket in the local area, and for a cleaner to come in to help me clean my house. You know, some domestic help I just to maintain some standard within my home, and because she looked at me, and because I can use my arm and my leg, and she said ‘Yeah, I was not somebody that presents classically as a stroke.

Bill Gasiamis 47:15
Yeah, it’s a big problem.

Helen Van Hooft 47:18
And because she’d never heard of the stroke. My brain nurse was sat with me and I was like ‘But if I hadn’t have had a stroke, would she be sat with me? And basically she just didn’t, she didn’t, like certain aspects of it, and the fact that I was able to sort of advocate for myself.

Bill Gasiamis 47:54
Your career would have people not getting you misunderstanding you anyway, normally wouldn’t, they like the general run of the mill, person who doesn’t hire the services of a medium, or who’s not kind of into that world? Would Is it similar the misunderstanding that people have with you, and am I like imagining that misunderstanding is accurate, like, because I kind of sort of see that world that you kind of, you know, like work in as a little bit misunderstood kind of space from the general public. Have I caught something there that’s accurate, or am I just imagining it?

Helen Van Hooft 48:42
I think so. I think if you know if that’s not the circle or the thing people say that they’re into, then I think people have this stereotypical view that mediums can be a bit wild and wacky and a bit out there, and for me, it’s a way of life. I’m a spiritualist, it is my religion, and for me, being a spiritualist is not so much about talking to the dead and communicating to those that have died, It is about living well and helping others to live well and appreciate that we are all. We are all worthy of a good life, and that we are all connected to one another, and that.

Helen Van Hooft 50:00
Should all treat each other, and this beautiful earth that we live on, well, that, to me, is spiritualism and religion, And spiritualism, the fact that, you know, I get a sense of people. I’ve always had that sensitivity about me, and when I started to develop that ability, it strengthened me, it enabled me to understand myself more, and yeah, it brought aspects of myself to the fore that just settled me into myself, and I’m grateful for that and that enabled me, then to understand others and give me a greater empathy for them.

Helen Van Hooft 51:10
And that I’m grateful for the fact that I have an ability that means I can help others or connect to others that are deceased. Just means that I would never force that onto anybody, unless I am they have given me permission to unless I am working on a platform, or they have come to me in a professional manner. I do not advocate or agree with these programs that you see out there where people are accosting people?

Bill Gasiamis 52:05
No, I it’s not where I was going, what I was going, what, where I think you nailed it. You said that you’re comfortable within yourself. You’ve been able to sort of fall into that space as you’ve got to know yourself and understand yourself and your the way that you experience things and people around you, etc, and that seems to be also helping you dealing with this version of misunderstanding that’s happening because you don’t look like you’ve had a stroke, etc.

Bill Gasiamis 52:36
Are those skills transferable in that you know yourself, you know who you are.

Helen Van Hooft 52:41
Yeah.

Bill Gasiamis 52:42
You’re making assumptions, you’re making judgments about me. And what does a stroke survivor look like to you? Like, what’s, what does that even mean? And you have kind of, I suppose you have more of a insight as to how to handle people with kind of screwy faces.

Helen Van Hooft 53:06
Yeah, and I just think that says more about them than it does me. And there’s a book that I read many years ago, and it was a friend of mine that introduced it to me or suggested it to me, and it’s called ‘The Four Agreements by Don McGraw Riez. And I read it, don’t know how many years ago, about 15 years ago, and it was a life changer, and these four agreements were something that I adopted.

Helen Van Hooft 53:45
But it was something that I adopted then, and one of them is ‘Do not assume. So, you know, if you assume anything about anybody then there comes a period at some point that you have to then do the work to unassume everything that you’ve assumed about them, and that takes a lot of effort.

Bill Gasiamis 54:16
Tell me about that. Why does that point come? Why do you have to get to that point where you eventually you have to unas stream everything.

Helen Van Hooft 54:23
Because, it’s easier, instead of assuming something ask. So instead of my, you know, like the other day, my husband said something like ‘Oh, yeah, well, I bet, they did this. I said ‘You don’t know that. He went ‘Well, I bet. I said ‘You don’t know that. That’s what they’re thinking. Well, I said ‘You don’t though, do you? He went ‘No. I said ‘So, when you go to work tomorrow and you ask them, and you’re wrong, how are you going to feel?

Helen Van Hooft 55:09
All of it’s stupid, I said, So, all of this assumption and getting fired up that they’ve done X, Y, Z, and all of this feeling, ill feeling potentially, you’re going to have to unwind that. So instead of just leaving it right now and not feeling anything, you’ve got a whole load of more work to do tomorrow after you’ve asked them. So instead of just leaving it empty, that’s what I mean by assumption. So, in this book, where it says ‘Do not assume, ask questions, speak to people in the first place. So if you don’t know, don’t assume that you know.

Helen Van Hooft 56:00
Don’t jump to an assumption about anybody or a situation, don’t overthink stuff, don’t because when you actually begin to know the truth, you have to then pick everything that you felt or think that you know, or there’s so much other work that you have to do because you have formulated your own thoughts or own conclusion which could be actually wrong, and you could have saved yourself all of that work in the first place by asking a question.

Bill Gasiamis 56:40
Yeah, and the energy and the all of it high blood pressure and the elevated heart rate and all of that stuff, and the anger and the concern, whatever, it’s a profound statement. You know that we don’t realize we’re doing it a lot of the time. People just go down their path, and that’s the thing about people who we come across, who don’t know what stroke looks like, or are ignorant to stroke.

Bill Gasiamis 57:13
They come across, they make an assumption, they get shocked, they don’t know how to respond, and often it just had happens where it’s a little bit uncomfortable, etc, especially if you’re somebody like me, who, when somebody makes an assumption about the way I look or am or whatever, they hear it in a nice way, they get told, and then when they get told, the back pedaling might begin, and those types of stuff, I try not to bring them to that stage, but I don’t shy away from saying to somebody.

Bill Gasiamis 57:51
Well, I don’t know how might you have felt if you had three brain surgeries. You had one brain surgery, three strokes, you couldn’t walk. You had to learn how to walk again every day your left side hurts. But that’s the real thing with me. It’s like my pain is ongoing, and it’s every day, and my deficits on my left side, and that’s the biggest challenge, is like, I go to work and I’m wiped out by sometimes 10 o’clock, and then I’ve gotta still get through that day, and I’ve gotta bring the guys along with me for the ride.

Bill Gasiamis 58:27
And I don’t need them to be seeing me and thinking this guy’s not doing enough, you know. So there’s a little bit of, a lot of explanation to people, put people at ease that, you know, I am pulling my way. I am doing my bit in my own way, the way that I can do. And it’s just, it’s me getting comfortable with just being able to, if I have the opportunity to set the scene, so that once I’ve set the scene, the expectations of the other person are managed, and then once they’re managed.

Bill Gasiamis 58:27
Then it’s an easier conversation on a regular basis, rather than assumptions being made by that other person just through ignorance. It’s the situations where people, where I don’t have that opportunity to let do the groundwork and set the expectations, where people often kind of get caught out by somebody that looks like me saying ‘Hey, no, I’m not well today, you know, and I can’t do what you’re asking. And then trying to get them over the line.

Adapting to Life Post-Migrainous Stroke

Helen Van Hooft 59:45
Why do you I have a question, why do you feel that you are responsible for getting them over the line?

Bill Gasiamis 59:57
So you might not be right or wrong. I don’t know what the answer is to whether it’s right or wrong. However I feel that way, because it seems like it allows me to do less work later, and the way I feel later gets the the negative, the negative side of how I feel later in that assumption like game is decreased, and I feel like I’ve made it easier for the person who’s ignorant a little bit as well later, so that they don’t feel a little bit like not attacked, but like they don’t feel like I’m judging them or something like that. Do you know what I mean? So, I just try and diffuse it.

Bill Gasiamis 1:00:49
I suppose that whole thing that might happen later, you are not responsible for how I know, I know I’m not. It’s just the process that I go through. It’s just sort of, it’s got a lot to do with my upbringing, and it’s got a lot to do with the way I go about my work, and the expectation that when I go to work and I have to deliver an outcome that I need to get paid for it, part of it is setting the expectation how I’m going to deliver that outcome, because people’s idea of how you deliver.

Bill Gasiamis 1:01:23
Especially in my field, like with property maintenance and repairs and painting and all that kind of stuff. There’s a lot of shows now on TV that show in half an hour and a half an hour episode, the guys paint their entire house and bang, and there you go, and anyone can do it, and somebody who’s never picked up a brush before for and they get, you know, the highest rank, and they win a prize, and all that kind of stuff there’s that has impacted our business, because we have to re educate people on how things are done.

Bill Gasiamis 1:01:58
And I’ve gotta do that with my deficits as well doing it before, I could push harder, and I could go through barriers, and we could do extra hours, and we could work Saturdays and Sundays. They’re all off limits now, so there’s strict rules as to how I work, and if I don’t lay those ground rules out. That also includes my stroke sometimes, then I annoy the client, and then that impacts the way that we get paid, the smoothness of the job, etc. So part of that has kind of infiltrated my personal life, because that’s what I do most of the day. And I’ve been doing for 20 years.

Bill Gasiamis 1:02:45
So I come home like the dumb things also that I do because of my work is I’ve come home and I see imperfections in the wall or in the door, in the door and all these weird place and I go to people’s houses and I notice them as well. I don’t say it, but that work has infiltrated my personal life. As much as I try to distance myself from it, I end up going back to that work every day.

Bill Gasiamis 1:03:18
So, you know, it’s a bit of a task, and I’m not perfect as well, like I’m a podcast and I’m presenting the recovery after stroke podcast, but I’m a human and I struggle with the same things other people struggle with. I try and talk about it as much as relevant to each episode. But you know, I’m far from the the standard.

Helen Van Hooft 1:03:43
But we we’re all human, so we’re all in imperfect. That’s what we’re here for. That’s the the experience, the human experience.

Bill Gasiamis 1:03:58
I kind of don’t mind it. It’s I want to make sure that I’m clear that I don’t mind it, but I’m intrigued by and when it happens, I try to observe myself in certain situations that are weird, uncomfortable, difficult, and it’s like that guy before, I like to observe that guy treating my myself in that way, and pretending that you’ve had setbacks and you haven’t achieved your goals, and forgetting that you didn’t have that you’ve had a stroke or two. And you know, I try and play that role as well, like I don’t just I do my best not to sit in the space where it’s impacting me negatively.

Bill Gasiamis 1:04:44
I’m a problem solver by nature, so I love to. I’d love to notice where things can be improved, and always seek improvement for my own benefit, so that your life is easier and I’m more resilient. I’m, you know, going after resilience and adaptiveness, and I’m also trying to become more respondent, and also sometimes unrespondent, you know, when necessary.

Helen Van Hooft 1:05:18
Sure, that’s really important, you know.

Bill Gasiamis 1:05:22
And as a hot blooded Greek background, younger brother of an older brother, not responding is such a tool that I need to learn and master.

Helen Van Hooft 1:05:39
Just because you’re even fighting to a fight doesn’t mean that you have to go.

Bill Gasiamis 1:05:45
That’s right, yeah, I’ve never shied away from any kind of confrontation. I’ve spoken about it with my wife recently, you know, I don’t mind confrontation. She dislikes confrontation. So we kind of, you know, that’s where we get stuck, unstuck sometimes.

Helen Van Hooft 1:06:03
And to one of those doesn’t like confrontation, doesn’t do well with it.

Bill Gasiamis 1:06:14
I just don’t take it personally. I don’t take confrontation personally, whereas my wife and other people I come across might, and I’m sometimes not even being confrontational. I might just be like, very playful, passionate, talkative, loud, whatever. And I get the ‘Why are you yelling? Oh my god, I’m not yelling. I haven’t even started yelling yet. I’m just talking, you know, my hands are going everywhere, and it’s a sight.

Helen Van Hooft 1:06:50
It’s that Greek blood in you.

Bill Gasiamis 1:06:53
Man is and, you know, in my home where I grew up, my dad and my brother, and on my dad’s side of the family, they’re all loud and big and tall and huge and they and that’s just normal. You go into that house and when everyone was around you, just it was loud, the decibels were through the roof.

Helen Van Hooft 1:07:18
Now that would have been no good for my glass head at all.

Bill Gasiamis 1:07:22
Yeah and it’s not good for me now, but I thought I understand, you know, the version of conversation that looks crazy to an outsider who is gentle, non confrontational, listens more than talks. I get it. So, I have my identity is full of my work guy and I, and my identity has expanded since the strokes and all that stuff and evolved. But there’s definitely a lot of that guy that trying to please other people for money, guy that infiltrates my daily interactions sometimes.

Helen Van Hooft 1:08:18
I think it’s tricky when because stroke changes everything and you have to adapt, and not for me personally, allow for it to be everything, that it’s part of of you, but not everything. And for me, it’s like when I had children and ‘Oh, you’re so and so’s mum? No, I’m Helen. It’s, I love being a mum. I have four children, wow, two adults now. And, but it’s not the be all in it, and the end all, there’s so many aspects to all of us as humans. And I think when we grab it one thing to shape our whole identity, we miss out on it, on everything else.

Bill Gasiamis 1:09:36
And it’s so hard later when you’re challenged by stroke, and your identity gets knocked about, and then you’re doing the whole I can’t be a mum anymore, or I can’t pick up the kids from school, and I can’t do that. And it’s like ‘Oh my gosh, that’s one of the things that didn’t catch me off guard, which was great. My identity was is kind of broad enough and flexible enough so that I was still able to be a dad without picking them up from school.

Bill Gasiamis 1:10:06
I was still able to be a dad without taking them fishing and all that kind of stuff. I missed out on fishing, and they would have been lovely to go but I didn’t stop being a dad. I just changed the way I was being a dad.

Helen Van Hooft 1:10:22
Eating it out, finding, cultivating a new pathway for yourself within the challenges that you face. I think that’s really important Bill, you’re absolutely right.

Bill Gasiamis 1:10:36
And then there’s, in my book, there’s a chapter where I talked about the I compared it to the being an empty nester. My boys have both moved out now, and it happened probably, you know, 10 years after the first incident, and they were old enough to move out, so we were kind of getting in each other’s space, where we were living. So it was good, but I missed them.

Bill Gasiamis 1:11:08
I had, like, separation anxiety and all that kind of stuff. But there’s also that empty desk, which is the person who has a job, and they all their friends or their connections, or the people they associate with are all related to their work, and then they either have to retire, or for health reasons, have to stop working or they lose their job. And their identity cops are real, a real knock, and then it’s like, who, if I’m not the guy that goes to work and doesn’t deal in all that space.

Bill Gasiamis 1:11:49
And I haven’t had a hobby, and I haven’t had a gym, or I haven’t had this, I haven’t had like, then who am I? What do I do? How do I interact with the world, and what am I going to talk to everyone else about that doesn’t work in that space or live in that space?

Helen Van Hooft 1:12:05
Yeah, I talked about it last night, I was working on, I have a spiritual community, and we were online last night. I talked about that in our philosophy about going little, sometimes there’s a need to go small and and then going small sometimes you can find aspects of yourself that you didn’t know that was there, and when you go small, because I think society nowadays is demanding us to be big all the time, go large or go home, you know. And but I believe that sometimes when life, or you allow yourself, you have the courage to fall and go small.

Helen Van Hooft 1:13:10
That there’s such a beauty in that, because you allow yourself, like I said, to find aspects of yourself that you didn’t know that was there, because I’ve always been very fiercely independent from a very young age, and obviously the stroke taught me other things about allowing other people to do things for me, not only medical stuff, but my husband had to be my carer for a long time. Every aspect of my well, not every but you know how helping me shower, helping me dress, you know, I had to feed me because I couldn’t even cut my food.

Helen Van Hooft 1:14:04
I remember the first meal after the the stroke, I could see that it was food. I knew it was food, but I couldn’t feed myself, but didn’t even know how to cut my food, you know, I didn’t know what a knife and fork was for. The memory came back when I saw him do it, but I didn’t have the dexterity or the physical strength to do it, you know, I couldn’t brush my teeth. I couldn’t so people had to do it for me. So in doing, allow having to have people do that for me, talk me at things about myself, humbleness, humility.

Helen Van Hooft 1:15:00
But then having my life so little and only being able to do a small amount of things, because you just don’t have that brain energy. You can’t, you know, and if, when people are talking around you, you can’t, you literally can’t compute, and it hurts your brain in the end, people were like ‘Okay to go outside, because you’re like, cool way. So, you know, you learn stuff about yourself constantly.

Helen Van Hooft 1:15:46
The other thing even before that, you know, were you talking about in your own life? You know, being an expat, when I moved from England to the Netherlands, my life became small and little, because my friend group, my work group, my dad did it, all of that. So my life became small. Then you know, so it in you learn things about adaptability, resilience and but in doing things like that, when life becomes small and little, and allow in allowing things like that for other people to show themselves, they grow, and you see them in different ways.

Helen Van Hooft 1:16:47
And I think there’s beauty in that you see yourself in a different way, but you see others in a different way, and you all grow in different ways in that moment, and I think that’s there’s beauty in that.

Bill Gasiamis 1:17:08
Yeah, indeed, what’s the hardest thing about stroke?

Helen Van Hooft 1:17:16
For me, the loss of the independence, to drive, because that was the big thing, and it still is, because it’s limited me, I believe, of being able to get up and do things, and I see how that’s impacted on my husband, because we don’t have a support of a friend net, a big friend network or family, it is just us. So that is, I think, the hardest thing, not being that independent, being able to get in the car go do my grocery shopping.

Helen Van Hooft 1:18:17
Because I loathe the online shopping you know, where they substitute stuff? I don’t want that. I want to be able to choose, and just to be able to take for granted, to be able to go into a noisy place and not be so and not be affected by the noise, the lights and people and people, because everything has to be considered.

Bill Gasiamis 1:18:58
Yeah, that is now. That can be a hard one for sure, I went through that as well, the inability to attend sports events and concerts and all that kind of stuff, and being asked to and not being able to say yes, because I didn’t want to be in those environments for two or three hours at a time, and then probably not going to be fun if I’m there for the other people. So it’s better to just, it was better to stay home.

Helen Van Hooft 1:19:31
Yeah, not, you know, to go sort of to a marquee and, you know, if there’s a disco and this, that and the other that. I can’t contemplate to do that, and even to a restaurant or whatever, that’s a big consideration. What’s that going to be like? What’s the music level going to be like? How many people could be there? A likelihood is, you know, probably about an hour tops. That’s with my special ear loops, my special glasses.

Bill Gasiamis 1:20:13
You know, one of the things I do want to go to a restaurant now is I look up to see if they’ve got acoustic tiles, if they’ve what, if they have a good acoustic setup. That’s another weird thing that I do is I go and check out restaurants and see and if we go one time and they haven’t got a good cruise set up, and the noise is bouncing everywhere, and it drives me bonkers, then I never go back to that restaurant again. We won’t go back.

Bill Gasiamis 1:20:39
So it happens so often, and it’s strange how people don’t take that into consideration just for a nicer atmosphere for their guests. That’s all not even for people who might have noise sensitivity issues, just a regular kind of nice environment for a restaurant, I feel like they need to take more consideration of the acoustics anyway.

Helen Van Hooft 1:21:09
Yeah, I think you know that is there’s always I think in life now, there’s always sort of a trade off. I’m very part of me feels a bit like a an imposter in the in the stroke community, if you like, because I’m very aware that I’m walking, I’m moving. I like to say ‘Yeah, I’m very vain in my face it’s fine, and this and this, and that. But if you put me in a loud environment and whatever I can’t be, I won’t last long, you know. So I know that I’ve had a stroke in this setting. Life is very different, but I am, you know, I can like you. You’ve said, life is very different.

Helen Van Hooft 1:22:16
You have to manage your day, you can do this. You have to be very considered, I’m aware that I can work a full day in my work. I can do a long shift, like yesterday, I worked a long day. I worked a long day on Tuesday, I can do it in my line of work. And I love my work, and I’m very fortunate that I can do it, It’s not been affected. So there are, six of one, half a dozen of the other. And may there’s hope with my neurologist that as I come the other side of the menopause, that may be status megrinosis, goes that I will no longer have this horrible constant migraine every day.

Helen Van Hooft 1:22:21
There’s hope for that we don’t know. So it might get better, but like I said to her ‘If it doesn’t, it doesn’t, I don’t whatever. I’m here, I’m alive, I’m living, I’m doing stuff, I’m whatever. And she’s like ‘Well, don’t you want that?

Bill Gasiamis 1:23:48
You’ll take the win.

Helen Van Hooft 1:23:49
Yeah, I’ll take the win.

Bill Gasiamis 1:23:52
Yeah, what has stroke taught you?

Reflections on Resilience and Spiritual Growth

Helen Van Hooft 1:23:57
So much. I was, I’m always, I’d like to think a positive person. I have my down days. I have, I’m like, we’ve said humor, but I don’t unpack, don’t stay there. I’ve stroke has taught me just how resilient I am. The fact stroke has taught me just how common it is, how you shouldn’t look at somebody and say ‘Oh, they not had a stroke, because they don’t present with the droopy face, with the lint, with the did the because that’s not true.

Helen Van Hooft 1:25:00
That we should all be good to one another, because life changes in an instant. So with people that you love, just tell them exactly how you feel all of the time, and don’t think, don’t assume that you’ve got tomorrow, because that’s not necessarily a given.

Bill Gasiamis 1:25:41
That is very true. What do you want to tell other people who are listening, who are on a similar journey?

Helen Van Hooft 1:25:55
Live well, live life according to what feels good and authentic to you. Don’t allow others to tell you what is right and proper for you. Live according to what feels authentic to you, because people mean well, and they think that they are telling you or that is true for you, but ultimately, you are the one that is the barometer of what feels the best for you. And if you are unsure of what that is, then take a moment, because there’s a Hellenism that I always have, that is, if you are unsure of what it is that you want to do, then do nothing.

Helen Van Hooft 1:27:09
Just pause, breathe, sit with it, and then allow for that, just that silence within you to guide you, because that will eventually tell you where it is that you want to go, because nobody should have autonomy over you. You are the one that knows best.

Bill Gasiamis 1:27:38
And on that note, thank you so much for joining us on the podcast.

Helen Van Hooft 1:27:41
It’s been a pleasure. I’m so pleased to finally met you, Bill. Keep up the good work and be kind to yourself.

Bill Gasiamis 1:27:51
Well, that is a wrap of this incredible episode with Helen Van Hooft, her journey through my grain of stroke and her insights as a spiritualist, remind us of the power of resilience, adaptability and the importance of living authentically, even in the face of profound challenges. Before we go, I want to thank you all for being a part of Recovery After Stroke Community, your comments, support and feedback mean the world to me, and they help us connect with more stroke survivors and caregivers worldwide.

Bill Gasiamis 1:28:27
If this episode resonated with you, please consider leaving a five-star review on Spotify. We are at about 47 at the moment, I’d love to get it to above 50. Also consider leaving a review on iTunes, if that’s where you listen to your podcasts, or hit the like and subscribe button on YouTube. Your support helps others find the podcast and join our grand community for more resources, remember to visit recoveryafterstroke.com. Thank you for tuning in, and I’ll see you in the next episode.

Intro 1:29:01
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:29:31
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Intro 1:29:56
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Intro 1:30:22
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The post Facing a Migrainous Stroke: Helen van Hooft’s Story of Resilience and Recovery appeared first on Recovery After Stroke.

Understanding Venous Sinus Thrombosis: Symptoms, Treatment, and Molly Buccola’s Inspiring Journey

Venous Sinus Thrombosis (VST), a rare but serious condition involving blood clots in the brain’s venous sinuses, can have life-altering consequences. Early detection, treatment, and support are crucial for managing this rare blood clot condition effectively. In this article, we’ll explore the essentials of VST, highlight its symptoms and treatment options, and share the inspiring story of Molly Buccola, a survivor who has transformed her experience into a beacon of hope for others.

What is Venous Sinus Thrombosis (VST)?

Venous Sinus Thrombosis (VST), also known as Cerebral Venous Sinus Thrombosis (CVST), occurs when a blood clot forms in the brain’s venous sinuses. These clots obstruct blood drainage, leading to increased pressure in the brain, which can cause swelling, bleeding, and, in severe cases, stroke. Though rare, VST is a potentially life-threatening condition that requires prompt medical attention.

Symptoms of Venous Sinus Thrombosis

Understanding the symptoms of VST is vital for early diagnosis and treatment. Common symptoms include:

• Persistent or severe headache, often one-sided
• Blurred or double vision
• Nausea or vomiting
• Seizures
• Weakness or paralysis on one side of the body
• Difficulty speaking or confusion
• Loss of consciousness in severe cases

If you or someone you know experiences these symptoms, particularly in combination, seek immediate medical care.

Risk Factors for Venous Sinus Thrombosis

VST can affect individuals of any age or gender but is more common in certain populations. Key risk factors include:

• Blood clotting disorders or genetic conditions like Factor V Leiden
• Pregnancy, childbirth, or use of hormonal birth control
• Dehydration
• Infections, including meningitis
• Chronic inflammatory diseases such as lupus
• Trauma or head injury
• Cancer or cancer treatments

Recognizing and managing these risk factors can reduce the likelihood of developing VST.

Diagnosing and Treating Venous Sinus Thrombosis

Diagnosis

Diagnosing VST involves a combination of medical history, physical examination, and imaging studies. Common diagnostic tools include:

• Magnetic Resonance Imaging (MRI): Often paired with MR venography to visualize blood flow in the brain.
• Computed Tomography (CT) Scan: Helps detect swelling or bleeding.
• Blood Tests: Identify clotting disorders or infections contributing to the condition.

Treatment

Treatment for VST focuses on dissolving the clot, managing symptoms, and preventing complications. Standard treatment options include:

• Anticoagulants: Medications like heparin or warfarin to prevent clot growth.
• Thrombolytic Therapy: Used in severe cases to break down clots.
• Symptom Management: Anti-seizure medications and pain relievers.
• Surgery: Rarely needed, but may be considered if pressure in the brain remains high.

Molly Buccola’s Journey with Venous Sinus Thrombosis

In 2005, at just 21 years old, Molly Buccola was in her final semester of college when she experienced a life-threatening venous sinus thrombosis. Molly’s symptoms began subtly but escalated to a point where she could no longer communicate clearly. A diagnosis of a blood clot in her straight sinus led to brain hemorrhaging in both hemispheres.

Initially misdiagnosed, Molly’s condition worsened rapidly. Thanks to a pioneering medical trial, a neurologist at a local stroke center was able to stabilize her. Molly’s recovery journey included paralysis on her left side, physical, and emotional healing.

Today, Molly channels her experience into creating a supportive community through her nonprofit, Beyond Stillness: Stories After Stroke. Her work emphasizes the transformative power of reflection, storytelling, and connection for stroke survivors and caregivers.

Prevention Tips for Venous Sinus Thrombosis

While not all cases of VST can be prevented, proactive measures can significantly reduce risk:

1. Stay Hydrated: Dehydration can increase blood viscosity, raising clot risk.
2. Know Your Risk Factors: Discuss your medical history with your doctor, especially if you have a clotting disorder or are pregnant.
3. Follow Prescribed Treatments: Take medications like anticoagulants as directed.
4. Seek Early Intervention: Address symptoms like severe headaches or neurological changes promptly.
5. Adopt a Healthy Lifestyle: Regular exercise, balanced nutrition, and stress management are crucial.

Living with Rare Conditions: Support and Encouragement

Living with a condition like VST can be daunting, but you’re not alone. Molly Buccola’s story highlights the importance of community and resilience. Consider these resources for support:

• Beyond Stillness: Stories After Stroke: Molly’s podcast and nonprofit offer a platform for sharing recovery journeys.
• National Stroke Association: Provides resources and educational materials for stroke and clot-related conditions.

Support Groups: Connecting with others who understand your experience can foster emotional healing.

How Molly Buccola Turned Her Venous Sinus Thrombosis Diagnosis Into Hope for Stroke Survivors

Stroke survivor Molly Buccola inspires others with her recovery from venous sinus thrombosis and her mission to bring connection and hope to others.

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Highlights:

00:00 Introduction
02:41 Molly’s Initial Experience with Stroke
04:46 Medical Intervention and Recovery
08:27 Reflecting on the Journey
13:44 Impact of Stroke on College Life
17:15 Exploring Religious Studies and Psychology
26:29 The Role of Meditation and Journaling
31:57 Reflecting on Dark Moments
36:46 The Purpose of Beyond Stillness Stories After Stroke
49:48 The Power of Storytelling
1:23:28 Final Thoughts and Resources

Transcript:

Introduction – Molly Buccola

Bill Gasiamis 0:00
Hello everyone, before we dive into today’s inspiring conversation, I wanted to share some exciting updates and express my gratitude to this amazing community. First, I just noticed that we’ve received 47 five-star reviews on Spotify, and I can’t thank you enough for your support. It truly motivates me to continue bringing you these episodes, I have also been seeing growth on the YouTube channel of the podcast, with more people watching, leaving comments and interacting with the content.

Bill Gasiamis 0:37
It’s incredible to see our community expanding and connecting stroke survivors and caregivers from all over the world, and on another exciting note, I also just realized that my book ‘The unexpected way that a stroke became the best thing that happened now has six five star reviews, and that’s not 47 but it’s amazing that six people have decided that the book deserved a five star rating, and if you’ve read the book and you think it deserves a five star rating, please do go along to Amazon and purchase the book and leave a five star rating for it.

Bill Gasiamis 1:19
What that does is it helps other people who are in need of this type of content to find it. I want to thank everyone who has taken the time to read it so far and share their feedback, it means so much to me. If you haven’t picked up a copy yet, you can find it on Amazon or at recoveryafterstroke.com/book. I also want to remind you about the resources available on My Courses page at recoveryafterstroke.com/learn. These narrated lessons created by a stroke survivor, for stroke survivors are designed to help you take actionable steps towards reclaiming your life after stroke.

Bill Gasiamis 2:01
For now, though, let’s dive into today’s episode. I’m thrilled to be joined by Molly Buccola, a stroke survivor and the founder of Beyond stillness stories after stroke. Molly’s journey began in 2005 when she was diagnosed with a venous sinus thrombosis, a rare and life threatening condition that led to paralysis and intensive recovery. Since then, Molly has turned her challenges into opportunities to inspire and support others through beyond stillness, Molly provides a platform for stroke survivors to share their stories, cultivate connection and find hope.

Molly Buccola And Her Initial Experience with Stroke

Bill Gasiamis 2:41
In this episode, we’ll explore Molly’s powerful journey her work with beyond stillness and how storytelling can be a transformative tool for healing and growth. Molly Buccola, welcome to the podcast.

Molly B. 2:54
Thanks, Bill.

Bill Gasiamis 2:57
It’s so lovely to have you here, tell me a little bit about what happened to you.

Molly B. 3:03
Okay, so it’s been a long time, and I don’t remember most of it, but in college, 19 years ago, the last semester of my senior year, I had slept until four o’clock in the afternoon, and I’m an early riser. Normally, I like to get up and go for a run and and I always chose the morning classes so that I could have the whole afternoon to, well, do whatever I wanted to. So I slept until four o’clock, and my roommate returned home and woke me, and I was speaking words, but the words didn’t make sense.

Bill Gasiamis 3:53
To you or to the other person?

Molly B. 3:56
At this point, I don’t remember any of this, and so to the other person, to my roommate, Annie, she she understood the words, it wasn’t like I was slurring them, I was saying words, but they weren’t in a correct order, and as far as I know, and I stumbled to the restroom and of course, it scared her, so she called my sister, who lived fairly close by. She was my only family member that lived in the state, and she called her sister, who was a nurse, and both of them said, get her to the hospital. So when I arrived at the hospital, they didn’t know what it was.

Medical Intervention and Recovery For Molly Buccola

Molly B. 4:46
I was only 21 at the time, and this is in 2005 and they didn’t know. They tested for a lot of different things, they thought maybe late stage syphilis, like they were throwing anything out there, and they thought maybe I was on drugs, and my roommate was like ‘She doesn’t do drugs. And they were very confused, and then by the time they figured it out I was in a coma, and thankfully, the hospital I was at had just been or was in the process. I’m not sure if they had just been certified, or they were in the process of becoming a stroke center.

Molly B. 5:35
So the neurologist had a monthly or a weekly meeting with neurologists from the area, and they met that evening, they weren’t sure what to do, what they could do, at that point, I had a blood clot in my straight sinus, so I was bleeding into both hemispheres at that point, and Bill, I don’t know the timeline for sure, but the neurologist had a let’s see, there were, how do I say this? Thank God for editing there, one of the neurologists at the meeting worked at another local hospital, and it was too dangerous to transfer me at that point.

Molly B. 6:41
So he drove from Stanford Hospital over to Good Sam and Los Gatos and worked on me there. It was a medical trial, at that point they tried something that had only been tried a few times, and the only person who had ever tried it was out of the country presenting on it. And so that neurologist walked my surgeon through the procedure, and the procedure helped a lot, but it didn’t do everything. So the main clot in the sinus straight was still there. So my family had flown from a state away, flown down to California from Oregon at that point.

Molly B. 7:43
And my family was making the decisions, and they asked ‘Is there anything else they can do? And they said ‘No, we can’t do anything. We can’t do anything except we can transfer her to a teaching hospital. So at that point they transferred me to University of San UCSF, so University of California, San Francisco, which is the teaching hospital, and I spent the rest of my time there and again, I don’t remember any of it Bill.

Molly Buccola Reflecting on the Journey

Bill Gasiamis 8:27
How’d you come up with this story, then you’re not just making it up. Have you been have the gaps been filled in by people?

Molly B. 8:35
It’s a great question. Yes, all of all the gaps that I just mentioned, those are all stories from other people, I don’t remember any of those. Yeah, I started, and similar to you, you have points that you don’t quite remember.

Bill Gasiamis 8:54
Yeah, people definitely filled in the gaps, and now I’m grateful for that, because it kind of makes more, a lot more of a compelling story, rather than I had a stroke, and then I don’t remember anything, and here I am so interesting. Of all the stuff that you just spoke about, the one thing that stood in my mind was syphilis.

Molly B. 9:17
I don’t even know what that is, late stage.

Bill Gasiamis 9:22
Well, it’s for a 21 year old. It’s unlikely to have the to hear the two connected A, B. It’s a neurological disease that happens because of, especially back in the day, promiscuity, and it’s a sexually transmitted disease, and Al Capone died of complications due to syphilis. That’s the only person that I have ever heard of or known about that died because of it, but it wasn’t an issue many, many decades ago. I don’t know how much of an issue it is now, but that’s interesting, isn’t it, that they don’t think about stroke, they think about all these other random things.

Bill Gasiamis 10:10
But when it comes to a 21 year old, one thing that doesn’t cross their mind, or it didn’t then, and perhaps even today, it still happens, stroke is not in the awareness of a lot of people that are treating patients in hospitals when it comes to a 21 year old. Let’s take a quick pause here, just before we dive back into Molly’s incredible journey and her work with beyond stillness stories after stroke. I wanted to remind you about my book ‘The unexpected way that a stroke became the best thing that happened.

Bill Gasiamis 10:46
It’s been making waves with stroke survivors and caregivers alike, offering practical guidance and inspirational stories of post-stroke growt, you can find it on Amazon or at recoveryafterstroke.com/book, and remember to explore recoveryafterstroke.com/learn. For narrated video lessons specifically designed to help you take actionable steps in your recovery journey. Now let’s get back to Molly’s story and learn more about how she’s inspiring the stroke community through storytelling and connection.

Molly B. 11:24
It’s interesting. I’m hearing more about it now, but I didn’t know anyone. Well, I wasn’t part, I wasn’t involved in the stroke community up until two years ago, but I didn’t know anyone especially my age who had had a stroke, and you’re right, it’s a it’s so common that my guess is, in the coming years, the medical professionals will be more on top of it, and they’ll have a it seems like they’re having more and more experience treating stroke.

Bill Gasiamis 12:12
Absolutely, things are well, things are getting better from an awareness perspective, and the fact that there is a specific stroke hospitals and stroke ambulances and whole whole protocols around potentially treating stroke and then the symptoms of stroke are very much in the community. People know what to look like for the majority of strokes, you know FAST acronym has made a massive impact in that area, and it’s very common in young people, and I imagine it would be even more common than syphilis in young people.

Molly B. 12:54
I was like ‘We don’t know we’re reaching, we’re reaching, and even when they weren’t sure what caused it either. And so that was another thing, I work with. A lot of people now that are nervous about another stroke and not knowing what’s next, and for me, I had no idea that that was a common, a common next step, that there’s a possibility that another Stroke can happen.

Bill Gasiamis 13:35
How long were you in hospital? Do you know the details of how long you were in, when you got out and where you went to after hospital?

Impact of Stroke on College Life

Molly B. 13:44
Yeah, so I was only in for, I don’t know, maybe 10, days, two weeks, maybe, I’m not sure the exact extent, and when I left, I was able to go directly, I didn’t. They didn’t send me to inpatient rehab, and so I moved in with my sister, who lived fairly close, and my mom moved down from Oregon to take care of me there.

Bill Gasiamis 14:19
And then college? What happens there? Does it just go on pause? What happens to the life of a 21 year old after they’ve had a stroke?

Molly B. 14:30
That’s a good question that, that’s what I was asking myself. Bill, what now the last semester of college? People are preparing for the next step in life, and so I had arranged to volunteer abroad for the next couple years, and I was set up with an organization, and I was ready, I was so excited, and I had, and after going through such a discernment process on what’s, what’s the next step after college, and weighing all your options, and then you think ‘Okay, I’ve got it. Of course, life throws throws us a curve ball when we think we’ve got it.

Molly B. 15:22
So the next, the next step in terms of graduating, I was at a I was in a fairly small program at a university. I was graduating in religious studies and psychology, and knew my professors pretty well, and so they worked with me on finishing the courses in ways that I could, and I’m very grateful for that. In order to finish on time, even if I’m not going to classes every day, they worked with me to try to figure out different ways to go through that.

Molly B. 16:05
Then again, I’m going through a pretty major life experience, and Religious Studies and psychology are both very central to that life experience. So it was a way for me to reflect on that experience in light of those disciplines.

Bill Gasiamis 16:29
Also, you hear adults like me say, oh, there wouldn’t be anything worse than going to a site I am out of the age of an adult? Yes, that’s a very lovely question, because depends who you ask, they might disagree with my statement about myself. Adults like me, who are of an age of an adult at 50, would often have conversations with people that goes there’d be nothing worse than going into a counseling session and having a kid who’s just qualified as a counselor or has just studied psychology to take you through an issue, because what do they know about life?

Molly Buccola Exploring Religious Studies and Psychology

Bill Gasiamis 17:15
They’ve not ever had any life experience yet, you were 21 and you’re having a dramatic amount of life experience all in a short amount of time, and you’re studying psychology and religion. Or is religion the same kind of thing is? Is it what it was? Are you trying to get a grasp of religious beliefs and different versions of religion. What is that study specifically about? And then I want to talk about how those two topics supported you.

Molly B. 17:54
Yes, so religious studies, the program that that I graduated from, we studied a variety of world religions, and I just think it’s fascinating to this day to explore spirituality and how it shows up in different cultures and different people, and it was interesting how now we have this term, the intersection of but it was interesting how they connected throughout spirituality and psychology, and I believe they’re the basis of humans of connection, and it’s fluid, yeah, so you add a second part to your question. What was the second part?

Bill Gasiamis 18:48
Yeah, how did they support you in the recovery? So you’re dealing with some big existential issues at that age, after a stroke, I imagine, and the the the years that you spent studying religion, or that you did religious studies and and then psychology would have, as you said, like intersected beautifully with what you’re going through, but also provided a 21 year old with a lot more of An understanding about those two topics.

Bill Gasiamis 19:21
And often people dive deeply into philosophical, psychological and religious type of topics after a massive life event. And you’ve done that really, really early on. How does How did they support you? Did they support you?

Molly B. 19:42
I would love to say Bill that that’s a really good question. First off, and I’d love to say that I figured it all out at 21 because I’d gone through this, but really it was probably a new beginning, right? Because you can study concepts, and you can write papers on concepts, and at that point, I my whole heart was in and I believed in him, and I was passionate about him, and then all of a sudden, this happened. I was like, what was that? I thought I had it figured out. And instead of, instead of it making sense to me at that point, I was thrown into confusion.

Molly B. 20:38
And it’s not until now, 19 years later, that I’m actually reflecting back on that experience. Like I said before, I didn’t know anyone and and when I was able to once, I relearned how to walk and to feed myself and to bathe myself and live on my own, I did, and I didn’t talk with other people about stroke because I didn’t know anyone, and it’s a long story, and it’s if people asked me, of course I would tell them, but it wasn’t something that I didn’t know how it all fit, and I’m I definitely don’t have it all figured out.

Molly B. 21:35
Now, I don’t know how it all fits, but it’s brought me back to this beautiful community in which you’re a part, and it’s led me to these inspiring people from all over the world and all walks of life and all ages and economic backgrounds and and cultures and in I’m in awe of the way that everyone moves forward in a different way. I love that takes a little bit what, yeah.

Bill Gasiamis 22:16
That’s so important. What you said moves forward, because that’s the theme of of every person who I’ve had on the podcast is then moving forward scarred, you know, fatigue from the battle with their recovery and from what, what’s happening in their life because of stroke. You know, often dragging themselves along, being dragged by other people, sometimes getting nowhere, sometimes having good progress, dealing with stuff that they never expected to deal with emotions and mental health and physical health and all this stuff, right?

Bill Gasiamis 22:58
And yet, they are moving forward, they are somehow continuing to do that, and that’s what I hope the podcast, my one does is it gives people an insight of where things were and how we’re grappling with them, and Then how we’re moving forward, and that is the hope part of it, right? We’re trying to provide hope and give people a sense of all right, you’re probably doing it tough now, but there’s still movement forward.

Bill Gasiamis 23:32
You will still move forward. When, a little bit earlier, when we spoke about your religious studies, did you go into religious studies with a religion, with an upbringing from of religion, or was there any of that stuff that you had with you when you started those studies?

Molly B. 23:53
Yes, I went to Catholic school growing up, and I was raised Catholic, and I hope my high school religion teachers aren’t listening to this. But I hated my religion classes in high school, but I went to a Catholic University, and part of graduating from the university is you have to take a few Religious Studies courses, I think, three courses, and I left them to my senior year because I didn’t like my religion courses in high school, so I took all three of them the first semester or the first quarter. I think we had quarters of senior year, and ended up loving it.

Molly B. 24:42
I had a a Jesuit professor that made us sit cross legged in the Mission Church every morning at 7am we were like, 7am we go to bed at like, four. What do you mean seven? I didn’t go to bed at four, but as college students, you’re not used to arriving at 7am to a silent place of worship every day of the week, we had to meet there and sit cross legged in silence and meditate for 20 minutes.

Bill Gasiamis 25:23
Wow.

Molly B. 25:23
And he taught us a variety of ways to meditate, and we got to put it into practice. And that was the beginning of my like formal meditation practice, but those courses welcomed me into a the those courses opened a new door for me.

Bill Gasiamis 25:55
They would especially at that age. Not only have you, you know, you’re doing college life, and there’s a bit of studying involved and some partying and all that kind of stuff. But the reality is, at 21 you haven’t really ever woken up to go anywhere at 7am.

Molly B. 26:15
I did love running at 7am and it cut into that schedule.

Bill Gasiamis 26:19
Oh my gosh. Okay, you’re one of those people, I get it, all right.

Molly B. 26:24
I’m one of those people, I know.

The Role of Meditation and Journaling for Molly Buccola

Bill Gasiamis 26:29
So you, you had a little bit of a a leg up, at least, you had the ability to get there and be there. But then you discovered this thing called meditation, which you totally didn’t expect, which was brand new to you, and what an awesome gift to give to a 21 year old, or however old you were when you first started that, right? You know, I think that’s an amazing thing, because I think 21 year olds these days are lacking resources.

Bill Gasiamis 26:57
They’ve got heaps of information because the internet’s full of them. You know, don’t eat this and don’t do that and eat this and eat that and but they actually don’t have tools. I think they don’t have tools that they can fall back on when they need, when they need, when things are tough, right? Did you fall back on meditation through your recovery?

Molly B. 27:18
Yeah, meditation, from that point forward, was a part of my life. I’m sure that it informed my recovery. I’m not sure if I thought of it in that way that this is going to help my recovery, it was at that point I was meditating, I was journaling, and I still am, and that I’m sure that that helped the process. Like I said, I don’t remember many of the months after my stroke, and when I go back and read the journal, I read fairly dark moments, and I’ve always been a fairly optimistic person, and most I don’t know if I give off.

Molly B. 28:29
If I was giving off that I was feeling those dark moments, but to go back and read those meditation could have helped me navigate those thoughts. But I can’t say for sure. I’m not sure Bill, based on we know what we know for Brain Science, it did.

Bill Gasiamis 28:51
I feel like it was your one of those things again, because you’re it was a habit, like a seven o’clock running. If it was just something that you did, then you didn’t reflect on it too much. You just did it, and like journaling, it seems like both of those were actually integral parts of the foundation to your recovery. And you don’t have to know that you’ve got great foundations if you’re doing it and you don’t know that’s even better.

Molly B. 29:20
That’s the hope.

Bill Gasiamis 29:23
So journaling is one of those things that I don’t like to do, just because I tried it a couple of times and I just feel like it’s not the right tool for me. I suppose, for me, the right tool is talking out loud to people and connecting with people and doing it that way. And that’s why I went to counseling, my habit was counseling. You know, from about the age of 25, 26 onwards, it still is. And sometimes I don’t go for many months, and sometimes I go more often. What was it like as I imagine an adult or person that’s of adult age?

Molly B. 30:10
Thank you. You’re doing great to becoming an adult.

Bill Gasiamis 30:14
To look adults. I don’t know somebody like says after it’s, I don’t know when, when illegal things put you in jail. I think.

Molly B. 30:28
Okay. I think we’re adults then, yeah, I’d like to say it’s when someone knights you. You are now an adult to build this Gasiamis.

Bill Gasiamis 30:37
Well, you know, there used to be cultures where, and there still are for Catholic religion, where there’s these rituals that kind of transform people from being a child into this other state. And in ancient cultures, people that lived in places like the Amazon or other cultures where there was traditional ceremonies to transition people into different, different stages of I don’t know. I’m not sure what it is like different stages, I would just leave it at that.

Bill Gasiamis 31:16
You know, the Jewish religions have the bar mitzvah. The Christian religions have the the confirmation and so on. So let’s just say it’s for the sake of the secular world. It’s at the age where, and in every country that might be different, where you end up in jail if you do the wrong thing. Let’s say that now, now that we’ve clarified that.

Molly B. 31:49
That’s not as fun as like a full spiritual cultural celebration.

Bill Gasiamis 31:56
It’s not.

Molly B. 31:56
But I’ll take it.

Reflecting on Dark Moments

Bill Gasiamis 31:58
It’s actually 100% not, it’s just boring and it’s so regimented and it’s so, you know, it’s like a VIN, and then after that day, you totally are, and there’s no more things to do to become an adult. You just reach the age, and it doesn’t mean anything, but at your age, reflecting on those dark times. How do you reflect on those dark times, like when you read the stuff that you wrote, what does it do to you? How do you respond? Do you have to respond? What do you feel for young, 21 year old Molly?

Molly B. 32:38
Yeah, those are really good questions, do you have to respond. That’s a really important one, I hadn’t thought of it like that, it’s like listening to another person and I feel blessed that people have trusted me with their dark moments, and so it feels like sitting with one of those people and holding that space for them, but also knowing that we’re just at one point within this longer journey. And a lot of times that one point is so so painful, and it’s hard to look past that point, but like we were talking about earlier, 19 years later, I look back and I think it all makes sense.

Molly B. 34:01
It’s led me to these people, it’s led me to where I am now. I was able to apply my retreat work, my work at the monastery, my work in schools, all of it to what I’m doing now, and I had no idea when I was doing each of those individual when I was going through each of those individual professional experiences, passions, relationships, all of them. I had no idea that they all wove together in a way that was leading to this moment to be on stillness, and that’s essentially what this is, right when we have a stroke. When someone has a stroke, we’re forced to be still.

Molly B. 35:07
Our body forces us to be still, our mind forces us to be still, our whole spiritual being is still for a moment, and we’re forced to think, what is this? Why? Where everything is confusing and it’s a dark moment, and it’s hard to see past that dark moment. But there is, there is a beyond stillness, beyond the physical, beyond this world. I believe, I think there’s a very big spiritual element involved.

Bill Gasiamis 35:56
You’ve got the proof that there is beyond stillness, because you’ve got the actual recording of that version of stillness for you from back in the day you wrote it down. It was there dark moments and difficult time, and now you’re 19 years post, and you can actually see that distance right that you’ve traversed. You’ve gone from one to the other, and now you’re here, and now you’re reflecting, and you’re going.

Bill Gasiamis 36:27
Wow, I was pretty cool, as in, I didn’t know, but I was doing all these things and that they’re skills that I can superimpose over here and take to the next level with my next project, whatever that project is.

The Purpose of Beyond Stillness: Stories After Stroke

Molly B. 36:46
And Bill, what I’ve found is a lot of the people that I work with in crafting their story for the podcast, we have seven weeks or so that we work together and we have conversations about, yes, the story, but it’s a reflective space. So we go beyond the what we’re writing, the actual story.

Molly B. 37:17
We dive into them as a person, and how they see the world and how their perspective shifted, and there’s so much that goes on to every individual story, and when we’re able to look back on our whole lives and the moment of stillness, we see something different, yeah, but it’s so familiar, because it’s us.

Bill Gasiamis 37:51
What we’ve been talking about, for everyone who’s listening and watching, I’ve obviously, I’ve introduced at the beginning of the episode, Molly and her work. So we’ve got a fair idea of who Molly is before we start the interview, but we’re talking about the podcast, which is beyond stillness, stories after stroke, and Molly’s version of the podcasting is very different, we get taken on. How are they? One hour sessions, each one of them, and there are about seven or eight of them, where you interview us.

Bill Gasiamis 37:52
And then you kind of extract from the people who you’ve interviewed information about their life, who they were, some of the what my specific story, I’ll talk about that. One was we spoke about my upbringing and my habits as a little kid, and how those habits became my habits later on in life, and perhaps the habits of a little kid didn’t serve the habits of an older kid, and then an quote, unquote adult and and then during those conversations, you gave me homework to do that was interesting, like actually doing the homework and reflecting on.

Bill Gasiamis 39:20
That part of the story that you were hoping to craft, but for me, it wasn’t. I wasn’t crafting a story, I was just trying to answer your questions and do what you’re doing now deeply think about something a situation, and then we go through that for about eight weeks, backwards and forwards, some emails, and then you put it all together, and you do a wonderful job of putting it all together. And then you deliver a an interview with the with the person that you’re interviewing that you’ve gone on this journey with, which goes for approximately 30 minutes.

Bill Gasiamis 39:58
And then also there’s a second part to that, where you get the stroke survivor to read their own story out, and that was a really interesting experience for me, because I wrote my book and it was written from my own, it was like my own agenda, I wanted to tell people about this strange path to stroke being the best thing that happened to you, even though it has this foundation of a really difficult time, stillness, darkness, all that thing.

Bill Gasiamis 40:36
But then when I was reading my story, the one that you helped me extract, and it was kind of trying to and it was coming from your perspective of the world and how you would like to share stroke stories. It was a far more profound experience, because I was reading that and I was getting emotional because I was reflecting on me, like you said, I was reflecting on the other person of me the other one, it was a very different experience. Was really profound.

Molly B. 41:19
Wow, I’m so glad. Bill, yeah, it’s and the process is different for every person, depending on. Well, depending on the person, some people write, and due to aphasia, some people have writing challenges or reading challenges, and so they will talk, and I’ll type as they talk. And like you said, sometimes, when people are talking in our our meetings and our reflective meetings, I’ll give homework and say, I want you to write two pages on that. I want to hear more about that bill and it the wisdom that comes from the stroke survivors.

Molly B. 42:11
My hope is that they hear themselves, because when they take a moment to stop and reflect, you said you were talking about journaling and how you’re not a journaler, this is an opportunity for people to talk it out, and I take notes as they’re talking and I’ll read it back to them. I’ll read back their key phrases, and they get to decide what they want to tell the world, so they’ll come up with their theme or their main takeaway from the story, and Bill, yours was post traumatic growth. How am I? How is my experience an example of post traumatic growth.

Bill Gasiamis 43:03
So, that looked very sorry, and I was going to say sorry to interrupt you, it was the one of the very first times that I spoke about post traumatic growth in detail and reflected on it in detail, and it’s been on my mind, and I never had the word for what I had experienced and what all of the people who I interviewed for the book, experienced. And we had this thing, but we didn’t have a label for it, and without a label, it kind of felt like we couldn’t touch it. And then, in that time that we spoken just before that, I started looking at the research of post traumatic growth.

Bill Gasiamis 43:47
Then I spoke about it with my mentor, and it was the catalyst to the work that I want to do next and take to the next sort of level, which is to speak to corporations, and I’m preparing a presentation on post traumatic growth, so that they understand that trauma is again that time, and then we can move ahead and forward from it, and then we can grow at the same time, and we can transform traumas and PTSD into post traumatic growth. We can, I’m not saying it’s easy, and I’m not saying you do it.

Bill Gasiamis 44:36
You know it’s it’s a long process and different for everybody, but you can do it, and this is what I got out of our interview, which I didn’t expect. You know, that’s the thing about it. It’s just far more profound than I ever thought an interview could be, especially because I started this interview very naively, this whole podcast, is very naively thinking it. It was just about me, but then realizing that it’s not about me at all, it’s about everybody else, and us. And I wanted to kind of understand from you, why start your podcast series? Why do this work 17 years later.

Molly B. 45:24
First off, I want to commend you on your work with post traumatic growth and finding a name for it, because, Bill, you’ve been doing it all along, since day one. You all of your work has been again, all of your work has been working to this point, everything that you have done who you are, has led you to this moment, and we can all say that about everything. How, how am I standing at the the intersection outside? Well, everything in my life led me to where I’m standing right now. But back to your question. How did I get here? Is that?

Bill Gasiamis 46:13
Yeah, why did you decide, after 17 years to start a podcast series connect with the stroke community? Clearly, this thing that you had been through, even though you moved on from it and got on with your life, clearly it hadn’t been properly put to work or dealt with or transformed yet.

Molly B. 46:38
Well, when COVID hit, I returned home to Oregon. My partner and I did not have children, or I don’t have children. We didn’t have children, and we both grew up in Oregon, and so we returned home, and I started volunteering to facilitate a support group with people who had been affected by stroke, and I had volunteered all my life in a variety of different ways, and loved it because I love getting to know people and how again, how they came to be, where they are, what they’re doing, and everyone has a different story, but I was sitting listening to these people, and I felt this deep.

Molly B. 47:30
I mean, again, this is a little bit about me. I felt this deep connection as they were talking about something that I hadn’t thought about in a very long time. It touched me deeply, and on a run one morning, I realized I have all the skills to put all this to work. I have been for 16 years, I worked with faculty and staff and students, one on one to craft their story and then deliver it to 400 people in the mic. So we would work on drafting their stories, and once a week at the school that I worked at that one of those people would get up in the microphone and we’d practice public speaking skills.

Molly B. 48:23
And I thought, I Why not do that with stroke survivors? That’s something I want to do in the minute I started conducting these reflection sessions with stroke survivors, and it’s something that I had done for a long time. I just felt goosebumps like I knew it was right, I knew that it was the moment that I knew I needed to be there. And Bill, you said that hearing yourself talk, you realize that your life had this culmination point, and you were on this trajectory. And a lot of times after people finish the sessions.

Molly B. 49:19
They start volunteering, or they start their own some people have started their own support groups. Some have gone back to rehab, some have shared their stories at the local library. All these people when they hear themselves talk, when they hear their story put together in one I mean, every person could have 100 stories.

The Power of Storytelling

Molly B. 49:48
There’s only 16 minutes, but when they hear themselves read it, there’s always an emotional piece, and it’s all things that they’ve said or written themselves. Yes, it’s just really powerful for people to see themselves, to look back and then realize there’s a path forward, maybe not realize there’s a path forward, sorry, and see their path forward.

Bill Gasiamis 50:20
Yeah, that’s profound. That flip of I’m just moving, I don’t know where I’m going to I know where I’m going is a game changer. Completely changes everything that happened to me as well. The podcast was not called the recovery after stroke podcast at the beginning. And then one day, not on a run, because I barely run, but one day, it same kind of thing happened. It was like ‘Whoa, you should be talking to stroke survivors, what are you doing talking to people who are not stroke survivors, they’re lovely, and their stories are important, but I couldn’t really resonate with them.

Bill Gasiamis 50:58
I couldn’t really find an audience. You know wasn’t sticking, and then as soon as I changed it to the recovery after stroke podcast and began interviewing either stroke survivors or people who helped stroke survivors or caregivers, it completely changed everything it was and I was. It was a Goosebumps moment for me too, like I couldn’t believe that that’s the thing that I was meant to do, it was so weird.

Molly B. 51:25
And then in that moment, I mean, I’ve only been doing this for a year, but the right people show up at the right time, and the right ideas pop into my head at the right time, and someone connects with some it’s like it’s unfolding on its own. It’s such a beautiful, I don’t know what to call it. It’s a beautiful thing to witness.

Bill Gasiamis 51:54
Yeah, it’s an experience.

Molly B. 51:56
It’s a spirit of its own.

Bill Gasiamis 52:00
It’s an experience, that’s what I’m finding. You know, the comments that are coming from all around the world and every day by email or on YouTube, so you never you know. You think you’re not going to get continuously blown away by everybody’s feedback, and then just every single day, there’s a new comment and a new feedback, and it’s like ‘Oh, man, I just never thought that there could be so much positivity and hope and opportunity to do that kind of work before. I never thought that.

Bill Gasiamis 52:32
And you know what’s a very clear theme of a massive pattern, because I’m pretty good at observing patterns in the world, whether they are people’s behavior, or my own or or any kind of pattern like sometimes things just pop up into mine and I see a pattern, and then it’s so obvious, volunteering is a key component to these transformations, to these post traumatic growth events. It’s kind of like one of the keystones, if you have that, then a lot of the other ones come in to place, they fall in.

Bill Gasiamis 53:12
Every one of the people who I interviewed for my book who made it into the 10 chapters volunteered, and so did the people who I didn’t, who didn’t make it in, because I interviewed more than 10 people, and it’s just a very common theme that in the thick of it, often with no resources and all the challenges you could possibly imagine, sometimes immediately after stroke, and you know that means few months after stroke, people are looking to help other stroke survivors. How can I help other stroke survivors when they are themselves, in dire need of help.

Molly B. 54:05
I see that too. We have monthly zooms with past guests and listeners, and yesterday, there were over half of the people in that group talked about volunteering. And it wasn’t necessarily volunteering in the stroke community, but it was volunteering. And one guy said I was just folding, I was folding letters and putting them in in a envelope, and he’s like ‘It didn’t feel like much, but it felt good to be there. And maybe we’re not ready to face our stroke.

Molly B. 54:49
Maybe we are still at a point that we’re like, what? What just happened? What is this? But there’s something powerful about offering. Our strengths, our talents, our time and joining with others to do something for the community.

Bill Gasiamis 55:09
It’s very religious. You know, it’s like, it’s one of the, and I don’t know a lot about religions per se, other than, you know, the Greek Orthodox religion a little bit, but it is a fundamental theme that pops up. It’s that doing something for your neighbor, for others, helping out where you can. Now, that whole theme seems to be taught a lot. Now, I also like to think it’s instinctive. It’s an instinct of us, rather than an embedded theme that we grew up with, and it was, you know, taught, told to us at every possible religious ceremony we’ve went to, but I feel like it’s an instinctive thing.

Bill Gasiamis 56:00
I think it’s how humans find community, that you know that that community, which is the one that we always hear about, you know, the one where you know, you look out for each other and you help your neighbor, the one where you’re not talking about politics or, you know, crazy stuff, like for me, I’ve got probably a strong political leaning in one way or another. But in all the 320 episodes that I’ve done so far, or thereabouts, I’ve never spoken about, who should be Prime Minister, President, what this guy thinks.

Bill Gasiamis 56:46
What policy should be about that we’ve never, ever spoken about any of that stuff. There’s so much more things to talk about that are far more meaningful than small talk about what you know, other people do you know, like it? There’s no room for it when you’re doing stuff like thinking about other people and how to help them.

Molly B. 57:18
Yeah, it when listening, how do, where do I go from here? Yeah, there’s something truly connective in each of us and that’s what you and I are doing, Bill, where we’re pulling stories from people. We’re asking them to talk about what’s important to them, and once we sit down at the table and talk about the real stuff, we which what’s the real stuff, right? Who knows, but you love talking philosophy, we can talk about the real stuff forever.

Molly B. 58:08
But when I finally sat, and actually when I was on a walk and was thinking about the commonalities between each of the talks. I came up with wisdom because everyone has their own unique wisdom, something for someone might be good, but it might not be the same, something for someone else and everyone has this unique wisdom that they are expressing through their story. Wisdom, purpose, they find purpose somewhere, going back to our volunteerism topic, wisdom, purpose, connection.

Molly B. 59:06
So finding connection within themselves, like their path, all of a sudden, they see how everything connects, or connections with others, creating community. Now they feel like they’re a part of other relationships that are growing deeper now, post stroke, so wisdom, purpose, connection and hope. With those three things, there’s a way forward.

Bill Gasiamis 59:36
Yeah, all familiar themes. That’s things that I noticed, the purpose this chapter in my book, the last chapter is stumbling into purpose. Because nobody sets out to find their purpose when they find itm if you try and do purpose by going, I’m going to think about what my purpose in life is. You’d be thinking about it for an eternity you’re never going to get because it’s not what it’s about. Because, thinking about purpose is not purposeful, like, you know what I mean, it’s trying to trying to compose purpose.

Bill Gasiamis 1:00:17
And you can’t compose purpose, you have to feel it, you have to be it, you have to live it. It’s not something you think, you don’t think it, and that’s what all of the people who I interviewed did, is they all stumbled into their purpose. They didn’t set out for volunteering by looking at their own life and making changes where they knew that they perhaps could do a little better, nutrition, sleep, relationships, exercise or effort in that exercise space.

Bill Gasiamis 1:00:56
Because everyone after stroke can exercise differently at different levels capacities, when, when they tended to a lot of those things, purpose kind of just spat itself out at the end and going, ha, you found your purpose.

Molly B. 1:01:13
Well, that’s the thing is you can do things that are purposeful. You can talk about purpose, but until that moment that you spoke about Bill, until that moment where you have the chills and you’re like, I feel it. I am living purpose, it’s for me. It’s a bodily experience, It’s for me, it’s a well, I’m a very kinesthetic person. So for somebody else, it might be hearing themselves say something, and then they realize ‘Ah, I’m living with purpose.

Bill Gasiamis 1:01:57
For me, it was episode 70. I’m pretty sure it was episode 70, I looked it up for the book to make sure I knew which one it was. I said it to my guest, and my guest set it back to me, I think I found my purpose. And my guest said ‘I think I found my purpose. And I kind of went ‘Oh, I think I just said that, oh, what’s all that about? And then that begins another, another kind of level of deep thought. What does that even mean? How do I, how did I do that? And I think in that interview was a lot of firsts, you know, I think in that interview was also.

Bill Gasiamis 1:02:33
I think, strokes, the best thing that happened to me. So, what is that all about? Clearly, you’re got some problem with your head Bill, because how can stroke be the best thing that happens to you? And then there goes another dive, deep dive, to uncut, unpack that and work it out, you know? So it sounds like you know, what I love about your journey is that I reckon there’s a lot of this stuff to come for you, still, a lot of these massive moments and ahas and just when you’re not expecting it, you know, they’ll just pop up.

Molly B. 1:03:05
We all have it. I love it, it’s so exciting. What’s going to happen tomorrow? But Bill, I love that you said that you repeated the story about episode 70, because in our interview, you were talking about how profound episode 70 was for you in hearing yourself say something and then the guest saying it back to you. But we talk all the time, all day long, and for some reason, that day and that moment, you were able to hear yourself say it, and for some reason, he mirrored you on that.

Bill Gasiamis 1:03:50
Yeah, it’s just, it was just, it was another one of those coming together things, everything just happened together. And, yeah, it’s pretty profound. I like to encourage my guests to listen back to the interview. Sometimes, as a third person listening in on themselves in a conversation with somebody else, you have another level of understanding or clarity, or you hear yourself say something that you didn’t remember that you said, and it just changes the game, like it completely shifts things.

Bill Gasiamis 1:04:25
Do you ever catch yourself out, sort of saying or doing things that just astound you about yourself? Because I’m pretty proud of myself sometimes.

Molly B. 1:04:39
In the interview process?

Bill Gasiamis 1:04:40
Yeah.

Molly B. 1:04:42
It is so odd. Bill, it’s so odd to go back through and edit and think, man, I always say this word, or I stumble over this, or I stutter. And you’re right. There are those moments, the ones that I love, are the moments that I am stumped by the interviewee, because I just love listening to them, and then I have to edit out all the pauses that I’m like ‘Whoa, those are when I listen back to my interviews I’m in. I’m surprised at how often I pause, it makes me realize that I may not be the best interviewer, because I just want to, I just want to hear them talk.

Bill Gasiamis 1:05:48
No, then they’re your perfect interviewer, because that’s the whole point of it, isn’t it? That’s the whole point is to hear the other person talk and to create space for them. And it’s not about you, even though I make it about me a little bit in every episode, because to bring the conversation along, you have to share my experience and your experience and so on.

Bill Gasiamis 1:06:08
But it’s your space, it’s about you. It’s that’s the whole I’ve had, which is so bizarre. I’ve had stroke survivors. Come on the podcast, they’ve had a stroke, 10, 13, 14, 15, years ago. Never spoken to anybody about it ever, and then they come on the podcast, and I’m like ‘What, how can that be?

Molly B. 1:06:31
Are those interviews different than the others?

Bill Gasiamis 1:06:36
I feel they’re more cathartic for that person. I feel like they just are that first stumbling, that first step, you know whether they’re stumbling over it or trying to get to it or whatever, because if they I imagine that not speaking about anything for 10 years, a particular issue, dramatic episode, whatever it is, probably not that useful. I think it’s more useful to talk about stuff, just from what I understand about trauma and keeping things bottled up and just, I don’t know, I think everything needs to be dealt with some way, shape or form.

Bill Gasiamis 1:07:18
And I find it’s a real honor and a privilege to be the first person that somebody’s spoken to stroke about for 10 years. It just shouldn’t be me like it should have happened already, and I’m grateful that it’s happening and it’s that it is me. And I think I got that with you, because, like I said, I’ve spoken about it many times, and I have been interviewed by different people for different podcasts, but not at the level and for the purpose that you did. And I got that whole, I think.

Bill Gasiamis 1:08:00
And like I said, well, I explained it already. It was a new experience, and it was a new understanding, and it was bringing things that were kind of floating around in the periphery, bringing them all together, and giving me one of those aha moments again, like it’s that thing you’re also facilitating that space for for me and and I listened to Michael Shutt’s episode that just went out, and I’ve interviewed Michael as well. And you know, just hearing your version and the stuff that you got out of him, so to speak, was really eye opening again.

Bill Gasiamis 1:08:46
It’s really, you know, it is well worth the time and effort to extract that stuff, not that, the term extract is the right word, but it’s, you know, to see it be born or emerge, those words, those thoughts, those feelings. I think it’s a real good allocation of time and resources.

Molly B. 1:09:15
I’m so glad, Bill, thank you, and it’s interesting because you were just talking about speaking with people who are talking about their experience for the first time. And someone once asked, how, how do you choose your your guests? And there’s an initial meeting over zoom and I can we can all tell if someone’s ready to share a story in order to inspire others, or if someone’s there to process their own trauma. And I’m not a psychologist, and the process is for people who are ready, who are on another side of the dark.

Molly B. 1:10:16
Of course, we all still have our dark moments, because when does recovery ever stop, but the people who end up sharing their story have have processed a lot of that already, and I’m thankful that people like you and like Michael Shutt, I’ve worked with more than a few people who have written books or have done something with their stroke experience in order to give back to the stroke community.

Molly B. 1:10:50
And my first question in the meeting is, are you here to share something that you’ve already done, or do you want to go through the process? And I haven’t had one person say ‘Let me share what I’ve already done. And I’m really thankful for the courage that people have in order to create, to explore and to create. So thank you for saying that, Bill, thank you for going through the experience with me too.

Bill Gasiamis 1:11:25
Yeah, you’re welcome. It is an awesome experience, I just think about the people who I’ve interviewed as well, now that you said that, about people who are ready to share, to help others, and people who kind of still early on. So my platform is, the only qualification is that you’ve had a stroke. You know someone who had a stroke, where you help people out of stroke, there’s no interview beforehand. People just say, cannot be on your podcast and they come.

Molly B. 1:11:57
There’s value in that. There’s value in seeing every stage and every angle, and it’s like showing up to a support group. Everyone has something to contribute.

Bill Gasiamis 1:12:08
Yeah, and I don’t pick my guests, they pick me. So I don’t say ‘Oh yeah, that person is going to be the right one or not. I mean, and I know you don’t do that either, but you’re, you know your purposes for that particular storytelling method that you just choose is different, right? So, for me, the ones that step the point I’m trying to make is the ones that stand out the most are the ones that always, more often than not, will say ‘I want to tell my story. I hope it helps someone that’s like, All right, yeah, come on, that’s exactly what I want. I want to help other people.

Bill Gasiamis 1:12:53
I’m so thankful that you want to help other people. I’ll facilitate that for you, I’ll help you do that. They haven’t got a podcast, and never thought of starting a podcast, they haven’t written a book yet, they’re not interested in writing a book, whatever, but they they understand the power of of sharing stories and whatever I’ve heard about stories and how they’ve were told in the ancient days in 2000 years ago or 4000 years ago, or stories that come from further beyond that they will pass down person to person.

Bill Gasiamis 1:13:32
That’s how stories worked and became part of the health and well being of a society. They were shared experiences, learnings, they were things that we it was education. It was passing on wisdom before, perhaps in some parts of the world, before it was formalized the way that it is now.

Molly B. 1:14:01
Yeah, it’s, it’s interesting how everything comes back around right now. In business and in education, everyone’s talking about storytelling. It’s, we need to bring storytelling in the classroom, because if they can feel it, they learn it. And you’re, you’re right. This is some it’s evolutionary. It’s evolutionary, right? And we feel it in our bodies. It’s visceral, that human connection when we’re able to share, and it’s profound for the person sharing and for the people listening.

Molly B. 1:14:35
It’s like this, this communal levity that happens, or depth that happens. I don’t know if we’re going up or down, but it’s a little bit of both.

Bill Gasiamis 1:14:46
I think we’re going down, and then that helps people to go up. You know, there we go, this might be a little bit different for you, but I ask everybody these three questions at the end of each episode, and because it’s been a while and you don’t remember a lot, maybe you won’t be able to answer it specifically how others have but that’s alright. So the first question is, what is the hardest thing about stroke for you? Or what was or what has been?

Molly B. 1:15:21
The disorientation, wondering what it all means and what I can give now. I thought I knew what my, dare I say, purpose. I thought I knew my trajectory, and was passionate about where I was going, and then I was then everything halted. So disorientation, being disoriented, the feeling of disconnect, also disconnect from community. All the sudden, I’m different, nobody can understand, and which, of course, came back. All of that comes back, but there are those moments that feel confusing.

Bill Gasiamis 1:16:29
What is something that stroke has taught you?

Molly B. 1:16:37
The threads of life ultimately tied together. It has taught me that stillness can be a gift, that wisdom emerges, that wisdom emerges through the process of what has it taught me that when we step away from the normalcy of life, and we’re forced to be still and reflect on ourselves and ourselves in relation to the world. We see life differently, so stroke offered me that opportunity, and still does.

Bill Gasiamis 1:17:41
Yeah, that’s cool. There’s people listening who are in the stroke journey. We don’t know might be at the beginning, in the middle, there might be far down the road, but they’re listening, and they’re trying to get something out of this podcast interview. You know they’re trying to learn or get a concept or grow or have an awareness. What do you want to tell the people who are listening and watching?

Molly B. 1:18:10
Patience, purpose and honor your own wisdom. Connection, I’m going back to the values, wisdom, purpose, connection and hope.

Bill Gasiamis 1:18:49
Brilliant, they’re great words, and they are words that often get repeated by many, many people who I’ve interviewed, and they seem to play a very important role in people’s journeys. So maybe people will reflect on some of those words and see what they mean for them, or what comes to them about that.

Molly B. 1:19:16
I like that you said that, see what they mean to them. It’s important that it’s their own.

Bill Gasiamis 1:19:27
And you and I were just tossing out our own ideas as just a way and an example for other people to kind of be able to do the same thing, to contemplate their version of it, and to go ‘Oh yeah, I agree with that, or I experienced that, or I didn’t, or I know what that means, or I wouldn’t want to go down that path, or I might go down that path. It has been awesome experience to work with you.

Bill Gasiamis 1:20:00
And do my story and share that with the world, and there’ll be links to that in the show notes for people to find that. Also, there’ll be links to your podcast and your other channels. But for anyone listening and watching, where is the best place for them to find your work.

Molly B. 1:20:22
Yeah, our we are a nonprofit organization, and our website is www.beyondstillness.org, and you can find ways to contact us there, and there’s a little overview of our story creation process there as well. And we have community zoom events, and all are welcome to those events, and those often have past guests and listeners involved. And we also have retreat series, which are weekly, a series of weekly meetings for individuals, a way to connect and reflect on their experiences. And then I recently joined social media.

Molly B. 1:21:12
Thank you for the nudge Bill and we created an Instagram that is stories, underscore after underscore stroke. Stories after stroke and our Facebook page is Beyond Stillness. Stories after stroke, which is the name of our organization,

Bill Gasiamis 1:21:38
Beautiful.

Molly B. 1:21:40
Anything else Bill? What else do you usually say? You’re the professional here.

Bill Gasiamis 1:21:44
I’m just learning. I’m just the guy who wants to see more of these things. You know, what I was missing when I was going through this 12, more than 5 years ago now? And what you were missing was anything. And I know that the more things that are out there that stroke survivors can stumble across in their own Google searches or from whoever they know, the better, right? That’s the whole point of this whole thing. It’s like I’m doing what I was missing out on what I didn’t have.

Bill Gasiamis 1:22:22
So, I hope that that’s it, there’s nothing else that’s, that’s it, you know, I just want people to find it and maybe join, maybe jump on and see if they’re a good fit for a story, with you. And that’ll be great if that happens, that’s clearly of benefit to the world and to the society and to community. So thank you for being on the podcast.

Molly B. 1:22:55
Thank you, Bill. Thank you. I have loved connecting with you over the past two months, and now I love being in your space. Here, you create a space that feels very welcoming, and all of our conversations lead to philosophy and spirituality and purpose, and you’re really an old soul that invites other people into being themselves and exploring that space within them. So thank you for doing that for me.

Final Thoughts and Resources

Bill Gasiamis 1:23:28
Well, that brings us to the end of this episode with Molly, her journey from surviving venus sinus thrombosis to founding Beyond Stillness. Stories after stroke is a testament to resilience, hope and the power of connection. Before we wrap up, I want to thank everyone who’s been a part of this incredible recovery after stroke community, your comments, feedback and support on YouTube, Spotify and iTunes, keep this podcast going strong. If today’s episode inspired you or offered you valuable insights.

Bill Gasiamis 1:23:59
Please consider leaving a five-star rating on Spotify or iTunes or a like and a comment on the YouTube channel. It truly helps others find the podcast and join our growing community. Remember to check out Molly’s work at beyondstilness.org and explore the resources available at recoveryafterstroke.com thank you again for tuning in, and I’ll see you in the next episode.

Intro 1:24:40
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:25:10
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Intro 1:25:35
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Intro 1:26:01
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The post Molly Buccola’s Recovery from Venous Sinus Thrombosis: A Story of Resilience and Purpose appeared first on Recovery After Stroke.

Discover how Dr. Shai Efrati’s hyperbaric oxygen therapy (HBOT) is revolutionizing stroke recovery and offering hope for brain regeneration.

Learn More About Hyperbaric Oxygen Therapy (HBOT)

Hyperbaric Oxygen Therapy Improves Stroke Deficits
Hyperbaric Oxygen Therapy With Dr. Amir Hadanny

Highlights:

00:00 Updates and Introduction to Hyperbaric Oxygen Therapy (HBOT)
06:52 Beyond Normal By Dr. Shai Efrati
11:48 The Hyperoxic Hypoxic Paradox (HHP)
28:55 Enhanced Medicine and Its Principles
44:48 Hyperbaric Oxygen Therapy for Stroke Recovery
53:16 Long COVID and Its Treatment
1:01:23 Aging and the Importance of Being Needable
1:08:19 Personal Regimen and Lifestyle Advice
1:12:57 Conclusion and Final Thoughts

Transcript:

Updates and Introduction to Hyperbaric Oxygen Therapy (HBOT)

Bill Gasiamis 0:00
Hello everyone, and welcome to another episode of the recovery after stroke podcast. Before we dive into today’s fascinating conversation, I have some exciting updates to share. My book “The Unexpected Way That A Stroke Became The Best Thing That Happened” has now sold over 300 copies and is receiving excellent reviews from readers who are finding it inspiring and practical for navigating post-stroke growth. If you haven’t picked up your copy yet, now’s a great time to do so. I also wanted to remind you about my courses page at recoveryafterstroke.com/learn.

Bill Gasiamis 0:37
Where you’ll find some resources to guide you through stroke recovery. These are courses created by me a stroke survivor, for other stroke survivors, offering insights and actionable advice for reclaiming your life after stroke. Now let’s talk about today’s episode hyperbaric oxygen therapy or HBOT, is a topic that’s been creating a lot of buzz in the recovery community. It’s a therapy I haven’t personally experienced, but one that has sparked my curiosity and the curiosity of many stroke survivors, because of its potential to improve deficits after a stroke.

Bill Gasiamis 1:19
Today, I’m speaking with Dr. Shai Efrati, a leading expert in hyperbaric oxygen therapy and the author of the book ‘Beyond normal, how the new science of enhanced medicine elevates peak performance and repairs brain injuries. Dr. Efrati runs the largest hyperbaric sensor in the world, and has spent decades researching the mechanisms behind this therapy.

Bill Gasiamis 1:48
One of the most fascinating discoveries we’ll explore is how hyperbaric oxygen therapy works, not by simply flooding the body with oxygen, but by mimicking a state of hypoxia to trigger powerful repair mechanisms in the brain and body. We’ll also clarify an important point when we talk about hyperbaric oxygen therapy in this episode, because we’re discussing clinically administered hyperbaric therapy.

Bill Gasiamis 2:19
Not the kind you might find in beauty salons or other non clinical settings, this is about evidence based treatments with protocols designed to heal brain injuries, not just casual wellness solutions. Dr. Efrati and I will cover the science behind hyperbaric oxygen therapy, its practical applications for stroke survivors and why therapy might be a game changer for some, hope you find this episode both inspiring and packed with useful insights.

Bill Gasiamis 2:51
Dr. Shai Efrati, welcome to the podcast.

Dr. Shai Efrati 2:55
Happy to be here.

Bill Gasiamis 2:57
Thanks for being here, I want to get a little bit of an understanding, a deeper understanding, about a conversation I started already with Dr. Amir Haddany, I’ve had two conversations with him, and the two episodes that we did about hyperbaric oxygen therapy created quite the conversation with the stroke survivors in my community that follow the podcast.

Bill Gasiamis 3:20
Of course, they’re looking at hyperbaric oxygen therapy potentially as a way to help improve the deficits after stroke, be it physical leg deficits or mental clarity deficits, and one of the reasons it’s being discussed and I like to educate the community about it is because one of the other major therapies that’s available, but very difficult to obtain, is the etanercept, Perispinal etanercept (PSE), which is a rheumatoid arthritis therapy that has been found to improve for some patients, the cognitive deficits and physical deficits after a stroke.

Bill Gasiamis 4:08
The only challenge with it is the only place that you can get it is in Bucharad in Florida, through a clinic over there that seems to be the only clinic, almost any clinic in the world, where you can get an extremely expensive right? And one of the things about it is, is that it’s very successful, but it’s no way of knowing where it’s going to who it’s going to be able to help or not, and often, stroke survivors have to have to pay up to 20,000 US dollars to find out. So it’s a little bit difficult for many stroke survivors who are not working to access it.

Bill Gasiamis 4:51
And my biggest challenge with it is that there aren’t enough studies, there aren’t enough ways for people to access this particular version of etanercept, which is injected into the spinal cord the person’s lying upside down, and it goes into the brain, and then it starts to decrease the inflammation in the head where the stroke occurred. And as a result, it must access those areas where the where the penumbras are, and support to improve the conditions there, and as a result, people have minor benefits, miraculous benefits or no benefit.

Bill Gasiamis 5:36
And when I mention it to stroke survivors who ask, and they say, you know, how much does it cost? Where can I go and get it? It’s a real put off to say it’s going to cost you around $20,000 US, maybe more, and then you have to get to the US, etc. And one of the things I like to do is say to them, before you commit to etanercept perispinal, is have a look at these interviews that I did with Dr. Amir Haddany. What I love about them is that the organization of VIV clinics, does a really important first step.

Bill Gasiamis 6:13
Which is to determine whether or not the patient is going to be a good candidate for hyperbaric oxygen therapy, and that, I think that’s so important, because that then means that the patient doesn’t have to go through the entire process and then not get a result. So this is kind of where I’m at with the whole conversation about hyperbaric oxygen therapy. You wrote a book ‘Beyond normal. We’ll talk about that, do you have a copy there? Can you show us that?

Dr. Shai Efrati 6:13
Yeah, this is the book.

Beyond Normal By Dr. Shai Efrati

Bill Gasiamis 6:52
Fantastic, ‘Beyond normal, how the new science of enhanced medicine elevates peak performance and repairs brain injuries. My favorite topic, how to repair brain injuries, and I’ve prepared some questions about your book. But before we go into the questions, can you give me a little bit of background of yourself?

Dr. Shai Efrati 7:17
I’m a physician, I live in Tel Aviv. Actually, I’m speaking in now from Tel Aviv, I started in internal medicine, nephrology, hyperbolic medicine, and I’m a professor at the Tel Aviv University, the medical school and the neuroscience school. I work, I heading this goal center for hyperbolic medicine and in research, which is the last largest hyperbaric center worldwide, we are treating more than 300 patients per day. Just for the perspective, and I would like, based on what you said, just to put two major thing into perspective.

Dr. Shai Efrati 7:57
One of them is the brain, and looking at the brain as a tissue which reflects what kind of treatment can be benefit to that. And with your permission, I would like to say a few words about hyperbolic medicine, just to put things into perspective. So, what is hyperbolic medicine? Usually we train physician in medical school that the tools that they have in their hand in order to target any disease or any limitation that they want for the patient can be one of two is even the knife.

Dr. Shai Efrati 8:42
You know, you can hold the knife and cut and fix whatever you want mechanically. This is one tool, and the second tool is chemistry, you can take a pill or inject chemical entity in order to achieve a biological goal. When we are speaking about hyperbolic medicine, we are utilizing the environment in order to achieve a biological goal, meaning we can play with the pressure and gas concentration in order to achieve some biological, wishful goal that we have that’s that’s what hyperbolic medicine is.

Dr. Shai Efrati 9:28
And if I need to split the indication into main categories, so there are categories where the pressure is the primary goal. For example, if somebody has dive and went too fast to the surface, and then you have the bends, what we call the compression syndrome, then he has a bubble that need to be shrinking, and for that, we are increasing the pressure shrinking the bubble, and the pressure is the indication of the treatment.

Bill Gasiamis 10:01
Let’s take a quick pause here before we dive back into Dr. Shei Efrati’s incredible insights on hyperbaric oxygen therapy and its potential for stroke recovery. I want to remind you about my book ‘The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s already sold over 300 copies and continues to receive excellent reviews for its practical guidance and inspiring stories of stroke survivors who have turned adversity into an opportunity for growth. You can find it on Amazon or at recoveryafterstroke.com/book.

Bill Gasiamis 10:38
And remember to check out recoveryafterstrok.com/learn. Where you’ll find narrated video lessons and resources created specifically for stroke survivors and caregivers, these courses are designed to help you take actionable steps in your recovery journey. Now let’s get back to Dr Friday and learn more about hyperbaric oxygen therapy and how it could be a game changer for stroke survivors like you.

Dr. Shai Efrati 11:06
With this regard, we don’t even use oxygen, we are using other gasses, like helix in order to get to such a high pressure. Because it doesn’t matter to us what what you hale-inhale. What’s important is that we will reach the target pressure to shrink the bubble. So that’s that’s a category. The second category is oxygen as a drug, meaning we want to deliver more oxygen, and if you want to deliver more oxygen, it’s not that I can come to you and tell you, I want you to take two or three pills of oxygen per day, you know, I can say that, but oxygen is a gas.

The Hyperoxic Hypoxic Paradox (HHP)

Dr. Shai Efrati 11:48
So if I want you to take more oxygen, it means that I need to compress more all oxygen molecules per square more will go into the lung and from the lungs to the rest of the body, and there are classical indication for that. For example, if somebody have co intoxication is smoke inhalation, then you have to compete with the CO, the oxygen will compete with the CO on the location when the oxygen is being utilized. So you are increasing the oxygen to very high level, if you have acute retinal arterial occlusion, which is a kind of stroke to the retina.

Dr. Shai Efrati 12:30
If it happened fast enough, if you diagnose that fast enough you will get immediately to the chamber, and then we will get to very high oxygen, and oxygen will go by diffusion, even to the location where there is no perfusion, doing the acute stroke, and by doing that, you can keep the tissue alive until you are opening the occlusion. So this is a kind of acute stroke, but stroke in the eye, while only that, because only on that, we have a study.

Dr. Shai Efrati 13:01
So with this regard, the oxygen is the active ingredient. However, what we have been working on in the last 20 years or more is regeneration, and our thinking is how we can induce regeneration, and that’s the third big indication, which is relevant to the chronic stroke injury, not the acute stroke the chronic stroke injury, and when you come to think about it, you say ‘Okay, I want to induce regeneration. So what do I need in order to in this generation, meaning the repair mechanism? There are several crucial element.

Dr. Shai Efrati 13:49
One of them is, of course, oxygen, because if there is no oxygen supply, nothing will happen, if I will include the blood flow to the hand ‘surprise, surprise, the hand will fall, okay? I mean, doesn’t matter what else I will do, and so oxygen is one crucial element, but what’s important is to trigger the repair mechanism, and we were thinking, what the body actually sense the triggering that will trigger the stem cells proliferation, the build up of new blood vessels, all the repair that happen.

Dr. Shai Efrati 14:28
What trigger all that it happens to be that the most powerful trigger for the repair mechanism is Hypoxia, is lack of oxygen, because from evolution perspective, when we are lacking oxygen, it means a damage will happen. So lack of oxygen is the most powerful trigger in our body that once it’s been sensed, even at the cellular level, when there is lack of oxygen, there is a promotor named Heath, he toxic induced factor free Nobel Prize winner over the Heath, when heat is going up.

Dr. Shai Efrati 15:14
It will initiate expression of a whole casket of game that will culminate in the repair of the tissue. So hypoxia is the most powerful trigger. So, you can say ‘Okay, I will take a person, stop his heartbeat, stop his breathing, I will trigger the repair mechanism. There are only one problem with regard to that, he will really need it. Okay? So we took it a step forward, and we were thinking, what the body actually sense? Does the body sense absolute values, or does the body sense the Delta, the change, there is no absolute in anything in life, everything is relative, everything.

Dr. Shai Efrati 16:08
I will feel that I’m fortunate or unfortunate, not really based on the absolute value of what I have, but rather based on what my neighbor have. You know, if I have something and my neighbor has more, I will say ‘Oh, my God, but, but look what you have, okay? And vice versa. So you can choose the place where you live very carefully if you want to be happy. So the same happen at the cellular level, and we decided we want to take advantage of that, meaning we will increase the oxygen to very high level.

Dr. Shai Efrati 16:43
And then do a fast decline back to the normal, in a way that the decline from very high back to the normal will be interpreted at the cellular level as hypoxia, even though we don’t have hypoxia.

Bill Gasiamis 16:59
Wow, okay.

Dr. Shai Efrati 17:00
This is what we call the hyperoxic hypoxic paradox (HHP). So, for example, we have taken a person into a chamber, which is a sweet the the the chamber is being compressed with air, not with oxygen, then you get the oxygen by mask, and by doing that we are increasing the blood oxygenation from 100 Mercurys to 1600.

Dr. Shai Efrati 17:30
And then we are asking the people to do things that seems ridiculous. We ask them to take the mask off, and when they are taking the mask off, there is a sharp decline from very high back to the normal and then we are doing that again in a protocol that we develop and utilize, and by doing this fluctuation, the body actually initiate all the biological cascade that happened during epoxia in hyper oxygenized condition. This is what we call the hyperoxic hypoxic paradox, is that point clear? Is that one clear?

Bill Gasiamis 18:16
That’s a very clear point, but let me give it to you back, so you know that I did definitely understand it. So from my understanding, is a patient goes into the chamber. The chamber is like a, it’s about the size of a room, isn’t it, it’s quite large, fits a number of people in there. And you walk in, you sit down, and the air is pressurized with normal oxygen. Just the standard oxygen from the environment pressurized to a certain level, and then the particular patient puts a mask on where they received oxygen to increase the blood oxygen concentration to a higher level.

Bill Gasiamis 19:00
And then you guys simply ask them to remove the mask, and that triggers the the brain in thinking that a hypoxic event has happened, and as a result of that, that makes the brain go into that repair mechanism, create more blood vessels, and increase.

Dr. Shai Efrati 19:20
The stem cells proliferation.

Bill Gasiamis 19:23
The stem cells.

Dr. Shai Efrati 19:25
And it happens to be that we have stem cells in the brain. When I was in medical school, I was told that neurons cannot, cannot be regenerated. That’s what I was been taught ‘surprise, surprise, there are stem cells in the brain. The highest concentration of what we call neuronal stem cells is in the hippocampus, but also in the periventricular area, there are stem cells. These cells replicate and migrate, it takes time, but the brain tissue is changing all the time, so actually. The brain that speak with you now was not in medical school, it’s a new brain.

Dr. Shai Efrati 20:04
So if you are frustrated for somebody, there is still hope. Okay, come to him a year later, you are speaking with a new brain. Okay, so don’t give up on people, it’s changing all the time, and actually, the balance of the amount of functional tissue that we have, functional brain tissue, is the balance between regeneration, the things that takes us down, and regeneration, degeneration and regeneration. That’s the balance of where we are now, and this child balance also change a long life, when we are young, for example, when we were just born as a baby.

Dr. Shai Efrati 20:42
You know, we are born with with an open scalp, why? Because in the first three years, the brain is growing all the time. Okay? We are the only species nature that when the baby is coming to this world is still an embryo, because the brain haven’t developed yet, so 80% of the energy is going to build up the brain, and then we have childhood with still the balance, it’s toward growing, and then we have the reproductive period, in the reproductive period, you have a balance between degeneration to regeneration.

Dr. Shai Efrati 21:18
It’s balanced, of course, that if you have an insult of somebody hit you in the brain, then then it takes you down, and then we are reaching the post reproductive period, where the stem cells are starting to go down. The blood vessels start to be occluded, and then we have the balance towards down in general. So what we are doing with the specific protocol, and it has to be the specific protocol that we develop, nothing else, that’s the only thing that was proved to be beneficial.

Dr. Shai Efrati 21:50
For now, maybe we will have a better protocol in a couple of years, for now, it’s fluctuation in the oxygen and the pressure. It has to be repeated with each session, you are increasing the stem cells, you are increasing the heave, you are increasing the generation of the blood vessel. But it’s not a magic, it takes time. It takes time you have to repeat it, it just like a wound. If you have a wound, you do not expect that the wound will recover in a day or two.

Dr. Shai Efrati 22:23
It’s clear to you, it’s a tissue. It needs to be repaired, and the brain is also a tissue. Actually, we initiated all the research program that we have 20 years ago by a simple statement that that we had, and the statement was, the brain is a tissue as simple as that.

Dr. Shai Efrati 22:49
That was a new finding, it was a new understanding.

Dr. Shai Efrati 22:54
Perspective, meaning, many neurologies, you know, we used to think about the brain. We are doing city MRI, high tech, technology, we speak about the brain in a mystic fashion, cognition, personality, it’s a tissue. It’s a tissue and the first thing that we need is to understand that the brain is a tissue, and just like other wounds in the body, we also have wounds in the brain. If the predominant thing in the wound is inflammation, like we have peripheral vasculitis that cause peripheral wound, then etarnercept, anti-TNF, what you have just described, will work for that.

Dr. Shai Efrati 23:20
Because inflammation is the dominant element. If ischemia is a bottleneck, then you need to open that with a hyperbaric if it’s a totally necrotic tissue, meaning the tissue is already dead, fully dead. And replaced with fluid, it means that even our hyperbaric oxygen protocol cannot help with that, because you don’t have infrastructure on which the stem cells can can migrate and proliferate. So the first stage is to look, first of all to to have the insight that the brain is a tissue, profound. It’s inside, the second thing is to say ‘Okay, we have wounds.

Dr. Shai Efrati 24:33
The third thing you say ‘Okay, let’s characterize the one. But for that, of course, you need some high, advanced imaging that can demonstrate not only the anatomy, but also the metabolism, and once you see that, now you can, you can set the expectation with the patient. You can say the inflammation is predominant, they can tell us ‘Okay, you have metabolic dysfunction area. Okay, let’s go to hyperbolic and whatever the tissue is that will be the clinical end results, if it’s a part related to the hand, the hand will move, if it’s part related to the leg, the leg will move.

Dr. Shai Efrati 25:17
But you can set the expectation, you can tell the client, what you think will happen if he wants it can If not, and if you have only an aquatic tissue, then for now, we have nothing to do. In Tel Aviv University, we are working on solution, for example, to take cells from the abdomen, due to them reverse engineering to become stem cells, and then we are generating neuronal stem cells and creating a patch of neuronal cells, just to put the patch in the place where you have necrotic.

Dr. Shai Efrati 25:54
So for now, it’s only in mice, but hopefully it will reach to the stage where human can be your three years. But that’s the perspective. The brain is a tissue, okay? We used to think on the brain, no stem cells, no regeneration. We discussed that, we used to think that in the brain there is no lymphatic tissue. The lymphatic vessels are the are the are the system that take the garbage out. So we didn’t so lymphatic vessel ‘surprise, surprise, in the last year, we realized that there is glymphatic system, a system, it’s working a different way.

Dr. Shai Efrati 26:36
It’s like a sponge that you squeeze it and take the garbage out, and the glymphatic system works during our sleep, doing the REM sleep. So we have also that so the brain is a tissue, and we should refer to the brain as a tissue, and we should characterize the wound, see what we are dealing with based on this ‘Okay, for you, that’s good for you, that’s good for you, that’s good. That’s the perspective, sorry for speaking too much.

Bill Gasiamis 27:08
That’s beautiful, I love that, that’s a such a great explanation. So not only back in the 90s, when you were studying, because you’re 49 years old, right?

Dr. Shai Efrati 27:18
I’m 54.

Bill Gasiamis 27:20
You’re 54 so not only in the 90s was it starting to just emerge that the that there is plasticity, and the brain is not like a computer, that in fact, it is plastic, and you can change, and it can adapt.

Bill Gasiamis 27:35
It was also a challenge because it wasn’t thought that there was stem cell activity in the brain, that once the tissue was offline, it was offline, and you couldn’t regenerate it, and I just find that fascinating, that now we’re at that stage that we found that, and you also said that other part, which was to create a patch of stem cells that perhaps we can add to the brain that is an amazing feeling.

Dr. Shai Efrati 28:05
For the future, that’s for the future. That’s only more than four now, that’s for the future.

Bill Gasiamis 28:11
That’s fine, I mean, just the fact that that is a discussion, that is an amazing thing, right? Because most stroke survivors require hope, hope that there is something to look forward to, even if they are not the recipients of that, that other stroke survivors might be the recipients of that. That is such a very important thing. So I love the fact that you, you gave us that information. Now, then what you actually described was the process by which you can receive a patient on day one, have a conversation with them, take them through a certain number of tests.

Enhanced Medicine and Its Principles

Bill Gasiamis 28:55
And then get them to a point in the treatment before this treatment has even started, where you can say, this is what we see based on what we see, this was what we might expect. You have a decision to make as to whether or not you want to continue from here and go forward, it’s completely transparent. It is an informed decision that the stroke survivor is making, instead of this kind of, if you’ve got the money, put it down and roll the dice and see what you get. Like, it’s a very different thing.

Bill Gasiamis 29:28
Now, the etanercept, perispinal etanercept, has helped a lot of stroke survivors. So I’m not rubbishing the the procedure. I am concerned a little bit about the way that it’s being delivered to patients and the lack of studies around it. However, a lot of people who can afford it have benefited from it. So just now to understand you also said about the time it takes time to support to regenerate the tissue in the brain. What kind of dosage are we talking about over what period of time?

Dr. Shai Efrati 30:06
First of all, I want to reflect to the first part with reflect to the first part, you know, our job as the physician, the way I see it and our team seat is not to tell the patient or the clients what to do. Our job as the physician is to be able to transfer the knowledge and the data that we have to the client in a way that he can understand and make a decision by himself. For example, if you are speaking France and I speak English or speaking Spanish and I speak English, my job is to translate it to Spanish or France or whatever you talk so you can make the decision, I’m not smarter than you.

Dr. Shai Efrati 31:04
I only have more access to data, which also changing in nowadays, because everybody can discuss his colleague, ChatGPT or Gemini or whatever it is, and have the same access to data. But my job is to translate the data in a way that you can understand, and as long as you understand, any decision that you make is good enough for me. For example, I will give you example from discussions with people who sit in front of me, and then I tell them, you know, I see that the hand is an ecotic area, and I don’t think you will be able to move the hand, but I do see that the cognitive area.

Dr. Shai Efrati 31:50
The prefrontal or frontal, I can see that then we can have some benefits so it improve, that your cognitive will improve, Some of the people say ‘Okay, so I don’t want the treatment. On the other hand, there are people who don’t care about the physical movement, they care only about the cognitive which is which is also good. So I’m not judging, our job is not to judge. Our job is to explain some set the expectation and then follow the decision, as long as it’s rational, that’s the way to perform medicine, that’s the way it is.

Dr. Shai Efrati 32:33
That’s the way we when we are doing enhanced medicine, and that’s what we discuss, also part of it in the book, that’s the way medicine should practice, we are not coming above you ‘Do that, do that, don’t do that, don’t do that, what do you mean? Now, in addition to that, you know, I have, for example, two hearts, one heart is as a physician, and the other heart as a scientist, and if you will come to me as a scientist with a lot of question for many of them, my reply to you will be ‘We don’t have enough data, we need to do more research. Is it scientist?

Dr. Shai Efrati 33:15
But if you come into me as a physician. You’re asking me based on the data and the knowledge that we have now, what can I do? You’re not asking me, do I have enough research? Not enough research, he said ‘Sased on the data and the knowledge that I have now, what can I do? Explain it to me in the language that I can understand. And you don’t have to wait now, 20s, 30s, until I will have additional that’s good to say we don’t have enough, but I’m sick now, I want you to help me now ‘What can I do now? If I was your brother, if I was you, what would you consider doing?

Dr. Shai Efrati 34:05
Okay, that’s the two element, and we tend to forget that, and we tend to forget that our job as the physician is not to present the system, our job as the physician is to present the patient, even though we get the salary from the system, okay. But still, our job is to present you, you in your condition ‘What can you do? You are going to the court. You will take your own lawyer, okay, you’re going to the tax authority.

Dr. Shai Efrati 34:35
You will take your own advisor with you. And he will tell you what you can do, what are the risk, what are the benefit? What has been exposed to you? Anything? No way that you can understand. And that’s our work, and when we tend to forget that. So, let’s keep that in mind.

Bill Gasiamis 34:57
It’s the right way around, usually often many stroke survivors will report to me, and my experience when I was going through all of my health issues was and in one of the hospitals, I felt like I was in the hospital. They were and the doctors were talking about me at the end of my bed, they weren’t including me in the conversation, and I felt like I wasn’t part of the decision making process. And in fact, I had to leave that hospital and seek another another neurologist and neurosurgeon, and get a different approach.

Bill Gasiamis 35:35
And then the approach that I enjoyed was the one that you said, which was I was part of the discussion, I was part of the team, the information was presented to me, this is what’s possible right now. We waited because what was possible at that early stage in my in my diagnosis was not conducive, it was not suitable for me, and what I didn’t feel comfortable for it. So we waited, and we had another discussion a number of years later, and then the other discussion, the decision was made to have brain surgery, etc, and it’s what you’re describing.

Bill Gasiamis 36:10
It’s I resonate with what you’re saying, because it’s really important. But some doctors are not and not where you are. Did you need to pause for a moment?

Dr. Shai Efrati 36:23
No, I’m okay now.

Bill Gasiamis 36:25
Yeah, some doctors are not there, they’re not at that stage where you are with that kind of approach and the way that you’re supposed and the way that is better to interact with the patient, it’s a relationship.

Dr. Shai Efrati 36:41
Yeah, we people are getting into the medical school mostly because of the grades and not social communication, it’s a social work.

Bill Gasiamis 36:56
Well, look, we appreciate that.

Dr. Shai Efrati 36:58
Want them to remember and also patient, if you don’t, you have not been approaching that way, and you need that. You feel that it’s not good change the physician. It’s easy for me to say I’m physician, okay. There are many physician some are good for you, some are less good for you. Choose the one that you feel comfortable with, it’s especially with stroke, post stroke rehabilitation.

Dr. Shai Efrati 37:27
It’s a journey, it’s not a magic. It’s not that you are going to a surgeon that will take your appendix out and you will never see this physician anymore, or whatever it is. It’s a journey, you need a colleague, and it’s a colleague. It’s not something about it’s a colleague that can go with you along the way, and if you don’t like this colleague, okay, so change it, go to another one.

Bill Gasiamis 37:55
Totally, it’s also our responsibility to take the lead in that relationship as well, and make sure it’s the right absolutely.

Dr. Shai Efrati 38:03
It’s your body, you should take control, you should learn by yourself, you should do the investigation, and everybody should dig in and find what’s good for him, and if you don’t understand, ask, and if you don’t understand, ask somebody else.

Bill Gasiamis 38:23
Yeah, I agree.

Dr. Shai Efrati 38:25
Just learn it, that’s the way to do it.

Bill Gasiamis 38:29
I agree. You mentioned a little bit earlier, enhanced medicine. At the beginning of chapter one in your book, you talk about enhanced medicine, or the dawning of enhanced medicine. What is enhanced medicine describe to me.

Dr. Shai Efrati 38:44
So I will try to give several simple example. When we are doing enhanced medicine, we are not targeting a specific receptor of a specific molecule, we are actually want to trigger a cascade of event that will culminate in a better functionality of the tissue and the body. And I will give simple examples, if you have infection, viral or bacterial infection. Let’s say you had viral infection, if you get antiviral medication or antibiotics, this is classical medicine. However, if you give him vaccination, this is enhanced medicine, because what you are doing.

Dr. Shai Efrati 39:35
You are exposing the body to a virus or a bacteria that is weakened, and then the body is been triggering to induce all his immune system, a full casket of events. So when you will meet the virus of the bacteria, you will be ready for that. So antibiotic is a classical medicine, and vaccination is enhanced medicine. So that’s enhanced medicine, it’s so in enhanced medicine, there are several principle the first principle is first, like we said ‘Now understand what we are dealing with. Okay, you don’t give just something and see what’s going on, you have to understand the biology.

Dr. Shai Efrati 40:22
You have to measure, think objectively, understand what you are dealing with, find the bottleneck that prevent from the tissue for appropriate functioning, and open the bottleneck. Once you’re opening the bottleneck, there will be a flow of things that will happen, okay? That’s enhanced medicine. Another element in enhanced medicine is we are not targeting the normal, usually in medicine, you are targeting the average for the individual age and sex.

Dr. Shai Efrati 40:57
So if, for example, you are 17, you’re saying ‘You know, I feel that my cognitive is declining, you will go to the physician, you will do tests. He said ‘Yeah, it’s, it’s probably declined, but you are according to your age, so it’s normal. I don’t have the legitimate treaty. Who cares about the normal? Who wants to be normal? We want to get the maximum from our biology. And it doesn’t matter if you are an athlete or whether you are CEO, whether you have engineer or other human beings that want to get the maximum from his biology. So we don’t care about the normal, this is on the one hand.

Dr. Shai Efrati 41:37
On the other hand is, even if we don’t reach the normal it’s still a goal that can be beneficial for the individual. Think about somebody who had a stroke, cannot speak, cannot move the hand, cannot move the legs, and after you’re doing on the evaluation, you figure out that there is a chance that this individual will be able to move the finger, if you are dealing with classical medicine, moving the finger is not good enough, so he will probably not be treated. However, for the specific individual, moving the finger can make a whole world change.

Dr. Shai Efrati 42:22
Indeed, you can say ‘Yes, or No. You can tell him that you feel pain, don’t feel pain. You can ask somebody to scratch your bag just by moving the finger, which can be amazing thing for the individual. So, the normal is not the target, not if you’re the normal, or if you cannot reach the normal, so that’s that’s what it is. Now, once you have all of that, the new developing a treatment program plan that will get you to the desired goal, then you sit with the client, setting up the expectation, and then take it forward, that’s in general.

Dr. Shai Efrati 43:07
So of course, what we just say, the hyperoxy hypoxic paradox, is a very powerful element in enhanced medicine. But it’s not only that, there are additional stuff, you know, the diet is very important, and not only what we eat is also when we don’t eat, which is important, the intermittent fasting and all of that. So that’s that’s enhanced medicine, that’s the way we practice medicine. When I’m saying we I mean our clinic in Israel.

Dr. Shai Efrati 43:41
All the clinic that been affiliated to us, you spoke with Amir, is located in Florida, Doctor Haddany. There is also a very successful clinic even in Dubai. Okay, well, the physician will train by us, and we are working in collaboration. So that’s, that’s the core of enhanced medicine.

Bill Gasiamis 44:00
So what it is, you know, for a lack of a better word, and to use a word that’s often overused, it’s holistic. It doesn’t just look at the symptom, and to provide a medical, a medicine to deal with the symptom and to get you a result that is either normal below normal, it’s, it’s actually about creating an environment for a far more optimal outcome than would normally be expected.

Hyperbaric Oxygen Therapy for Stroke Recovery

Dr. Shai Efrati 44:35
It’s a program, it’s a program. It’s not, the one thing you know we are, we have a complex creature.

Bill Gasiamis 44:48
Luckily, it’s not the one thing, it’s not that the doctor’s going to have the magic pill that’s going to solve all our problems. We’ve got to, we’ve got to take responsibility for our diet, what we eat, what we don’t eat, for our environment.

Dr. Shai Efrati 45:01
What do you perform? What do you do? What is your desired goal, where you are now, this is your biology, so we need this intervention in order to improve it. And also know what is our ceiling effect, what we cannot reach? So that’s also important. For example, if I would like blue eyes, okay, that’s a nice wish, nice biological wish, probably will not happen, not now.

Dr. Shai Efrati 45:02
So, you need to set the expectation, and once you agree on the program, once you agree on the goals, and once you know that you have a good chance to achieve this goal, and everything is clear, then you start with the journey together.

Bill Gasiamis 45:46
We got distracted before when I asked you about the dosage, it sounds like what you’re talking about then is the dosage might vary for the different situations conditions, for a gentleman who has cognitive decline at 75 it might be a different dose for somebody who’s a stroke survivor at 45 it might be a different dose, a different process. Tell me about how it’s different for, say, stroke, concussion and fibromyalgia, I know there’s going to be a different approach, right?

Dr. Shai Efrati 46:15
Yes. So I will say some general things so people can take home except from dealing with individual there are some general wolves that holds for all the wounds in the brain and all the things that you just mentioned, of all wounds in the brain. So generally speaking, if we want to achieve a significant neurogenesis, generation of new neurons and significant angiogenesis. Generation of new blood vessels in the brain, we need something like 60 session, Six-Zero, session, daily, session, five times per week, each session, it’s two hours.

Dr. Shai Efrati 47:03
That’s how it takes for the brain tissue to get you into a new position when the tissue can actually change, of course, that per individual there is fine tuning based on what you see at the beginning or at the end. But if somebody is coming because of a wound in the brain, we will not start unless he committed to the 60 session. Just like somebody will come to you with the peripheral wound that was not recovered in the last year, and he will say ‘Okay, I if I will not see results tomorrow, I don’t want to continue. Okay, tell him ‘I don’t want to give you even one session.

Dr. Shai Efrati 47:46
Because nothing will happen in a day and not in two and even not one week. It takes time, and in the brain, it takes more time, it takes more time, and we want you to be also at the position when you have repaired the tissue, meaning that when we are stopping the treatment, the repair tissue will stay with you, there won’t be any regression afterwards. And that’s why we need the time, and that’s why if somebody coming in, he needs to be committed to at least 60 session, five times per week, two hours at each session.

Bill Gasiamis 48:28
Okay, and they’re so what’s the they turn up? Do they have to do anything before they turn up? Do they have to do anything before they leave? Is it literally just walk in, sit down, put the mask on, take it off, etcetera, and then go home. How do people manage that whole process?

Dr. Shai Efrati 48:47
So if we are doing clinical study, that’s what it is, that’s the only intervention. But if you are coming to our treatment, then we want to take advantage of this amazing period that you have an amazing regenerative capacity ‘Okay, your ability to repair is very high. So based on the problem that we will see in your brain, we will give additional stuff. That’s why I’m saying it’s a program. So if it’s a problem in cognition, while you are sitting in the chamber, we will ask you to do some cognitive training that will trigger the specific brain regions that we want.

Dr. Shai Efrati 49:30
Because we want more stem cells to go over there if you have a motor problem. Also, we will ask you to do some stuff so more stem cells will go over there and so on and so forth. So once we are realizing what is the target tissue, then we want to trigger that tissue even more. So in addition to being in the chapel, we will ask you to do additional stuff to get the most benefit that we can get to you, but this is per individual.

Bill Gasiamis 50:00
Yes, okay, wow, that’s amazing. So there is not only it’s not a passive exercise, it’s a very active exercise that you have to do. You have to be aware of the right environment in your life. You have to make sure you’re eating the correct things and not eating certain things. You have to make sure you’re not smoking and not drinking. You have to turn up and be willing to participate. And you have to be willing to participate for 60 sessions, five days a week, with two days off, for two hours each session, over 12 weeks, you have to really commit to your health and well being.

Bill Gasiamis 50:42
I see it as a you know? I see it as something that is difficult for a lot of people to be able to step out of life for that period of time, for 12 weeks. Has there been any evidence to show any success in breaking that program up over a longer period of time or over a different kind of process.

Dr. Shai Efrati 51:10
I will tell you something in general, you know Formula One?

Bill Gasiamis 51:16
Yeah, yeah.

Dr. Shai Efrati 51:18
Car Racing, every second count.

Bill Gasiamis 51:20
Yeah, indeed.

Dr. Shai Efrati 51:23
But if you are professional, you will make a stop at the pit stop, not because you have an accident, because you know that if you will not do that, you will not finish the race. But these are professionals. So you have to invest in your health and your biology if you want to get the maximum of it. So if you are a professional, you will make a stop at the pit stop, okay, if not, you will end up at the garage again.

Dr. Shai Efrati 52:04
Everybody can choose whatever he wants, everybody can choose what. Either you professional and you want to stay in the game, you will make a positive pit stop, invest, invest. You know what happened when you’re at the Pit Stop? You’re losing time. A lot of people are jumping on you, you’re changing but nothing happened. The car is still functioning, very good, yeah, if not, okay, I will meet you in the garage, and then you will have all the time of the world, then you will have all the resources available, but you are crushed. So, everybody can make his choice and his way.

Bill Gasiamis 52:45
There is a saying I think it goes something like ‘You have to pay to support your health now, because if you don’t pay for it now, you’re definitely going to pay for it later, one or the other to invest?

Dr. Shai Efrati 53:03
Yeah, yeah, it’s either you are investing in your health.

Bill Gasiamis 53:07
Invest in your health now or you gonna have to lose.

Dr. Shai Efrati 53:12
Managing disease, or you’re managing health, one of the two you’re managing?

Dr. Shai Efrati – Long COVID and Its Treatment

Bill Gasiamis 53:16
Yes, that’s it. That’s what I had in mind, when I was saying that, I understand completely. I know that.,I’m asking, just in case other people are wondering, well, you know, that’s a big, a big investment. You know, how am I going to take three months out of my time to do that?

Bill Gasiamis 53:33
But it’s three months that could change your life for the better, for the long term, and give you high quality of life and make it so that when you’re older, your life is, you know, not so much, not so much a disease and discomfort. It’s less disease and discomfort, that’s really what it’s about.

Dr. Shai Efrati 53:53
Yeah, you know, we are coming for this world, for a journey, so as long as we enjoy the view, feel the air, enjoy the smell, it’s a nice journey. But if you’re sitting in a car locked inside black windows, just sit inside that kind of journey, I assume you and me will not want, and people are not realizing your we are not dying, just dying, it might happen, but usually you suffer a lot before of them, and there are people after severe stroke or people with dementia and alzheimer that are coming to us and saying ‘I want you to help me.

Dr. Shai Efrati 54:43
I will give everything for you, I will sell my house, I will do that same. Now, it’s too late, yeah, but I will do that. That’s too late, but what about your kids? Okay, so they need to handle Omega. Manage their health in an earlier stage, and that’s the way, that’s the way I think should do it, and if somebody don’t wants to do it, okay, whatever you choose is okay, as long as it’s your decision.

Bill Gasiamis 55:14
Yeah, that’s true, very true. In the book, you also talk about post traumatic stress disorder, long COVID and Alzheimer’s disease. Let’s talk about long COVID, and let’s see if you can maybe just explain to me what it even is, because we hear about it, and there’s a lot of people that are experiencing neurological deficits after Long COVID. Can you explain a little bit about what Long COVID is and how you guys treat it?

Dr. Shai Efrati 55:46
Yeah, so long COVID refers to symptoms, mostly cognitive, neurocognitive, which is memory, information processing, speed, mental issue, which is also the brain. Okay, that persists for more than six months after the acute infection, I will focus in the brain, because that’s your podcast. So so the virus can penetrate the brain in two ways. One way is here through the cribriform plate. The cribriform plate is the bone above our nose is penetrated, so that’s how we smell, and the virus can penetrate through this holes that we have in the scalp.

Dr. Shai Efrati 56:38
It can bind to the neurons, inject the genetic material into the neurons and into the mitochondria of the neurons, and then the neurons are malfunctioning, it can also bind to the glial cells. The glial cells are the cells that support and keep the environment so the neurons can function in in an optimal way. The glial cells may have ace two receptor it can bind to the receptor and cause gliosis, inflammation of the glial cells, and then it’s damaged, since it’s usually the frontal lobe.

Dr. Shai Efrati 57:08
So shorter memory, our ability to concentrate attention, information processing, speed, and even what we call mood or mental issue, Also in the frontal lobe and then, and then that’s been damaged. So that’s way of one way of penetrating. The other way of penetrating is through the bloodstream for those who doesn’t have luck and it just lack the virus can penetrate through the bloodstream on the endothelial cell, the cells that lie the layer of the blood vessels. We also have ace two acceptor so the virus can penetrate, bind to that and activate the coagulation system.

Dr. Shai Efrati 57:51
And then we have, because microscopes, all over the brain. So in many of the long COVID patient, when you look at the brain, you see like somebody at the age of 70, 80 with tiny stroke that happen all the time, and of course, the reflection of it will be the clinical function that is related to that area. So a lot of people may suffer from cognitive decline, memory, attention, information processes with somebody who used to answer 100 emails per day suddenly answer five a fatigue. Fatigue is a clinical symptom of that, why?

Dr. Shai Efrati 58:33
Because the machine is not working the way it’s supposed to work. So what we did, when we realized that from our perspective as the first part of our discussion, it’s a wound, and we are dealing now with wounds, the wounds was caused by by a virus, but, but it’s a wound. So which characterize the brain, and if we see the kind of injuries that we are looking forward now that we can help, then we are giving the treatment, and based on this, you will have the improvement, as simple as that, okay, it’s, it’s, you see the wound you treat. The wound is a tissue, you remember.

Bill Gasiamis 59:15
So, COVID has created a wound, the virus is no longer active, the body has mostly dealt with that, but now we’re dealing with the aftermath of what the virus did while it was in the body.

Dr. Shai Efrati 59:28
True, absolutely true, and you know, something very interesting in those days, COVID is not sexy anymore.

Bill Gasiamis 59:38
No.

Dr. Shai Efrati 59:39
Unlike in the past, you don’t have it in the news anymore, but still, there is Long COVID And we starting to see an increase in the dementia rate in in young individuals, and more than that, the physician today, unlike in the past, does not ask about COVID anymore. Some countries, I don’t know how it is in Australia, even if you want to do a COVID test, it’s not easily done anymore.

Bill Gasiamis 1:00:11
No.

Dr. Shai Efrati 1:00:11
Okay, you have to struggle to find a place to do it. All the long COVID clinic that were in each hospital have been closed. So these people don’t have even the diagnosis anymore. So suddenly you have some mood problems, suddenly fatigue, suddenly reducing cognitive performance. It’s not suddenly, it’s long COVID, but nobody makes the diagnosis anymore, because nobody checked for COVID. Nobody asked you about COVID anymore, but that’s true, it’s all over.

Bill Gasiamis 1:00:52
Well, hopefully we’re creating some awareness around that, and I really appreciate that explanation, because that’s been a very big conversation, and a lot of people don’t understand exactly what it is and why it’s a thing, and they, I think they still misunderstand it, and believe that perhaps some virus is still occurring in the body. And they don’t particularly understand what it’s done and how it’s worked, but that really does explain it. Thank you for that. So, your book seems to be very comprehensive.

Dr. Shai Efrati – Aging and the Importance of Being Needable

Bill Gasiamis 1:01:23
I love the things that you talk about in your book, the subjects, the particular neurological conditions that you talk about, but then you talk about some other things towards the end, in part three, the evolution of aging. You know, we talk about that aging is a good thing ‘Okay, that’s rare to hear. Not many people say that. Why is aging a good thing?

Dr. Shai Efrati 1:01:46
First of all, aging started the day that we are born, and even before, yes, okay, aging, it’s not from a certain age. It’s a process, and along the aging process, two major things that happen, you know, our functionality depends on two major element. One of them is the physical performance, physically pure physical strength, breathing, cardiovascularity, pure physical. And the other thing is the knowledge and the wisdom that we gain a long life and in life when we are young. The bottleneck is we have an amazing biology.

Dr. Shai Efrati 1:02:35
But the bottleneck is the knowledge and the wisdom that we have and long life, we are gaining more knowledge, more wisdom, and then the biology become the bottleneck, but that’s easy that we can open, and that’s what we discuss in the book. So if you will tell me shy, if you want, you can go back to be 18 years old, I will tell you ‘No way, I don’t want to be there, I was stupid, I did some terrible things. My perspective on the world was not the best.

Dr. Shai Efrati 1:03:09
My testosterone was high. I was just looking for for to do some stuff, I don’t want to be there, I want to be exactly where I am now, and I want even to continue to gain more knowledge, more wisdom. All I need to do is to fix the biology, easy done. Let’s focus on that, so aging is not a bad thing.

Bill Gasiamis 1:03:36
Yeah, I agree with that.

Dr. Shai Efrati 1:03:38
We are privileged to gain more data and more knowledge, we are privileged to have more wisdom.

Bill Gasiamis 1:03:45
I agree with you. A lot of stroke survivors will tell you that they are privileged to have an extended life, because there was a chance for a lot of the stroke survivors who have been on my podcast, who I talked to, that they weren’t going to be around if it wasn’t for the right medical intervention at the right time. You know, we could have been another one of the statistics, another one of the people who didn’t make it. So we are very privileged, I am very happy to be around and to have made it to my 50th year, to my 50 past my 50 birthday.

Bill Gasiamis 1:04:16
So my 51st year, and it was 37 when all this stuff happened. So if it was a bigger blood vessel in a different location, it could have been a completely different outcome. So I completely agree with you and and then I’m going to have to ask you about why I’m I should never retire, according to chapter 12, I should never retire, which I kind of understand, but I’d love to hear your perspective on that.

Dr. Shai Efrati 1:04:44
You know, people ask me, what is the if you need to choose one thing, okay, that will be anti aging or reverse way aging, or will cook your functionality? What it will be, and they expect me to say, you know, take metformin. Do that kind of diet. Go to hydro direct, but no, that’s not it. The first and most important thing is make yourself needable, you have to be needable.

Bill Gasiamis 1:05:23
Somebody or not should depend on you.

Dr. Shai Efrati 1:05:27
Something should be depend on you, okay? Because if you are not needable, you are disposable. And you know, another question is, how do you define an old man? Okay, so when people ask me that, they expect me to say, you know, telomere length, the amount of senescence, the biological clock and things like that. But you know, what is my definition of an old man, somebody who looks backwards? If you speak to an old man, he will tell you ‘You know, I used to do that, I used to do that, and then I did that, but I used to do that.

Dr. Shai Efrati 1:06:09
And when you are speaking to a young person, he will always tell you, I intending on doing that, after I will do that, I will do that, he’s young. It doesn’t matter how many years is on this planet? Is he has a future? Now the body is lazy, very lazy, if you don’t have a future, it will not invest in you. If you are not needable, you will nature will not invest in you, you’re lost, even me cannot help you, you’re lost, you have no meaning, nothing to to to work for, nothing to be built up for.

Dr. Shai Efrati 1:06:46
So that’s the one and most important thing, and it’s clear to you, for example, if you’re walking in a dark, dark street and you’re reaching up a corner, what will happen? The body will prepare you. The blood pressure will go out, your heart rate will go in, your adrenaline will go up, everything is ready for the next turn. Okay, that’s how the body doing the preparation, and if you are coming to your body, you said ‘You know, I need to do that, and then I will need to do that. Said ‘Oh my God, I need to be prepared to that.

Dr. Shai Efrati 1:07:16
I will, I will do my best to be ready to this crazy guy future. Because he’s serious about it, I need to be prepared. Of course, you might need some help for several points, but if you don’t have that, you’re lost, you just lost. And that’s the one and most important thing, once you have this, we can help with the other.

Bill Gasiamis 1:07:40
Yeah, that’s a really good take. I love that the old man is looking backward and the young man is looking forward, looking forward to something, or he’s going to accomplish something or achieve something, or attempt to accomplish something or achieve something. I love that. That is such a great explanation about what it means to be old, I love it. And when I reflect on the people who have been old in my life, that’s what they’ve done. They’ve reflected on the past, and they haven’t really spoken about what the future holds and if it holds anything at all, and that’s very telling.

Personal Regimen and Lifestyle Advice From Dr. Shai Efrati

Bill Gasiamis 1:08:19
I’m going to pay attention to how people speak to me from now on in that manner, and I’ll know whether they’re young or old. Now, speaking about age, you look very youthful for your years, I imagine that hyperbaric has something to do with that, you must have a personal regimen. Can you give us a bit of an understanding of what Dr. Efrati might do for.

Dr. Shai Efrati 1:08:51
For himself?

Bill Gasiamis 1:08:52
For himself? Yeah, cuz you can’t just talk the talk, you have to walk the walk.

Dr. Shai Efrati 1:08:57
Exactly and practice what you preach. We’ll never, I will never ask somebody to do something that I don’t do. So the basic elements of the things that they do, for example, the first thing is, don’t put junk into your body. Okay, just like you will not put junk into the engine. You will look at your gum to fill the engine. You see Jack, you say ‘No, no, no, no, no, I’m not putting that in my engine, It will destroy the engine. However, you still take, take the junk into your personal engine. So be respectful for that, and don’t put junk in your body this.

Dr. Shai Efrati 1:09:38
This is one for squatial elements. The other thing is, this body was not built for refrigerator, meaning it was built you know, you’re living in the jungle, you hunt something you eat now go in and find yourself something else to to eat, it will take you a couple of months, a couple of days or hours, but it’s not a refrigerator, so it’s highly important to have period of time that you don’t eat, okay, and once you are that’s what we call intermittent fasting. So I’m doing the 16/8, 16 hours not eating, eight hours eating, you can drink, really, and the reason for that is not losing weight.

Dr. Shai Efrati 1:10:24
People mistakenly thinks that’s for losing weight, no, it’s for Auto Fauci. Auto Fauci, there is a nobel price on it. Once you are not eating for more than 12 hours, then the cells starting to eat the junk that was accumulated within the cells. Just like you will go to the refrigerator, open the refrigerator, you will see a cake, and you will see the vegetables. You will go for the cake, you are opening again, you will see again the cake, you will go to another cake, another cake. What will get to the vegetables? It will get rotten and smell okay?

Dr. Shai Efrati 1:11:00
The same in our body, okay, but if you don’t have the cake, you will eat the vegetables. So again, the junk is being accumulated at the cellular levels and and they got rotten and smelling, so you need period that you don’t eat. That’s for the auto Fauci. There are several protocols with related to that. I’m doing the 16 end. If you want to keep your fitness, then you should not sit in hotel all day or be a potato cow. You need to activate, generate the demand so the body will build itself, so that’s another element that I’m doing.

Dr. Shai Efrati 1:11:39
And of course, I’m doing to myself, the hyperbaric protocol, the hyperoxic hypoxic paradox. And I started, we did something like 18 years ago when we finished the first talk study I was looking at on the brain scans, and I said ‘Oh, my God, what? What happens here? I see neurogenesis, I see angiogenesis, what the hell was going on here? And when I looked at you said ‘Wow, got it. First of all for me, just like the plant that is crushing and, you know, the oxygen, you know, they tell you first put the oxygen on yourself.

Dr. Shai Efrati 1:12:21
So since then, I’m doing it for me, and another thing is be professional. Evaluate yourself in objective measure. If you’re evaluating the brain, this is your brain now, this is your cognitive this is your physical performance, re-evaluate anything you do, re-evaluate and then optimize best based on yourself. So that’s generally the core of what I’m doing, and if people wants to dig more into those things, it’s all in the book.

Conclusion and Final Thoughts From Dr. Shai Efrati

Bill Gasiamis 1:12:57
Fantastic, where can people find the book? Is it available?

Dr. Shai Efrati 1:13:04
Amazon, people can see it on Amazon.

Bill Gasiamis 1:13:08
Show us the book again ‘Beyond normal, how the new science of enhanced medicine elevates peak performance and repairs brain injuries. Okay, the links will be in the show notes, people will be able to very easily find it by putting your name, Shai Efrati, MD, into Amazon, or typing the title of the book, they’ll be able to find it and get more information. I really appreciate your work, and I really appreciate your insights. Thank you so much for joining me on the podcast.

Dr. Shai Efrati 1:13:42
It’s a privilege.

Bill Gasiamis 1:13:43
That brings us to the end of this episode with Dr Shai Efrati. His groundbreaking work on hyperbaric oxygen therapy and its ability to mimic hypoxia, triggering the brain’s natural repair mechanisms, offers hope and practical insights for stroke survivors looking to improve their recovery outcomes. Before we wrap up, I want to thank everyone who’s been a part of this incredible recovery after stroke community, your support, comments and feedback on YouTube, Spotify and iTunes are what keep this podcast going. If today’s episode inspired you or gave you a new perspective.

Bill Gasiamis 1:14:21
Consider leaving a five star rating on Spotify or iTunes, or add a like and a comment on the YouTube video. It truly helps others find the podcast and discovering the same hope and encouragement you have found here. If you’re interested in learning more about hyperbaric oxygen therapy. I encourage you to check out Dr. Efati’s book ‘Beyond normal, how the new science of enhanced medicine elevates peak performance and repairs brain injuries.

Bill Gasiamis 1:14:52
The link is in the show notes. And finally, if you’d further like to support the podcast, consider becoming a Patreon, go to patreon.com/recoveryafterstroke. Every contribution helps me bring more stories, resources and hope to stroke survivors around the world. Thank you for listening today. I can’t wait to bring you more inspiring stories and insights in the next episode.

Intro 1:15:18
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website, or content, is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:15:48
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:16:12
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 1:16:39
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The post Dr. Shai Efrati on Hyperbaric Oxygen Therapy: A Game-Changer for Stroke Recovery appeared first on Recovery After Stroke.

When I asked stroke survivors, “Does ego interfere with your recovery? And if so How do you manage it?” their responses were powerful, honest, and deeply insightful. This simple question opened up a flood of raw emotions and personal stories from survivors who have wrestled with the role of ego in their healing journeys. For some, it’s been a constant struggle; for others, it has shaped the way they approach their recovery. Through their responses, a common theme emerged: finding the balance between pride and humility, and learning how to let go of past identities to focus on the present.

One survivor shared, “Oh my goodness! Yeah, totally! Being used to performing at such a high level, and coming from a family that values pride, I feel like I still have so much to learn about letting go of the things I can’t control. But it’s so hard sometimes!” Despite this, they stay grounded by focusing on gratitude. “I keep thinking, I’m so grateful to be alive, and that’s all that matters.” This mindset shift helps ease the burden of ego and keeps the focus on what truly counts—surviving and thriving.

Another survivor, who was once very athletic, expressed how ego played a major role early on in their recovery. They said, “I thought because I was in such excellent shape, my recovery would be faster. It’s been a hard pill to swallow, but I’ve learned patience, empathy, and grace for my body.” Learning to let go of old expectations and accepting the reality of their new capabilities has been crucial for their mental and emotional well-being.

For some, ego presented itself in the desire to return to their pre-stroke lives as quickly as possible. One survivor remarked, “I just want to be my old self, to walk without my walker, to jump out of bed, and gulp my Diet Coke. Alas, that leads to falls and choking, reminding me of the day my life changed.” In these moments, they are reminded of the need to set new boundaries and redefine what success looks like post-stroke. As another survivor put it, “It’s humbling, but I’ve learned to be grateful for the small wins, even if they come slower than expected.”

Gratitude emerges as a key theme for many survivors when it comes to managing ego. One survivor shared, “When I focus on gratitude, it seems to squash the ego. Hey, I’m alive, and that’s all that matters!” Another echoed this sentiment, stating, “Gratitude is such a game changer for me too.” By focusing on what they’ve gained rather than what they’ve lost, survivors are able to move forward with a more positive outlook.

But ego isn’t always a negative force. One survivor shared how their pride pushed them to try harder, even when it was difficult to ask for help. “For me, ego definitely does get in the way. I’m too proud to ask for help, but it also pushes me to try harder.” This delicate balance between pride and humility is something many survivors struggle with, but it can also serve as a motivator to keep pushing forward in their recovery journey.

Another survivor reflected on how ego manifested as guilt and sadness. They said, “I was the person everyone leaned on before my stroke, and I felt guilt and sadness initially. It wasn’t so much ego, but rather the label I had placed on myself over the years. The stroke changed me so much that I couldn’t be that person anymore. But I’ve learned to set boundaries better, and I’m also better at asking for help.” This shift in mindset has been essential for their emotional healing, allowing them to redefine their role and their value in new ways.

Perhaps one of the most powerful lessons shared comes from a survivor’s husband, who had done significant personal growth before his stroke. His wife shared, “He was an influential and powerful man, physically very capable. But I was so awed by his willingness to let go of how others saw him. He said it was an energy drain to do anything but be with what was and feel how he felt.” This approach allowed him to connect with his true self, the part of him that remained unchanged by the stroke. His ability to embrace the changes in his form and image became the key to his recovery.

In the end, managing ego in stroke recovery is not about erasing pride or ambition, but rather about finding a balance. As one survivor eloquently put it, “There always needs to be a sense of self, but it shouldn’t tilt off balance. You shouldn’t think poorly of yourself or think you are more than others. That balance is key.”

For those still wrestling with their ego during recovery, remember this: You don’t control what happens to you, but you do control how you respond. Focusing on gratitude, accepting your new reality, and setting boundaries are powerful tools in managing ego. At the same time, don’t be afraid to let your pride drive you to work harder—just remember to celebrate the small wins and practice grace along the way.

Support the Show on Patreon

If these episodes have helped you or a loved one in any way, please consider supporting the show through Patreon at patreon.com/recoveryafterstroke. Your support keeps the podcast going and allows me to continue sharing these valuable stories for stroke survivors and their families. Every contribution helps us bring more inspiring stories, helpful insights, and essential resources to those on their recovery journey. Thank you for being a part of our community and for helping make these conversations possible.

Thank you for tuning in. If this resonated with you, feel free to share your thoughts in the comments below. You’re not alone in this journey, and together we can continue to grow, heal, and find meaning in life after stroke. Stay strong, and remember: You’ve got this!

The post Managing Ego in Stroke Recovery: Lessons from Stroke Survivors appeared first on Recovery After Stroke.

Be inspired by Pete Rumpel’s holistic recovery journey after a massive stroke. Discover his approach to healing and resilience today!

Support The Recovery After Stroke Podcast Through Patreon

Highlights:

00:00 Pete Rumpel’s Introduction and Initial Stroke Details
04:06 Symptoms and Initial Reactions
07:16 Hospital Experience and Initial Recovery
13:00 Holistic Recovery and Emotional Impact
19:42 Lifestyle Changes and Physical Recovery
41:03 Support System and Community
58:21 Emotional Growth and Listening Skills
1:08:47 Final Thoughts and Advice

Transcript:

Pete Rumpel’s Introduction and Initial Stroke Details

Bill Gasiamis 0:00
Hello everyone, and welcome to episode 330, of the Recovery After Stroke Podcast. Today, I’m thrilled to introduce Pete Rumpel, a hemorrhagic stroke survivor who embodies resilience and determination. Pete’s recovery journey is nothing short of inspiring, as he shares how he overcame the physical, emotional and mental challenges of stroke, from adapting to life after a major stroke to embracing a holistic approach to recovery, Pete’s story is filled with lessons on persistence, gratitude and personal growth.

Bill Gasiamis 0:35
Just before we dive into Pete’s journey, I’d like to thank everyone who supports the podcast, if these episodes have brought you hope, insight or encouragement, consider supporting the show on Patreon, at patreon.com/recoveryafterstroke, your support allows me to continue sharing these powerful recovery stories with stroke survivors worldwide. Thank you to all the listeners and supporters, it means so much to me.

Bill Gasiamis 1:05
Pete Rumple, welcome to the podcast.

Pete Rumpel 1:08
Thank you, Bill. It’s great to meet you.

Bill Gasiamis 1:10
It’s great to have you here. Tell me a little bit about what happened to you.

Pete Rumpel 1:15
Well, on December 10 of 2022 I had a massive hemorrhagic stroke, and fortunately, my girlfriend at the time had been a nurse for many years, recognized it, called the people and the first responders who were awesome, and I was thank God I was staying at her place, because it was about 15 minutes away, and it was dramatic. So I’ve been recuperating. I’ve been about 21 months almost to the day, and, you know, I’m just tackling everything I can.

Bill Gasiamis 2:10
Yeah, dramatic. So what caused the bleed? I know there must have been a blood vessel that burst, but what was the underlying cause?

Pete Rumpel 2:20
I had everything, Bill. I recently been divorced, I was in a high-stress job dealing with private equity companies, and I had the kids living with me like it was a stress sandwich and I wasn’t eating right, was definitely drinking too much, and it caught up with me a lot of what you talk about, and made a lot of changes that following day. So we move forward.

Bill Gasiamis 3:03
I call it the perfect storm.

Pete Rumpel 3:05
Yep, I’ve used your vernacular.

Bill Gasiamis 3:08
Yeah, and then it catches up with you, and then you end up in hospital on the day of the hemorrhage. What did you notice? How did it come about, like, what were the symptoms?

Pete Rumpel 3:23
I didn’t really notice anything that day Bill, now that I look back when I’ve heard a lot of what you talked about, it’s clear there were signals for a while when I look back at photos of myself, I’m like ‘Oh God. Like, then all of a sudden, people come out of the woodwork, you know ‘Hey, by the way, you weren’t looking good. And very much similar to you, Bill, I wouldn’t have listened. I was in my own universe, doing my own thing, and you know, got the humbling.

Pete Rumpel’s Symptoms and Initial Reactions

Bill Gasiamis 4:06
Wow, divorce is hard for people always right? And then add that to a really high stress job and the normal parts of life, it’s much, much harder. Had you been the kind of person who had the skills to deal with that much stuff all at once? Or are you just a normal guy who found yourself too far into the deep end and then you had no way out, and you had to use alcohol, for example? Or, you know, how did you find yourself in there?

Bill Gasiamis 4:42
Now, you know they say that the way to boil a frog is to turn up the temperature one degree at a time. The frog doesn’t notice, and then all of a sudden it’s floating like how did you get into that point of life?

Pete Rumpel 4:58
I think, you know, Bill. It’s just like what a lot of the people that I’ve heard discuss it, it kind of, in a way, it sneaks up on you. There were a lot of things that led to it, but they don’t happen in one day. You know, I had been a drinker, but functional, I had a lot of responsibility, and I always, tucked it in as part of my day, but now I started to eat out a lot, I had a lot of pressure. I was doing another thing I hear a lot from the people on your podcast, you know I was focused on me last, do everything else first, and you know that had to change.

Bill Gasiamis 6:12
Yeah, so you’re the person who’s the most important, but you’re the one that’s getting the least care.

Pete Rumpel 6:21
Yes, and I have very good friend of mine out in the west coast, Michael Geller. And he had said time and time again, you know, as much as I like to do different things, I have to take care of number one, or else the rest don’t get taken care of, and I deviated from that, and so I was always surrounded by good people that I could learn from, but I got too far out on my out on my skis, if you will.

Bill Gasiamis 7:01
Who else was around in the family, was there in a family, an extended family? Who else other people that need love, care, support that you were kind of also responsible for at that time?

Hospital Experience and Initial Recovery

Pete Rumpel 7:16
Well, my kids, but they’re wrapped up in their stuff. One of my daughters had gone off to college out in Hawaii, the other one was wrapping up high school, my sister was near me, and she is awesome, and she kept telling me ‘Pete, you’ve gotta, you gotta do better, you gotta go the doctor. You’ve gotta do things. I was like ‘I’ll get there. I’ll get there. And, you know, when I went, I went with the bang.

Bill Gasiamis 7:55
So how did you get to hospital? Did somebody, did you get picked up by an ambulance. What was that event like? What actually happened on the day of the incident?

Pete Rumpel 8:07
Yeah Bill, it was a ambulance and my girlfriend at the time, called them to come. I was getting up early as about 4 in the morning, I was going to head home, and they came instead. And I was really lucky that I was at her place, and I was really lucky the hospital was right down the road, and she made the call for me. So it’s basically saved my life.

Bill Gasiamis 8:39
How long did you spend in the hospital?

Pete Rumpel 8:44
A month.

Bill Gasiamis 8:47
What were the deficits you were dealing with?

Pete Rumpel 8:49
It was the right side. So I didn’t have any movement in my arm, totally flaccid. Now I can do stuff fortunately, I couldn’t walk. I was in a wheelchair for almost six months, and that’s getting better, although it’s not pretty, and I’m endeavoring to be a community ambulator, but not there yet, but I’m working on it, and I can walk without a cane and and do stuff. I’ve even did about 15 yards of a run just to see what it looked like, and it was a little scary, but you know, again, I continue to push.

Bill Gasiamis 9:46
We’ll take a quick break here, and we’ll be back shortly with more of Pete’s journey. While you’re here, I want to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s not just my personal story, it’s a guide to post-traumatic growth after stroke, featuring insights and stories from stroke survivors like Pete, who found ways to rebuild and thrive, whether you’re navigating your own recovery or supporting a loved one who is this book offers hope, practical steps and a roadmap to resilience.

Bill Gasiamis 10:19
You can find it on Amazon by searching for my name, Bill Gasiamis, or head to recoveryafterstroke.com/book, to learn more. Yeah, What’s an ambulator?

Pete Rumpel 10:33
It’s basically like being able to be a walking citizen. They actually time it Bill, so when you’re an ambulator, it basically means you’re walking, and a community ambulator is like being able to walk with traffic lights and stuff, so you can walk efficiently and fast enough to basically mix in the population Bill, and I’m trying to do that so I don’t run the risk of another accident of a different type.

Bill Gasiamis 11:07
I love that somebody made up a formal word like that just for the sake of saying, walking around in your community.

Pete Rumpel 11:18
Absolutely, and there’s a rhyme and reason for all this, right?

Bill Gasiamis 11:21
No doubt.

Pete Rumpel 11:22
It’s just amazing how you have to dig through so much stuff to find the nuggets that that really, really help. And that’s why, again, not to be, you know, too overwhelming here, but so much of what you serve up is so helpful, and it’s been a big part of the recovery.

Bill Gasiamis 11:52
It’s always strange to me when somebody says, this is the added, this is the episode that resonated with me. I often don’t know which ones are going to resonate with who, but they do. I get some weird responses or comments like that about that podcast, and it’s all good from that perspective, but I just don’t, even sometimes I’m interviewing people, a lot of the things don’t resonate with me because I’m a different version of stroke.

Bill Gasiamis 12:24
I live in a different part of the planet, I have a different background. So can I just let people tell the story and then let everyone else find what resonates and then hopefully it helps, right?

Pete Rumpel 12:36
Amen. It’s huge because Bill, there’s so many of them that was first listening to them. I’m like, I’ve never listened to that. Two months later, I’m like, I need that. So it’s really tremendous in the way you break it down, have their transcripts so I can read some before I get there. It’s phenomenal.

Holistic Recovery and Emotional Impact on Pete Rumpel

Bill Gasiamis 13:00
Right? Awesome. Well, so you’re a very upbeat kind of guy. What’s it like to be your personality, to have your personality, you’re very, you know, happy to engage with people, talk, all that kind of stuff, and then to be sort of struck down with this thing that makes you sit on your butt for the next six months in a wheelchair, but also that month in hospital, what’s it like transitioning from who you normally are to who you became?

Pete Rumpel 13:39
Yeah, Bill, I would say, It’s great question. I would say it took me, just till probably 16 months, to smile and to laugh at all. I was in a very dark place. I always tried to treat everyone well, be empathetic, but really focusing on holistic healing. And it started to resolve. I was so focused on the physical for so long, which I think is natural, at least it was for me, but listening to so much of like you talking about how it changed your life and stroke, being, you know, in a way, a blessing. Man, it takes me, I know you said it too, but it takes me a long time to get stuff in here.

Pete Rumpel 15:00
And wow, what a difference it’s made, and I find now that and again, knock on wood, but I find now that acceleration of recovery seems like it’s happening because you have to have gratitude. You have to think about the whole picture, being thankful, and all those things. And whatever people’s spiritual go to is, and I look at and listen to all of them, it’s awesome and it’s really, it’s coming.

Bill Gasiamis 15:50
Holistic is a word that has different meanings for different people, but to make it simple for everybody to understand, in my opinion, what a holistic recovery includes is the physical, the emotional and the mental. So, you know, for somebody, holistic recovery might include physical therapy, emotional counseling, and it might mean that there is some mental recovery, mental health recovery.

Bill Gasiamis 16:23
So by mental health, what I mean is you get an opportunity to talk to people about the way you think about things, and you get to question how you think about things. So it’s about really going into your thought process and wondering, is my thought process supporting my recovery, or is it getting in the way? That’s the main side of it.

Pete Rumpel 16:47
Amen, and I’m so thankful that you’ve focused so much on that across different podcasts, because that was a big missing link for me once I started understanding that and starting to and, you know, the holistic Bill, I would even, in a way, add spiritual into those three as well.

Bill Gasiamis 17:13
Indeed.

Pete Rumpel 17:13
Because again, it’s just been really therapeutic, really positive.

Bill Gasiamis 17:25
In my emotional recovery is where spiritual recovery lies. So it’s just part of that umbrella.

Pete Rumpel 17:30
Right on.

Bill Gasiamis 17:32
Emotional is part of your heart, right? Mental is your head and your thoughts, physical is your body. So when I talk about emotional, that definitely has that sub category of spiritual there. That’s where spiritual lies, because once you access your version of spiritual recovery come into terms with your perhaps your Creator having let you down, or the universe having let you down, or whatever it is that you go to for some some guidance in those really tough times.

Bill Gasiamis 18:06
Then that enhances recovery, and it enables your head to grapple with what it needs to grapple with. Do you know what I mean? Because they get in the way, each one of them, if you don’t handle the emotional and or the mental they get in the way of recovery, both of those interact with each other, so once your thoughts about recovery change and start to support you, the emotional improves, once your emotional health improves and your spiritual side takes a right, you know, takes a good, sort of positive path, then your mental health improves.

Bill Gasiamis 18:50
So they’re not separate, they’re interlinked, that’s for them. What they both do is they both improve the physical recovery, because if you’re going to the gym three days a week and rehabilitating your leg, but all your thoughts are it’s never going to get better, and your emotional health is really tough, really struggling. Well, then what’s the point of going to the the gym and doing physical exercise for days every week? There’s no point, kind of almost, isn’t it’s counterintuitive, like it’s not counterintuitive, it’s counterproductive.

Pete Rumpel 19:25
Yep, yep. I totally agree, and I totally see how you’re looking at it. Hey, by the way, Bill, is this better on or off?

Bill Gasiamis 19:34
On.

Pete Rumpel 19:36
Okay, there you go.

Bill Gasiamis 19:37
Yeah. Does that light bother you?

Pete Rumpel 19:40
No, no, it’s fine.

Lifestyle Changes and Physical Recovery

Bill Gasiamis 19:42
Cool. What else did you have to deal with when you got out of hospital? So one day you’re working on your separation, your divorce, all the complications of that, you’re at work, working like a very. A committed man to your job, and then everything stops, and then, how does that? How do you grapple with all of the things that stopped while you’re in hospital for a month and then need to be in a wheelchair for six.

Pete Rumpel 20:19
I started doing it one day that time Bill and I was horrible at it, you know, I really was, I was horrible at it. And I just, I was very fortunate, Bill, because if I having my kids was really important, because I was like, am I going to lead by example, or am I going to be foolish, you know what? Crap, and so I said ‘Hey, look, it’s time to figure this out.

Pete Rumpel 21:05
I had been much heavier unhealthy Bill when I was in the hospital, I made a conscious decision to eat enough to survive, and that was it. So in my 30 days, I lost 40 pounds, and have continued to lose since then, I’m kind of set now, but I was over 300 pounds and I’m now 187.

Bill Gasiamis 21:38
Right? What a difference. So you made that decision in hospital.

Pete Rumpel 21:46
Yeah, because I’m like, if I don’t start now, it’s not going to happen, and Bill, listen, I don’t want to come across the wrong way, like I’m definitely a type A personality, but I’ve learned a lot, and I was really up, pardon me saying this, but shits creek, it was really ugly, it was not like, I don’t know how to describe it, but it was, it was tough learn minute by minute, hour by hour, day by day, then week by week. It was not pretty at all, and I’m now, as we talk, you’re hearing a little more of me, but that took 16 to 18 months to get back so and I, a lot of people will thank for.

Bill Gasiamis 22:52
You were 58 when the blood vessel burst up until then, how your health been? Had you spent any time in hospital for anything serious up to that time?

Pete Rumpel 23:04
No, but it was clear, I was getting further away. I used to be an athlete and do things more reg more regularly, but I started having, you know, I just got away from it, and it was a mistake, and one I will not make again, and thank God I have a second chance.

Bill Gasiamis 23:38
Did you have thoughts of mortality ‘I might not be here tomorrow, next week, whatever.

Pete Rumpel 23:45
Yeah, a lot of that, especially Bill in year one, because when you read the stats like as you have definitely hemorrhagic stroke, you know, you lose a lot of people, 25% within the day, almost 50% within a month, and then over 70%, well, 74.3% in the first year.

Pete Rumpel 24:16
Not that I pay attention to the stats, but, that you’ve seen them also, and they continue to change and but needless to say, I’m like ‘What’s the other shoe that could drop? Which is why I went so hardcore on changing things I you know, as I said, I used to really enjoy my drink, I haven’t had anything to drink in almost two years now.

Bill Gasiamis 24:53
Yeah, that’s a good move for anybody, even if somebody wasn’t a big drinker. I mean alcohol and brain health and brain recovery do not go hand in hand.

Pete Rumpel 25:04
Amen, and by the way, again, kudos to you and a number of people that put that out there, and all the focus on Neuroplasticity, it’s phenomenal. And you know, you can get, you can get this thing to work for you if you do the right thing. So I’m trying.

Bill Gasiamis 25:26
Yeah, you gotta create the right environment for it. And if the brain wants to heal and you’re still smoking or you’re still drinking, or you’re eating a high carb diet that includes, you know, heaps of wheat, cereals, sugars and all that kind of stuff, you’re not creating the right environment for healing. So you’re going to take longer to heal your brain. It’s going to take longer for Neuroplasticity to happen, it’s going to take longer for you to overcome the challenges that are ahead of you. So I didn’t want to be that guy.

Bill Gasiamis 25:59
I made the same decision, you know, within maybe six weeks of being at home, that I couldn’t be the guy who gets in the way of my recovery, because I would really hate myself if I did that, and I wanted to be supporting my recovery, and that’s I made the decisions about food and all that kind of stuff very early on as well. Religiously, I avoided anything that was on the do not eat list. And it didn’t matter where I was, who I was with, it would make for some awkward conversations every once in a while, but then, you know, that was okay.

Bill Gasiamis 26:40
I took it as an opportunity to just educate people on my journey, like what I was going through, and not make it about them. It didn’t have to be their journey, it was just my journey, that’s what I have to do to be better. I’ve had a serious, serious scare. I’ve had two brain hemorrhages within six weeks, and I’m not going to I’m not looking forward to the next one, and I’m hoping it’s never going to come, but it still came, and then I had brain surgery, but see, even now, I still, people still struggle with the fact and it’s 12 years since my first bleed.

Bill Gasiamis 27:18
People still struggle with the fact that we’ll go out to dinner and I won’t have alcohol, and when they say ‘What are you drinking? It’s the same every time, it’s soda water. They just don’t, they just can’t wrap their heads around it. And I’m not saying don’t drink your beverage because of me. I don’t do any of that, so I just drink soda water. Guys, just put a wedge of lemon in it, if it makes you feel better, if it makes it look like I’m holding an alcoholic drink.

Pete Rumpel 27:53
But that’s right on Bill, I have people, most of my people are really people that I’ve been around, really supportive. They don’t say anything, and the reality Bill is, I drank them up for three lifetimes, so I really don’t need it anymore, it’s not that it was ever ugly or anything like that, but, you know, I had my fair share. I’ve checked that box.

Bill Gasiamis 28:20
You reached a quota.

Pete Rumpel 28:23
Right on, man.

Bill Gasiamis 28:26
So what’s like? What’s life like now a couple of years down the track, what are you still dealing with? What are you still trying to overcome? And how has life changed?

Pete Rumpel 28:43
Well now, you know, I’m sorry, my, I should have turned that off. Sorry about that Bill.

Bill Gasiamis 28:56
That’s all right.

Pete Rumpel 29:03
I’m living with my sister, which has been wonderful, and get ready to move out onto my own, and focusing a lot Bill on building stamina. So, as you know, and I’ve heard you talk about, you know, when I was first, when I was first recovering, Music Television, everything was like ‘Whoa. And I’m just trying to get back to game speed and I do as many errands as I can, I remember you talking about, no matter what you were doing in a day, you were making sure you were delivering dinner and go get the groceries and do.

Pete Rumpel 30:00
That stuff stuck, I started out doing one thing a day, and now I go out and I’ll do a bunch of errands, I’ve tried to work a couple times, but I haven’t been able to yet, but I’m getting close, and I one thing I’ve also found, Bill, is every time I get a chance, an opportunity to push myself, I do it that that’s not the way I used to be, and I’m so thankful, because there’s so much I end up finding out I would not have known otherwise.

Bill Gasiamis 30:52
It’s feedback.

Pete Rumpel 30:55
Right? And sometimes the feedback is alright, I’m not ready, other times like I couldn’t drive until February of this year. I tried to, but I was like ‘This is dangerous. So in February, I started driving. I was obviously, as many people know, it’s really scary when you first get back to it, and then in April, so three months later, I did a seven hour trip down to the coast and back seven hours, so 14 hours total. And then in July, I went and visited my daughter in Texas.

Pete Rumpel 31:52
That was a 17 hour each way drive, but again, if I don’t try, I don’t know, and I just now I kind of appreciate ‘Okay, let me give it a chance. And if it doesn’t work, I can always cut back, get a hotel, what have you.

Bill Gasiamis 32:22
And go again when you’ve recharged.

Pete Rumpel 32:25
Right on.

Bill Gasiamis 32:27
Yeah, that’s the thing about pushing, sometimes you pay the price because you get to the other side of pushing and you go ‘Oh my god, I went too far, I am wrecked, I cannot function properly anymore. And then you use that time to just recuperate, and then sometimes you push and it’s like ‘Oh my god, like, look how far I’ve come, I’ve gone further than I thought, I’ve managed to do more than I thought, I’m less fatigued than I expected, I’ve recovered quicker. And it is a test that you have to put yourself through every so often.

Bill Gasiamis 33:03
Now, with driving, it’s a little bit different, because I wouldn’t want people to test the distance they can go and get fatigued and find themselves in a really difficult situation driving, right? I wouldn’t want that, but anything else, almost anything else, walking, physical exercise, some kind of exertion, trying to work, anything that, that you know requires you to use head, eyes, ears, all at the same time, you know those multi faceted kind of movements or or physical things, then I think it’s worth going for it.

Bill Gasiamis 33:54
And you can do that letting people know that you’re going to go down a path of testing the boundaries and see where the boundaries are again, so that if you struggle to get there, you can have them sort of help you out of the mess that you found yourself in. And also, if you’re going to have a big recovery day the following day, they know that you’ve planned for, and it’s not going to it’s going to be less dramatic, because what you’re saying is I’m going to go do this push, and then I’ve planned for recovery.

Bill Gasiamis 34:30
I used to have a day of recovery available to me every time I went to the gym. So if I went to the gym in the morning, at the beginning, I’ll be, I would be wiped out for the rest of the day.

Pete Rumpel 34:45
Yep.

Bill Gasiamis 34:46
And I knew that, say, Saturday was my day. I knew that if I went as early as possible, that wipe out ended, say, before the evening on my I recharged my batteries before the evening. So if we had to go to dinner or something, I’d be okay to get them, there was nothing else booked for my entire day. Now, if I went midday or 1pm I would probably be wiped out for the entire day. So a little bit of planning and paying attention to my patterns and understanding how my recovery was coming along.

Bill Gasiamis 35:22
Really allowed me to go to the gym and not feel bad about that not being able to participate in the rest of the day, and then clearly the gym’s helping. So the more I went to the gym, the less my recovery took decreased, because I’m never big weights kind of guy, I don’t do weights. I just push weight, just to act, to activate muscles, and to, you know, release endorphins and to build a little bit of strength, that’s all I’m going for. I’m not doing any of the stuff I used to do as a 21 year old.

Pete Rumpel 35:59
Absolutely, and I gone through the same process. And by the way, Bill, I definitely don’t I truncated a lot of the driving story, I did a lot of work driving. My sister took me to start driving again, and God bless her, because she must have been petrified, and it was, I did a lot of test and learn to get there.

Bill Gasiamis 36:27
Yeah. So it wasn’t day 117, hours.

Pete Rumpel 36:30
No, no way.

Bill Gasiamis 36:33
Yeah, now you must enjoy driving. Were you one of those people who can drive across the country and lap it up?

Pete Rumpel 36:45
Yep, I usually drove people like, I don’t want to drive, I’ll drive.

Bill Gasiamis 36:52
Yeah, 17 hours. So what’s the is that the biggest trip you’ve made.

Pete Rumpel 37:00
Yes since the stroke, yes, yeah.

Bill Gasiamis 37:04
I mean, how many miles is that?

Pete Rumpel 37:08
It’s probably, I think, almost 1000.

Bill Gasiamis 37:17
Yeah, that’s far.

Pete Rumpel 37:19
Yep, yeah, it was far, it was a big test, and I did get a hotel on the way home. So I did all the way there. On the way there, stayed four days, and then did a hotel on the way back. My sister was like ‘You gotta get a hotel, you gotta, you’re gonna need a rest. Sure enough, I got there on fumes, I was ready.

Bill Gasiamis 37:48
Yeah, I remember driving four hours to see a friend of mine probably about three months after my brain surgery, and when I got to his house, I was completely wiped out, it was probably longer that I should it was too long that drive for me. It was too long at the time, but I got there okay and safely, but I was so wiped out when I arrived, it took a lot out of me, I didn’t realize the movement, the focusing, the concentration, all that stuff, how much of an impact that was going to play in my head, I never lost my license, even though I couldn’t walk, feel my left side, all that kind of stuff.

Bill Gasiamis 38:35
For one period of time, I never lost my license. So I was driving pretty much immediately after I got home after brain surgery, which was maybe six weeks after brain surgery, and then the trips were close, you know, they were to the store, that kind of trip. But my left side was really weird, and I have an automatic car, so it helped, if it was a stick shift, I wouldn’t have been able to change the gears or feel the clutch with my left leg, so my left hand would off, would often kind of lose grip. I was holding the stimulus quite well with my right hand.

Bill Gasiamis 39:19
My left hand was doing its job to an extent, but then it would kind of lose grip and let go, and I needed to adjust the way I was handling the steering wheel. So because I thought that I had done enough driving around my suburb and went to the shops a number of times, I thought that it was a good idea to do four hours, and it probably wasn’t at the time, because then I had to spend a couple of days at my friend’s place and then drive back for another four hours, and I was worried about those that trip back, although I was up for it, and I managed it quite well in my mind.

Bill Gasiamis 40:00
I was a little bit uneasy about the fact that I’m going to have to do such another big trip again. Basically, what I’m trying to demonstrate is everyone’s different, and the things that you have to take into consideration are different for everybody, but that was my version of of it. So people considering going back to driving like, like you did get some family members to sit next to you for a little while and freak them out.

Pete Rumpel 40:28
Yeah, I freaked out my daughters too, I would did a little part of a road trip before I was driving to get ready. But yeah, I really leaned on a lot of the people around me, and I was shuttled for a long time before being, you know, it took me 14 months before I was ready to really go after it, because I tried about eight months in, and I was like ‘No way, I’m gonna hurt me and somebody else.

Pete Rumpel’s Support System and Community

Bill Gasiamis 41:03
Yeah, what was behind the decision to move back into your sister’s place for a little bit.

Pete Rumpel 41:13
Just to have support? I wasn’t ready to do stuff on my own, I was, especially when I got heroes too weak, and my right hand wasn’t usable at all, my right leg was a mess, and I needed healing. And just as you said, Bill, yesterday, I felt really unusually tired, I took that time chilled, said no to a few things I was supposed to do, got up and went and hit his hard today.

Pete Rumpel 42:03
So, we all like start to understand the rhythm, and that’s why I don’t want to come across as, like ‘Whoo. You know, got it beat, no way, there’s a lot of learning left, and I’m just trying to, you know, push as hard as I can.

Bill Gasiamis 42:28
I love what you said there about the rhythm, that’s exactly what I experience is I understand the rhythm, I know what’s coming, and I know what I need to do to overcome it, and everyone gets schooled around me today, I’m saying no to everything ‘You guys do whatever you want. Yeah, my blessing, I’m going to do what I want.

Pete Rumpel 42:28
Love it.

Bill Gasiamis 42:28
Which is nothing, I’m going to sit down on my butt, maybe read, maybe watch TV, maybe listen to some music, and I’m going to do nothing, and I remember going over overseas early on, probably about three or four years after my surgery.

Bill Gasiamis 43:09
And I had told, you know, traveling, air, flights, all that kind of stuff, from Australia to go anywhere is such a hassle. It’s such a long trip. So I remember being out and about and feeling really exhausted, and then saying to my wife ‘You’re doing the city on your own tomorrow, you go and do your thing, and I’m just going to chill out and relax.

Bill Gasiamis 43:31
And she made plans to be out and about and discover things on her own, and that evening, I went to bed really wrecked, but I woke up feeling ready to go, and I said to her ‘Right, what are we doing? What are we gonna go see today? She said ‘I thought you were, you’re, you’re wiped out, you’re not doing anything. I said ‘Yeah, that’s changed, I feel great, we’re going.

Pete Rumpel 43:59
That’s great.

Bill Gasiamis 44:01
You know, so unexpectedly you turn these corners and you’re able to participate in things that you would have been happy to sort of check out of a little earlier.

Bill Gasiamis 44:17
So I hope we’re painting the picture for people that ebbs and flows. Things are never really that predictable, and you just gotta be flexible and adaptable and just go with the flow.

Pete Rumpel 44:33
Yeah, and that, you know, Bill and I again, that’s not easy for a number of us, right? We’re used to pushing, pushing, pushing, but I’ve learned some grace, and I’ll continue to learn and try and get stronger as I go.

Bill Gasiamis 44:55
Yeah, where are you at with work and going? Are you thinking of going back? Is that on your radar?

Pete Rumpel 45:04
Yeah, I think somewhere in the next maybe six months or so, I’ve got to see but I definitely want to go back, and I want to go back in close to the capacity I was in.

Bill Gasiamis 45:30
What does that look like? What kind of work were you doing?

Pete Rumpel 45:35
I was Chief Revenue Officer and in a couple roles, CEO.

Bill Gasiamis 45:42
Right? Big roles.

Pete Rumpel 45:47
So yes, but yeah, and they were big and a lot of responsibility. I’ll probably do a different size, different type, org, but I’m gonna go for it, and by the way, when I first go back Bill, I’m gonna do whatever I can do to add value.

Bill Gasiamis 46:09
Yes.

Pete Rumpel 46:09
And then I’ll figure out where I migrate to and what I can do, and maybe get the kind of place where I can prove myself and move up as I go. But it’s not an ego thing, I’ve gotta get out, prove myself all over again, and then build the track record, if you will.

Bill Gasiamis 46:36
Yeah, well, you could always be a CEO of a not for profit or something.

Pete Rumpel 46:46
Maybe, that, again, I have so much to learn, Bill, and I’m going to put that cap on at the right time, but right now, very focused on recovery, and you know, even having this dialog as you know it, that kind of I couldn’t have done this four months ago, would have been really hard.

Bill Gasiamis 47:13
Really, why?

Pete Rumpel 47:16
Just the stamina of a conversation and focusing and dialoguing, listening all that stuff. Well, I’ve never really been good at listening but, you know, it’s I’m just every opportunity, I’m like ‘Go for it.

Bill Gasiamis 47:40
Yeah. So you really seem to have, like, turned the corner. There’s, clear indicators to you there that you know you’ve, like, really turned the corner, although there’s obviously stuff you’re still dealing with, etc, you’ve made a big leap in the last few months, by the sound of it.

Pete Rumpel 48:00
Yes, definitely, and it’s been again, it’s that acceleration principle Bill, like I remember reading something, I can’t remember the gentleman’s name, and he described that incrementally, the better he got, the More he could take on the faster heal, and that’s right on like, I have a really good friend of mine named JP, he’s down on the coast in Charleston. I just went down and visited him. He goes to the beach every morning, works out, runs, push ups, goes in the water, I did. I walked on the sand while he ran, I got in the water, and at the end of that week, my I felt better and I was stronger.

Pete Rumpel 48:55
And that was only like a week two weeks ago, and he got me in touch with a friend of his, it’s a chiropractor and, Doctor J, and he did these miraculous things, and then my foot that I was dragging on the floor wasn’t dragging post, going and seeing him. So I think a lot of it is, I know I was looking for mere two cures at the beginning, and the reality is, it’s the right thing at the right time, and things kind of come together and just continuing to try and push the pushing is the important part. And you know, like my buddy JP calls it the JP boot camp, and I was in it.

Pete Rumpel 49:58
I was in it for four days, and when, when he went to go to a golf tournament, I was like ‘Relax. But it was all kidding aside, it was amazing. And, you know, there’s, it’s just go, go, go, and that’s what I needed, that’s what I needed at that time.

Bill Gasiamis 50:21
Nothing beats hard work and dedication to your cause, it beats a miracle cure anytime. It takes a bit longer, but it beats a miracle cure anytime.

Pete Rumpel 50:35
Yeah, and surrounded by his friends and some my friends down there, it was an amazing week. And again, Bill, it’s something it could be easy to say, well, let’s do it another time. Let me, come down when I’m better. But he had tremendous grace and let me be me, and pushed and always gave me the chance to opt out, and it was awesome. Things like that make all the difference.

Bill Gasiamis 51:13
They do see that’s that’s accessing and encouraging and supporting your emotional side. We think about hanging out with your best buddy and doing all this crazy stuff like that’s really emotionally uplifting and positive, and you can see like, how much that emotional positivity and connection with other people and all that kind of stuff, how much it helped with your physical recovery.

Pete Rumpel 51:42
Amazing,

Bill Gasiamis 51:45
And your mindset.

Pete Rumpel 51:48
Absolutely and one of your podcasts, I’m forgetting her name right now, I think it was Maddie who talked about having a recovered mindset.

Bill Gasiamis 51:58
Yeah.

Pete Rumpel 51:59
You know, think about you being healed and play that way, and I took that to heart. Man, I was doing the opposite of that before that, and I’m like ‘That’s exactly right, especially with what we’ve learned about how the brain works.

Bill Gasiamis 52:22
I’m already recovered. Sure, I’ve got wounds that I’ve gotta dress, that I’ve gotta heal, that I’ve gotta nurture, but I’m already on the path to recovery. I’m thinking about how I’m going to be more recovered down the track, and focusing on that, rather than focusing on all the problems that stroke has caused, because, man, it causes a ton of them, and for everybody could be different versions of dramatic, you know, so like, you have to think about recovery as something that you are, like you’re embodying recovery, and it doesn’t look a certain way.

Bill Gasiamis 53:04
It’s an attitude, it’s a lifestyle, a recovery lifestyle. You really have to move towards that kind of version of life, and then everything you do is about recovery, you know, not drinking at the pub with your mates on a Saturday night, for me, is about recovery. It’s still about recovery, 12 years on, I don’t want to, I don’t want to, I can’t be out and not be thinking about my recovery while I’m out and letting it slip. Do you know what I mean? I can be doing both, because I’m out, I’m not drinking, that’s part of recovery. I’m connecting with my friends, having a great emotional time.

Bill Gasiamis 53:45
That’s part of my recovery. So you can mold them all together, you can bring them all together, and you can re like, redefine what going out is about. It’s no longer, let’s go out for a drink, it’s about we go out, we connect, we have fun, we laugh, we say dumb stories, we talk about serious things, we experience a meal together, we break bread together, whatever, and then we bring it in. That’s our, that’s my therapy, that’s my recovery. You know, you could turn it into your therapy.

Pete Rumpel 54:24
Right on, right on.

Bill Gasiamis 54:30
Were you ever any good at golf?

Pete Rumpel 54:35
No, is a you know, I just really enjoyed it.

Bill Gasiamis 54:38
Yeah, talking, walking, chatting with your mates.

Pete Rumpel 54:46
Yeah, and just being outside. That was one of the things my buddy JP brought up Bill was getting in the sand with your bare feet connecting, to the earth, and sure enough, it makes a big difference, and it puts a smile on the face as well.

Bill Gasiamis 55:09
Yeah and how was it walking on sand with your balance issues and your walking.

Pete Rumpel 55:18
Good point Bill balance was really, really tough, especially the first 18 months. Now I’m getting better at it, I hit there was a beach we went to that had a dune where I had to go up the dune, down the dune. And, yeah, there were some nervous people watching, and it was great. And by the way, the having you adjust for the sand was very healthy.

Pete Rumpel 55:54
Also for my brain, like you think through it, you gotta walk through it, you’ve gotta, you know, watch your momentum and how you position your body. And by the end of the week, I was really good at it, and it was another check box, you know, another wouldn’t have known that.

Bill Gasiamis 56:16
And it’s a pretty safe place to fall, because it doesn’t ever really hurt when you fall on the sand.

Pete Rumpel 56:21
Amen, and the water’s great, except going from the beach to, like, hip deep, there’s a little challenge there, it’s a little dicey, but then once I get in and I can squat down and, you know, have the sand, I’m all set, but that was great, too.

Bill Gasiamis 56:43
I still feel weird getting out of the beach and walking, you know, the transition between the wet sand and the dry sand, that’s a real interesting kind of thing for my left leg, and the way that it kind of interacts with the pebbles and all the little sharp things that are in the in the sand, and often I’ll lose my balance in that spot, either walking in or walking out, and I’ll end up either falling on the sand or falling in the water.

Bill Gasiamis 57:19
But it’s so but it’s like the right place to fall and do it, try and adjust and do all those things. Because nothing, you know, nothing really goes wrong when you fall on sand or when you fall into one foot of water, it’s still good.

Pete Rumpel 57:39
You’re right a lot better than a lot of the other options, for sure.

Bill Gasiamis 57:44
Yeah, I found myself also in rehab, really lucky that they had a pool with us with in our facility. So when I was in there for a month, I asked ‘Can I please use the pool, because the hard floor of the other surfaces and all that was important to learn to walk on. But I was a little bit concerned with falling and then in the water, in the water was totally safe.

Emotional Growth and Listening Skills of Pete Rumpel After The Stroke

Bill Gasiamis 58:21
So I was doing running up and down the water, or pretending to run up and down the water, and it just, I don’t know, it just kind of changed the way that I viewed the physical part of it was less scary to do that in the first month after not being able to walk.

Pete Rumpel 58:41
Yeah, Bill for me, I was in I did therapy for a physical therapy almost for a year, about a year, and then I, you know, insurance, all that stuff. So I joined a gym here in the US called LA Fitness, and they had a pool. So now I do three aquatics courses a week, and it has made a tremendous difference the pool ‘Oh god, it’s amazing, the pool.

Bill Gasiamis 59:24
Yeah, good in the joints, it’s good because it allows you to float a little bit. It’s safe because you’re not really going to fall and hurt yourself, there’s so many things about it. It’s good, hydrotherapy is awesome. Something worth considering for anyone who’s listening and hasn’t done it yet, see if you can find a good place to go and do some hydrotherapy.

Pete Rumpel 59:47
It’s yeah, and by the way, Bill, there’s a great article I read. It was, I forget who was, it was about a stroke victim survivor who went. It, 23 years without the movement of the arm or the hand, happened to go swimming and got movement, and now he’s starting to unleash amazing I wish I had his name but a mate, 23 years Bill and the water got him going.

Bill Gasiamis 1:00:26
Wow, that’s so cool. Your homework is going to be to find that article and send it across so we can put it in the show notes, so people can ever.

Pete Rumpel 1:00:35
Will do.

Bill Gasiamis 1:00:36
That’s your homework. Tell me a little bit about what was the hardest thing about stroke for you.

Pete Rumpel 1:00:55
The not knowing the amount of I knew was so little Bill, I there are people, and I think, if your background might be entrepreneur, entrepreneurial, I think was.

Bill Gasiamis 1:01:20
A little, yeah, little like that? Yeah, I started my own painting company 20 years ago.

Pete Rumpel 1:01:24
Okay, there you go. People that are like that, oftentimes they impress me like crazy because they just, they go, they they’ve got an idea, they go. That’s less my MO. I’m a paint by numbers type person, and it for me, the little amount that I could read into and be predictive about where I could go was nuts. I mean, it was so like listening, learning again.

Pete Rumpel 1:02:16
This podcast, great example, I learned so much about what was possible, how I need to think, how I need to get over this, because of all the pains of the people went before me, I got to stand on their shoulders, and it’s tremendous, but that was the scariest part for me.

Bill Gasiamis 1:02:44
Being ignorant and having the the idea in your head about what stroke looks like the majority of the population before they have a stroke.

Pete Rumpel 1:02:55
Amen.

Bill Gasiamis 1:02:56
Thinks it looks like this, and it’s always really terrible, and you only ever remember the really bad ones that you came across. You don’t remember about the other stuff, so you’re ignorant, like everybody before you that came and had a stroke and the many people after you, it’s just nuts how ignorant we were. I was the same, and I’d never heard or met anybody that was that had had a stroke, and I just couldn’t bring my head around, trying to.

Bill Gasiamis 1:03:10
At 37 you mean, and then I’m interviewing people and they’re going, I was 19, and then I’m interviewing mums whose child had a stroke, and I was like ‘Oh, I didn’t realize I was that dumb. But okay, I’m ready to learn. So, you know, educate me, and that was my journey as well. It was the same for many stroke survivors I’ve interviewed, it’s that so completely oblivious to what’s going on around you in your community? One in four people will have a stroke in their lifetime, I mean, it’s not a few people that it’s happened to, it’s happened to millions of people.

Pete Rumpel 1:04:13
Yeah, and the amount of the amount of young people is really staggering as well, and you’re absolutely right. I’m definitely a kinder, gentler Pete now.

Bill Gasiamis 1:04:29
It’s amazing how we all become nicer and better than we were before. That’s wonderful.

Pete Rumpel 1:04:38
Right on, right on.

Bill Gasiamis 1:04:44
So I know stroke has taught you heaps, but I’m going to ask you that again, what has stroke taught you? There might be a deeper answer there that you come up with, I don’t know.

Pete Rumpel 1:04:59
I think that big thing, Bill is the thing that immediately pops in my head when you asked was listening and being present in the moment. And I know there are a lot of people that have written about it, and there’s a lot of great stuff out there, but the amount I used to try to multitask and be on to the next thing while I was wrapping up a conversation with someone I don’t do that now, like I want to be all in, I want to understand, I want to know the details, and then when, when I’m done, I’m done, and I want to be in the moment and fully available and on.

Bill Gasiamis 1:06:07
Do you think that version of listening was just as a result of your employment and the kind of work that you’ve done that give me the short version, not the long version? You know, the business think, is very different than one on one emotional think and listening.

Pete Rumpel 1:06:29
You are absolutely right, but I think business think also is what you make of it, and I didn’t do a good job because I’ve had people that have been tremendous role models that I really respect. They listen, they ask really intelligent questions, because they listened, and I didn’t do that, and so I wouldn’t blame it on the business, I would blame it on how I did business, and I needed to improve.

Bill Gasiamis 1:07:12
So you see it as just your perception was ill formed, and you thought that it was still able, you are still able to continue in your role, provide a good outcome. And now you see this space for more listening, even at the that level of responsibility in an organization, it sounds like it’s actually more important to listen than you ever imagined.

Pete Rumpel 1:07:45
It really is, Bill, you sit there, I will sit there, and I’d be like ‘Okay, let me prepare for the six scenarios that could happen here. But then, while I’m doing that, I’m not listening the same way I’ll think I am. I want to be, you know, ego wise? Yeah, of course I’m listening, but if I’m really listening and really grooving with what is being told to me, I’m going to have a better answer and be much more prepared.

Bill Gasiamis 1:08:26
So the ego is taken ahead as well.

Pete Rumpel 1:08:29
The ego’s gone Bill like the ego is useless, ego hurts. It doesn’t help.

Final Thoughts and Advice From Pete Rumpel

Bill Gasiamis 1:08:47
Wow. People are listening to this conversation, maybe they’re listening for the first time, this is the first episode they’ve ever tuned into, or like you, they’re a avid listener. What do you want to tell them?

Pete Rumpel 1:09:17
Feel emotional. Don’t quit, keep pushing so important.

Bill Gasiamis 1:09:37
Words to live by. On that note, thank you for being on the podcast.

Pete Rumpel 1:09:46
Thank you very much, Bill for everything you’ve done.

Bill Gasiamis 1:09:50
Well, that wraps up another inspiring episode of the recovery after stroke podcast. Pete’s story reminds us of the importance of persistence and gratitude and embracing a holistic recovery approach, his ability to adapt, push forward and remain hopeful is a testament to the strength of the human spirit. If this episode has helped or inspired you, please consider supporting the podcast at Patreon, via patreon.com/recoveryafterstroke, every contribution makes it possible to share more stories like Pete’s and provide hope to stroke survivors and their families around the world.

Bill Gasiamis 1:10:29
A big thank you to everyone who supports the show and has left a review on iTunes and Spotify or on YouTube, these reviews are so important to help the show grow. If you haven’t already, please consider leaving a five star rating. Like, comment, share and subscribe to stay updated on future episodes. If you’re a stroke survivor, or you know someone who is and they have a story to share, I’d love to hear from you or them.

Bill Gasiamis 1:11:00
My interviews are relaxed and unscripted, so just come as you are. If you have a product or service related to stroke recovery, consider sponsoring the show or an episode of the show by visiting recovery after stroke.com/contact fill out the details, and I’ll be in touch with you for how we can meet over Zoom, thank you for spending your time with me today. I look forward to seeing you in the next episode.

Intro 1:11:27
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.

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Intro 1:12:21
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Intro 1:12:48
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David’s Journey: Overcoming a Cerebellar Hemorrhage and Thriving in Recovery

Seven years ago, David Brooks’ life took an unexpected turn. A healthy and active individual, David had never faced any major health concerns until one day at work in Cambridge, UK, when he was struck by something unusual—a cerebellar hemorrhage.

It began with a loud whistling sound in his ear, followed by a strange sensation of being pushed against the wall. David experienced intense vertigo, nausea, and vomiting, classic symptoms of a cerebellar hemorrhage. Unlike the more common strokes that affect speech or movement, a cerebellar hemorrhage primarily impacts balance and coordination, making it more difficult to diagnose.

What is a Cerebellar Hemorrhage?

A cerebellar hemorrhage is a type of stroke that occurs when blood vessels in the cerebellum, the part of the brain responsible for balance and motor control, rupture, leading to bleeding in the brain. This condition can result in serious complications, such as dizziness, difficulty walking, loss of balance, and even coma if left untreated. In David’s case, the hemorrhage was initially misdiagnosed as an inner ear infection, which is not uncommon for strokes in this area of the brain.

Cerebellar hemorrhages account for only a small percentage of all strokes, but they require urgent medical attention due to the delicate nature of the cerebellum’s role in motor functions and coordination. You can also learn more about cerebellar stroke recovery and how survivors regain their life in this interview with Elizabeth Cottone.

Cerebellar Hemorrhage Recovery: David’s Story

After being misdiagnosed at first, David was eventually transferred to a dedicated stroke unit where doctors identified the cerebellar hemorrhage. His treatment involved administering blood thinners to prevent further clotting and reduce the risk of another hemorrhage.

The exact causes of cerebellar hemorrhage can vary, but in David’s case, the root cause was traced back to a supercar racing accident years prior, which had damaged the arteries in his neck. Over time, this injury caused the artery walls to weaken and eventually rupture, leading to the stroke.

Despite the severity of his condition, David’s outlook remained positive throughout his cerebellar hemorrhage recovery. He spent two weeks in the hospital, enduring physical challenges such as severe vertigo and difficulty walking. Through physical therapy and sheer determination, David gradually regained his balance and motor function, particularly in his left hand, which had been severely affected by the hemorrhage.

Cerebellar Hemorrhage Recovery Time and Long-Term Effects

Recovery time for a cerebellar hemorrhage varies from person to person, depending on the severity of the stroke. For David, the process was slow but steady. It took him nearly two weeks before he could begin walking again, and over the following months, he worked diligently with physical therapists to regain control of his motor functions.

David also faced long-term effects of his cerebellar hemorrhage, such as occasional vertigo and coordination issues, particularly with his left hand. However, his persistence in practicing activities like drumming helped him rewire his brain to compensate for these deficits.

Staying Positive During Recovery

One of the most important aspects of David’s recovery was his ability to maintain a positive attitude. Throughout his journey, David found strength in humor, using it as a coping mechanism to deal with the emotional and physical challenges of his cerebellar hemorrhage. He encourages other stroke survivors to focus on what they can do rather than what they can’t and to take recovery one step at a time.

David’s advice to others is simple yet powerful:

• Don’t freak out. If you’re still here, there’s always a way through to recovery.
• Keep a sense of humor. You can find humor in almost any situation, and it provides relief during tough times.
• Stay positive. Focus on what you can do, and tackle problems in small chunks rather than all at once.
• Find a distraction. Having a hobby or interest helps keep the mind occupied in a positive way. For David, it was working and drumming.

Cerebellar Hemorrhage Treatment and Moving Forward

While the recovery process can be long and difficult, David’s journey shows that with perseverance, humor, and a positive outlook, it is possible to reclaim your life after a cerebellar hemorrhage. His story offers hope to others who are recovering from similar conditions and looking for guidance on how to move forward.

If you or someone you know is recovering from a cerebellar hemorrhage, remember that every recovery journey is unique. It’s important to take things one step at a time, seek support, and focus on what’s possible.

You can also learn more about cerebellar stroke recovery and how survivors regain their lives in this interview with Elizabeth Cottone.

David’s Inspiring Journey of Overcoming a Cerebellar Hemorrhage

David Brooks’ journey after a cerebellar hemorrhage shows how perseverance and targeted therapy can lead to incredible recovery. Learn how he regained his strength and balance.

Support The Recovery After Stroke Podcast Through Patreon

Highlights:

00:00 Introduction – Cerebellar Hemorrhage Recovery
03:25 Hospitalization and Initial Diagnosis
13:34 Cognitive Tests and Hospital Life
20:52 Recovery and Rehabilitation
28:59 Counseling and Personal Reflections
55:00 Dave Brooks’ Coping Mechanisms and Reflections
1:19:58 Reflecting on Mortality and Career Goals
1:27:44 Lessons Learned and Supportive Community
1:31:32 Conclusion and Final Thoughts

Transcript:

Introduction – Cerebellar Hemorrhage Recovery

Bill Gasiamis 0:00
Hello everyone, and welcome to episode 329 of the Recovery After Stroke Podcast. Today, I’m excited to introduce Dave Brooks, a cerebellar stroke survivor whose unique approach to recovery emphasizes humor, positivity and problem-solving. In this episode, Dave shares his journey from the initial shock of his stroke to the resilience he cultivated while dealing with new physical and cognitive challenges. His story is a powerful reminder of the strength found in embracing humor and staying focused on solutions even when faced with adversity.

Bill Gasiamis 0:39
Before we dive into Dave’s journey, I’d like to thank everyone who supports the podcast. If these episodes have provided insight, hope or support in your own life or for someone you love, please consider supporting the show at patreon.com/recoveryafterstroke, your support keeps the podcast going, enabling me to bring you these invaluable stories of recovery and resilience. Thank you to all the listeners and everyone considering becoming a supporter.

Bill Gasiamis 1:12
Dave Brooks, welcome to the podcast.

Dave Brooks 1:15
Hi Bill, great to be here at last. It’s been fantastic.

Bill Gasiamis 1:20
It is good to have you, Dave, tell me a little bit about what happened to you.

Dave Brooks 1:26
So about seven years ago. Now, before I start, I haven’t said this is a bit cathartic for me, because I’m one of those people that looks forward. I don’t look back, I don’t reflect, you know, fix and move on. So it’s a bit, about an hour ago, I was thinking ‘You know what? I haven’t really talked to anybody about this in any sort of detail, what’s happened. So it’s a bit weird for me.

Dave Brooks 1:56
So I’ll go a bit strange, then you’ll know why ‘Okay, I’m not, I’m not emotional about these things, but it’s a so about seven years ago, I’d gone to work, and I was working in Cambridge in the UK, and I just come back off holiday, and you know how all these things are, that there’s a bizarre situation, and I’m sure you’ve heard it many times before. I’ve never been ill, I’ve never been into hospital, you know, apart from things, I’ve broken or, whatever, and I just gone into work, and I just gone to the toilet, and I was sitting on the toilet, you know. So, you know, this is the reality of it.

Dave Brooks 2:42
I was thinking ‘You know what, that fan up there sounds really loud. And it was getting loud, I think, what the hell’s going on? And then I was just sort of like, there was this invisible force trying to push me into, like, push me into the wall, I don’t know what’s going on. The bizarreness of being caught on the toilet and having thinking I have got to get out of here and back to my desk, and there’s like an absolute drive, and I managed to walk back out the office, and it’s like a really weird force, like somebody was pushing me, trying to push me against the wall.

Hospitalization and Initial Diagnosis

Dave Brooks 3:25
I got to my back to my desk, and died, I’ve known for a long time sitting, you know, he’s working next to me ‘Daddy, are you all right? ‘No, I feel pretty odd. And this guy, his dad, had had TIA about a year, he said ‘I think there’s something going on, I said ‘No, I don’t think so. Because, you know, he talked me about the symptoms, and I said, I don’t think that’s it, and then it was just this incredible vertigo, and I couldn’t get low enough to the ground. Very weird feeling, I was sitting on my desk, and that was too high so, and then I started being very, very nauseous.

Dave Brooks 4:08
So I thought, I’ve gotta go outside, sit outside, and just as soon as I got outside, just couldn’t stop throwing up, just because of the the it wasn’t it’s not a dizziness. It’s a very strange thing, and they didn’t really know what to do, and where I was working in Cambridge was about, probably 10 minutes from Anne Brooks Hospital, which is came it’s a University Hospital, so, you know, it’s well respected.

Dave Brooks 4:41
And I said ‘Look, just call Barbara, my wife, get to come and pick me up and take me home. Because, I thought was something a bit odd going on, and really loud whistling in my ear, you know, and so Barbara came in and she said ‘Just call an ambulance. Why didn’t you call an ambulance? I said ‘No, I just want to go home. I just want to go home.

Bill Gasiamis 5:07
Logic, the logic of women it went ‘Girl, just call an ambulance.

Dave Brooks 5:11
If I go home, I’ll be fine. And the ambulance was there probably within five minutes, the things are different now, and so that I was 61 then, and, you know, I’d never been in, never been into hospital or anything like that, like I should imagine. I have watched a few of the videos on your site. And, you know, I’m hearing you, I hear a similar sort of story. So they got me into hospital again, I just couldn’t stop throwing up. So they gave me an anti genetic injection, sorted that out.

Dave Brooks 5:50
But then, I was on the hospital, the bed, sort of stretcher thing, up on wheels. I said ‘I can’t, I can’t stay here. I’ve got to get on the floor, because everything felt like it was, like, really high up. So the doc, you know, the doctor that was there, said ‘Yeah, that’s fine. You do whatever you want to feel better till we find out what’s going on. They just assumed that it was like some inner ear infection, and I’ve subsequently found out that’s a very common misdiagnosis, which makes a cerebellar stroke incredibly dangerous.

Dave Brooks 6:31
It’s only afterwards you realize that, because it’s not the normal symptoms you get for a stroke, plus, what’s going on. With a stroke, most people, it’s a blank, it’s gone. Even TIAs, it’s gone. But with a similar cerebellar stroke, because of the way, if some reason, you just you’re fully aware what’s going on.

Bill Gasiamis 6:56
Yeah, the brain that’s impact is not not influencing your awareness, it’s not influencing your vision, your speech, the way that your face looks. It doesn’t do any of that because I my stroke, the hemorrhage was near the cerebellum and the second blade that I had were exactly those symptoms. The first bleed I had was the same symptoms, but on a lower scale, I go into hospital, they look at me and they think, this guy’s perfectly well, they have a scan, a scan shows something completely different, and I’m and I’m observing myself and thinking, I’m perfectly fine.

Bill Gasiamis 7:34
Also, I’m walking around the ward, you know, I’m talking to people. I’m meeting people at the cafe. The doctors are going ‘Where are you? What are you doing? And it’s all simply because of the location. And I was as as coherent as I am now the second time, I wasn’t because the bleed was a lot larger, it factored more of the areas of the brain. But vertigo, nausea, vomiting was all all my symptoms, and I describe it as my stroke, not being fast.

Dave Brooks 8:04
Exactly, exactly, and these are only things that you realize afterwards, I don’t, I’m not one for sort of, like, digging into too much research and all this sort of thing. But I did a little bit of, you know, searching around, you know, probably a month or so afterwards, and so they couldn’t fight, they didn’t know what to do with me, really. So I was just, I had to lie on the floor, and I think one of the senior nurses all came in, she said ‘You can’t, you can’t lie on the floor, we can’t have, if any press come in and see you lying on the floor.

Dave Brooks 8:41
This is going to be this, those photographs will go viral. They’ll be all in the newspapers, eventually, they put me just into a regular Ward, and guy came around to see me time, the time sort of moves about, although I remember exactly what happened. It’s sort of like stretch, you know, stretches and compresses. So I think over a period of probably an hour or so, because they didn’t know what to do with me, I guess it sounds like it’s similar with you, until something concrete happens. It’s like you got a problem with a computer or something.

Dave Brooks 9:19
If it’s intermittent, it’s difficult to fix until it goes completely wrong. So they are sitting in a ward, and a guy came round, and he brought a bunch of student doctors around as well, and they said ‘this is David Brooks, he’s 61, I was thinking. Who are they talking about? Who’s this old bloke they’re talking about? Because, we all have a different perception of how old we are. We don’t think I’m not a 61 year old bloke, and I was just thinking, I want to be home.

Dave Brooks 10:02
This was like the middle of the afternoon, I thought they’ll sort something out, and I’ll go home, that’ll be fine. Just wanted to go home, because that’s normality, and then they said ‘No, we’re going to keep you in overnight. And I was thinking ‘Oh, well, I don’t really fancy that. You know, this smacks of being properly ill, and there’s loads of other ill people around you, and I think that ‘Oh no.

Bill Gasiamis 10:27
We’ll take a quick break here and be right back with more of Dave’s story in a moment. While you’re here, I’d like to mention my book ‘The unexpected way that a stroke became the best thing that happened. It’s more than just a personal story. It’s a guide for post traumatic growth after stroke, filled with stories from other stroke survivors like Dave, who found ways to rebuild and thrive after their trauma. You can find it on Amazon or at recoverafterstroke.com/book

Dave Brooks 10:58
So Barbara, sort of like she stayed with me for a while, and then she went back and they again, just assumed it was some sort of weird inner ear infection that was, they kept giving me injections to stop me throwing up, couldn’t walk. I had a couple of interviews with some senior consultants, and they liked my description of how it was. So it was like trying to walk in a very long rowing boat in a rough sea. So you’re trying, it’s not like you’re drunk and you’re just going all over.

Dave Brooks 11:42
It’s sort of like sort of like you’re walking forwards and it’s sort of, it’s going like ‘Whoa, what’s going on? And the next day, guy came around. He said ‘Yeah, we think you’ve had a stroke, but it’s not a normal stroke. He said, to be honest, one of my students suggested it. And I thought, that’s a that’s a good move, you know, I applaud that. One of the students said ‘Do you think it might be a Cerebella stroke? And so he looked into it said ‘Yes. Whip straight after the they’ve got a dedicated stroke unit at Anne Brooks hospital.

Dave Brooks 12:16
Took me in there, and, you know, he knew what was happening. So, it gave me some whole load of blood thinners and some basically, I can’t what it is, it’s like a really strong aspirin, and there’s not much more they can do, and they had no idea what had caused it. I’m not a drinker, don’t really drink, maybe I love it like a beer once a month at the most, I’ve never smoked, I’m not particularly overweight.,I eat reasonably well, and so, they’ve gone through all these questions of various things.

Dave Brooks 12:55
So then that evening I, my wife was came in to visit, and then just I was on the bed, and I just suddenly was just like, just seeing, it’s like, fairy lights absolutely everywhere, and I was obviously doing something which was, freaked her out, but she’s trying to find somebody, and this guy said ‘Oh, I’m not, I’m don’t specialize in this. But look, you know, you’re a doctor, what they didn’t say, which I think was not wrong, but they didn’t say that there’s not much we can do.

Cerebellar Hemorrhage Recovery –
Cognitive Tests and Hospital Life

Dave Brooks 13:34
We’ve given all the medication, which is blood thinners, and these sort of, like, super aspirins to sort of just make the blood thin so that you’re not going to get a problem, and they didn’t know whether it was a bleed or anything, but they knew it was a cerebellar stroke. So the next day, I was fine, but walking just horrendous, and then I had the head of the stroke unit came in, and he gave me a chat, and then they started doing all the weird tests, cognitive tests, which they don’t, you don’t realize at first you’re being tested.

Dave Brooks 14:16
They’re asking you things like, so to ‘Where do you look? Okay, okay, ‘So what day of the week is it? And then they start doing the because the cerebellum, as you will very well know, is about fine motor control. So if you can’t reach in and touch your nose or something, and it was all my left side, all my left side was just like, all over the place, and I ended up being in hospital for two weeks, but what is really weird, having never been in hospital, first night, I was thinking, I’ll be going home tomorrow.

Dave Brooks 14:55
The next the second thing ‘Oh, no you’re not, you know, you’re not going home tomorrow. So it, another day I think ‘Oh no. By the third day is looking apple pie and custard today, and you think, I’ve been institutionalized in three days flat, and I don’t, I don’t feel I’m that sort of person. It’s very, very weird, and I think I went through CT scans. They didn’t do an MRI scan, they did the CT scan with the really weird injection where you feel like you’ve wet yourself, which I’m not quite sure.

Dave Brooks 15:35
They inject something automatically that’s connected up to it, and that, in itself, becomes a sort of like something that you talk about, you’re in a queue, you know, waiting for something, and somebody said ‘Oh yeah, come in for I’ve had some stents that have gone wrong, and there’s only a young girl that’s sort of saying she was, she was going in for another scan, and I said ‘Have you had a weird injection yet? Yeah, I’ve had the weird injection, it’s really weird.

Bill Gasiamis 16:02
The contrast going into the veins.

Dave Brooks 16:04
Yeah, and it probably took about, I think, something like three or four days before they sai ‘Right, we don’t know what’s there’s there isn’t a bleed. So, you know, with the scans that they’ve done and the cerebellum is difficult to discover things with a CT scan, because there’s loads of bones around here that just block how you look in they eventually did an ultrasound all up my neck, and the guy who was doing it, he said ‘You I could see there was something a bit odd. I said ‘Just tell me, tell me. There’s two. I think there’s two or three, sort of like big arteries run up the back here.

Dave Brooks 16:51
He said ‘Have you had a head injury? No. ‘Well, one of them’s like completely crushed, and the other ones, what badly damaged? What the hell, and it was only when I went, got back to the ward that I realized I used to race super carts, which I did for about okay, it’s a big thing in Australia.

Bill Gasiamis 17:18
It’s huge. Like, it’s a massive support.

Dave Brooks 17:20
It’s fast, and I had an accident at about 100 odd miles an hour, and I flipped forwards, smacked my head, landed on the wheels, broke my shoulder, did my thumb, you know, but adrenaline just right. I’m going out to get to get this fixed, and I mentioned this to the main consultant, he said ‘That will be it. It’s just the way he explained it was, is very simplistic terms that when I was younger. So that was probably 15 years prior to that, 12 years maybe. But the when you damage something like that, when you’re younger, you’re a little bit fitter, that doesn’t really affect anything.

Dave Brooks 18:12
But as you get older, things slow downm your body’s gradually wearing out. That damage like that can suddenly have an effect, and the with it wasn’t even there was no stress or anything at work. I was just sitting on the toilet, and some all went mad.

Bill Gasiamis 18:29
Maybe it was a big toilet session, mate.

Dave Brooks 18:32
Well, I know it sounds a bit crass, but it’s sort of, I find it quite funny. I think so. Reason that I sort of got in touch with you was because, oddly, I was talking to a friend of mine who also had a stroke, but he had a proper bleed, a really bad so I’m also a drummer, I’ve been playing drums for the Donkeys Years, and he’s a friend who’s a guitarist that I’ve played with before, and he had a properly bad stroke, to the point where he’s now still.

Dave Brooks 19:06
If he touches guitar strings with his fingers, he says ‘It’s like razor blades. It’s horrible. So he and I was chatting, I said ‘I was just told in the toilet story. And he said, so he’s obviously looked at your channel at some point, he said ‘You talk to Bill. He says ‘They find it hilarious.

Bill Gasiamis 19:25
That’s right up my alley, mate. That’s awesome and embarrassing, and potentially, you know, it could have been a lot worse. It could be more disgusting than what it ended up being. So it all worked out well.

Dave Brooks 19:40
it’s amazing how your body, given that it’s like something serious is happening, and the fear of embarrassment, of being somebody having to thinking somebody’s going to have to break in here, they’re going to pull me off the toilet in you know, my pants and trousers are down that up, that is not happening. So clearly, there’s some adrenaline and that, you know, the drive, but it’s, I found it’s having done a lot of research on afterwards, I’ve realized that Cerebellar stroke.

Dave Brooks 20:15
It’s a relatively there’s a small percentage of cerebellar strokes, and back then, they were less well understood, and they’re still not that well understood. I’ve watched a couple of channels as an American woman. I can’t remember her name, she’s done some very good descriptions of her cerebellar stroke and how you know it is about the fine you know part of your brain is bringing your arm in like this. The reason for the cerebellum is that it’s actually doing that fine little bit of motor control for you know, when you’re doing various things.

Cerebellar Hemorrhage Recovery
and Rehabilitation

Bill Gasiamis 20:52
Coordination and etc, I remember when you’re telling me about your embarrassment toilet episode, and you don’t want to get you don’t want to be in there when everyone’s coming to rescue you. I’m one one day out of brain surgery, and my left side doesn’t work, I can’t walk at all, and I can’t use my left arm, and I’m in the ward and I need to go to the toilet, and that’s really important, of course, after surgery that people go to the toilet. So the nurses, the doctors, everyone encourages it.

Bill Gasiamis 21:25
They’re always asking, you going to the toilet? And I wasn’t going. I wasn’t going because sometimes motility slows down after a surgery, and they were giving me laxatives. And they were giving me laxatives day one, and then there was nothing happening, and then they were giving me laxatives day two, and then there was nothing happening, and then the laxatives started to kick in. I had the urge, so I pressed the buzzer to get the nurse there, and she was nowhere to be seen.

Bill Gasiamis 21:52
My nurse was busy, right? She would have had a heaps on her plate, and there was no one turning up. And I’m thinking, I’ve got to go to the toilet that I can’t this can’t happen here in the bed, I’ve got to go to the I haven’t been for how many days this could be ugly, you know. And there’s a and there’s a wheelchair next to me, because the family’s been in, they’ve taken me for a drive on the wheelchair, and we’ve gone down to the cafe or whatever over the last few days, and I find myself thinking ‘I’ve got to do this, I’ve got to get in the wheelchair somehow.

Bill Gasiamis 22:26
And it was what you described, like I found some kind of superhuman strength right to use half my body to get into the wheelchair. I’ve got into the wheelchair, and I’ve just wheeled myself into the sliding door. So the sliding door, had I pushed it over? Just wheeled myself past the sliding door. And as I did, the nurse walked in and said ‘What are you doing? I said ‘I’m sorry you didn’t turn up, I had to go to the toilet. It’s happening, and I’ve got to go now. And she’s going ‘Alright, let me help you up.

Bill Gasiamis 22:54
And she helps me up, and then she hasn’t left the room. I said to him ‘Oh, yeah, what are you doing? And she said ‘Oh, I’ve got to stay in, I’ve got to stay with you in case you fall down. I said ‘No, you can’t stay with me, you don’t understand, like I can’t be, I can’t have you in here while I’m going to do what I’m going to do, you have to leave because I cannot leave.

Bill Gasiamis 22:55
She said ‘I’m not allowed to leave. I said ‘You must leave. I had a conversation with her, almost an argument for about what was it seemed like forever, but it was about 30 to 40 seconds. You must leave ‘No, I can’t leave. You must leave. And I said to her ‘Alright, I promise I will not move, I will not do anything other than what I have to do, if just close the door and stand on the other side of the door, please? And she did, and then it was on for young and old.

Dave Brooks 23:52
Yeah, I think it is, I found that straight I think it’s something that happens, probably happens to everybody when you haven’t been in hospital before, and normally, stuff that you do in private, you do in private, and, stuff like that. But I think if you’ve been in hospital for a while, I think some of those inhibitions will go because it’s something that has more often, but I found the difficult one was just walking to the toilet. That was a mission, and they said ‘If you, if you’re going to the toilet, you know, you had to call somebody.

Dave Brooks 24:26
Now, sometimes somebody, people weren’t there, and they said ‘You can’t go by yourself. And I was thinking ‘I’m bloody, and it must have looked so strange. And they then, when I started to get a bit better, probably after the first week, I was sort of okay to get about, and basically, one of the one of the docs, I can’t remember who they, they said ‘If you can walk out of here, go down the corridor, go down the stairs, along the corridor, downstairs, hours and come back up, back to your bed, you can go home.

Dave Brooks 25:03
I was thinking ‘Shouldn’t have told me that, because that was an absolute challenge. And I was getting it was difficult, you know, it, took say, about another week. But I found the difficulty with the whole toilet thing is, I was that first week I was sleeping a lot. I think all this stuff just drains you, not physically, but that drain you get when you’ve done an exam or something, you come out and you, your brain is just sort of like fried, and then when I started, I was coming out of that, and I just, how do I relieve this boredom?

Dave Brooks 25:49
So bored you can’t watch daytime TV, you watch it the first day. Think I can’t do that. I’m looking outside, all these people walking around outside, and down in the light, I think I just want to be out there taking my dog for a walk, you know, that’s what I want, and then you’re thinking ‘Oh, I’ll go to the toilet and clean my teeth, you know, just leave the board and or I’ll just go to the toilet or something like that. And then, like, the end of the day, this nurse came out said ‘We’ve noticed you’re going to the toilet quite a lot. We just want to check.

Dave Brooks 26:21
I think it’s nothing to do with you. I said ‘We need to know why you’re going to the toilet because, as I said, Look ‘I am so bored I will do anything to relieve the border if that means going to the bathroom four times a day to clean my teeth, because I can’t go very far, that’s what I’m going to do. And they put also, they they said ‘You know, if you need to go to the toilet and eat, you know, at night, when the lights are out, you need to call somebody. That was my training time, because there’s only the night staff on so I could actually sort of move about.

Dave Brooks 27:00
They give me some physio things to do, and then that was my goal to sort of like just, I didn’t go down the stairs at night, but I was walking up and down the corridor and making my way back. But the hospital is a very strange place when you’ve not been there before. You know you it was a guy who was at the end, he was quiet during the day, never said anything and suddenly that he, I think he may have come in off the street, because, you know, they tidied him all up, and he was just quiet during the day. And then the lights would go out at 9 or 10 o’clock, and he just starts shouting.

Dave Brooks 27:38
And I think ‘Oh, no, I don’t want to be here, I don’t want to be here. And the guy who was between me and this other like he said ‘He tried to get into bed with me last night. He said ‘When are you going out? I want your bed. There’s some I think humor is a massive thing, you know, you’ve got to see. I think there’s two things. One is, don’t fight stuff. This was talking to a friend about the other day, you know, there may be a load of stuff you can’t do.

Dave Brooks 28:10
I was thinking ‘Will I be able to play the drums again? And I was thinking ‘Well, okay, I can’t really do anything in the left hand, but I’ve always played you can play drums just one handed.

Bill Gasiamis 28:21
You know drummer from Def Leppard that did it.

Dave Brooks 28:25
Exactly, so there is a way around thinking that’ll be okay ‘I can do that, do that. And it’s sort of, I think that, and seeing the humor in situations stops you going nuts. I think it was one of the things I mentioned to you in the early thing, I think pulling your way through something, I’ve never been properly ill before, in the grand scale of things, probably that wasn’t what I went through, could have been quite bad, but it wasn’t. It has not like have a massive heart attack or something, but it’s, it’s up here.

Counseling and Personal Reflections

Dave Brooks 28:59
In fact, that’s one of the, one of the physios. Because after I came out hospital, very good, they organized physios. I had whole lot of cognitive tests that I had to do. I couldn’t drive for two months, and one of the also, they brought somebody around. There’s two women came around, one was to talk to my wife separately in the kitchen, which I think was almost like a, it’s almost like a counseling thing. And one was came to talk to me privately at the Conservatory, and they were asking all these questions, like, you know ‘Do you feel like not carrying on?

Dave Brooks 29:39
Well, look, to be honest, wait for you to go, because I’ve got a load of stuff to do, you know. I want to get on with something, because I have to do, I have to be doing something, making something or you know. So I think having that attitude of. I’m going to find a way around this, what can I do, rather than what can’t I do, and all the funny stories about, you know, what’s going on, or just seeing, having, seeing the funny side of it, and like when I was talking to a friend, he was saying, it’s, he found he struggled.

Dave Brooks 30:24
I don’t talk to people about this like I said, I’m a bit, I look forwards not backwards, but I think I tend to deal with things in a way that suits me. I’ve got problems of I’ll go out for a walk with a dog or something, and I don’t internalize it. I think that’s a common thing that people level, particularly at men, I do internalize it. What I’m doing is fathoming out, if I do this, I can do that. If I do this, I can do that, and just logically working through stuff, but not thinking about the whole thing.

Dave Brooks 30:59
It’s like, how do you solve a big problem, how do you how do you eat an elephant, small bites? And I think, there’s times when I felt, you know, thinking ‘Oh, is this going to come back? What’s going to happen? And I’ve got a friend who’s a GP, and he said ‘I said, Well, you know, what can I do? He said ‘Well, to be honest, Dave, you’re not really in the risk group. You know, something else has caused this, and you know, that’s when, that was just before, when I spoke to the consultant.

Dave Brooks 31:33
But the really weird thing is, these cognitive tests they do, and they do it with all the patients in the stroke Ward, which is they’re asking them, and you’ll get some old bloke opposite me, really nice old bloke, probably not much older than me. But he was saying, I’ll say ‘How are you? Finally chat away. And the nurse will come and said ‘Oh, how are you today? ‘Fine. And they say ‘You know what day is it? And he just come out with some random thing. I said ‘Do you know where you are?

Dave Brooks 32:09
And then he showed, she showed him, you know, her little sort of lapel watch on a uniform. He said ‘This is a clue, do you know what’s this? He said ‘It’s the 1927 congressional model, medal first. I think he’s ill, but on the face of it, he’s just sort of like a fairly normal old bloke. So it was interesting being in the stroke unit, because they’re they’re testing you, and I know.

Bill Gasiamis 32:41
You don’t identify as having had a stroke. Still, even though they’ve told you what’s happened, etc, you’re looking around and you’re seeing these different versions of it, and you’re going, I just need to get out of here. I need to go home.

Dave Brooks 32:54
Exactly I did get a lot of so a lot of the time that I’ll get, they’ll ask me, Do you mind if a student comes in and talks to you? And I think possibly was, because, besides a Cerebella stroke, and I sort of know what’s going on, and I can reflect and remember what’s happened, they were asking me questions, which was probably not the response they were getting for some of the other patients in there. So the actual thinking response, yeah, because they don’t remember.

Dave Brooks 33:25
And even very early on, one of the consultants said he came in, he said ‘I’m going to give you three words, and I’m going to come back in an hour, and I expect him. So it’s lemon key ball, and I will never forget them, you know. And whenever he walked past in the ward, I go, never key ball, sort of like they’re not having me like that, but it was you probably been, it sounds like you’ve been through quite a bit more because you’ve had, sort of multiple things. But I sort of saying to a friend, it’s you’ve got to have because I’ve never been ill before.

Dave Brooks 34:11
I always occasionally wondered how I would behave if I was seriously ill, and I’m happy that I behaved the right way. Thinking positive, which is difficult, but thinking ‘Well, I can do this. So before you know, what can I do rather than what can’t I do?

Bill Gasiamis 34:32
One of my problems is like, what are the solutions, rather than what am what are the problems? It’s very the mindset that you have as a default is a really great thing, which a lot of strokes have always struggled with their mindset, because they might be experiencing a version of the stroke that’s far more serious, they may have far more challenges to overcome, and it’s a lot of overwhelm. It’s like, where do I start? And they also have a different way of looking at life and experience.

Bill Gasiamis 35:00
Illness and dealing with trauma and all that kind of stuff. And it’s a very different it’s a very different experience, but one of the people that are on my podcast, who actually come onto the podcast seem to have like that, a solutions focused approach, and they’re cognitively trying to get their head around that they are wrestling with thoughts, ideas. They’re putting it out there, they’re speaking, they’re sharing with other people, they have a lot of things in common. The people that come on the podcast, the people that sit back and listen to the podcast, who are curious.

Bill Gasiamis 35:36
Maybe I’ll be on the podcast one day, or maybe when I’m ready, I’ll reach out. There’s signs that you’re starting to accept this thing and deal with it and find ways around it, adapt, look at ways to still have an awesome life, even though you’re dealing with a lot of drama and problems. So I see a lot of patterns in in in the way that people get to where you’re at some take longer, but you just seem to get there quicker. Is that a reflection of your personality just before stroke anyway? Is that how you tackled life’s challenges?

Bill Gasiamis 36:15
Because I imagine, as a bloke who’s got a partner, you know, stuff’s gone wrong with partners with it may have been family members, work situations. You know, you still, even though you’re mild mannered, right, and you’re just coming across as cool, calm and collected, you still been in life. You’ve had life happen to you. So, it’s how you responded, extension of how you responded to other serious situations in life.

Dave Brooks 36:38
Yes, well, yes. So Barbara, my wife, was excellent, and I didn’t realize a lot of stuff that was going on in the background. She was freaked, and I’m sure you hear that, you know, a lot of the time, she was also hyper vigilant, which was driving me nuts. I said, I want to go and walk the dog. ‘No, no, no, no, I’ll come in with you. ‘No, no, I’ll be fine. Just go over the road. ‘No, no, no, I’ll be so I am not particularly emotional. I mean, I joke that my emotions were surgically removed at birth. It’s not quite true, but I don’t let things get to me too much.

Dave Brooks 37:30
You know, I will blow, there’s an inner monkey that sometimes you can’t keep it down, but most things are just let go by, you know, so, so I think what you were saying is that type of behavior probably leads to not being freaked out. You know, you’re not really changing, there are say that were times when you’re thinking ‘Will I be able to drive again? I can’t, I can’t manage if I can’t drive. You know, I’ve been driving since I was 16 on, you know, mopeds and motorbikes.

Dave Brooks 38:05
So that would be horrendous, but those things I wasn’t until I got much later on, I was thinking ‘Okay, I’m not allowed, because they just don’t let you drive for two months. So I was thinking ‘Oh, that would all right, be okay. And then you start to worry about it. But then you think, well, what could I do instead? So it’s finding alternatives all the time. It’s problems, it’s actually problem solving, which is, you know, I’m a software developer, mainly, and that’s, that’s my job. So it’s sort of, I guess that’s my way of looking at it, don’t let things get to me too much.

Bill Gasiamis 38:44
How long have you been? Sorry, go say that. Finish what you’re saying here, sorry.

Dave Brooks 38:49
I think one of the things I found interesting was when one of the I can’t believe it was a physio, or whether it was one of the women who came around who was doing some sort of cognitive tests or counseling or something. She said ‘You don’t seem to be freaked by this at all. I said ‘Well, I don’t feel freaked so, you know, occasionally, sort of think, you know. And she said ‘That’s what gets most people.

Dave Brooks 39:16
There’s all the physical stuff. It’s true of any sort of more serious illness. It’s up here. If you can crack it up here, that’s a big part of the problem, yeah? So sorry you could not you’re gonna say.

Bill Gasiamis 39:31
It’s okay, yeah, that not getting freaked like, if you can stay cool, calm and collected, if you can just stay calm about the situation, you’re also helping the situation actually. You’re actually making a massive positive you’re creating a massive positive influence on how the situation plays out, even though you’re kind of out of control when something’s happening in your head, but by being calm, you’re not bringing that terror.

Bill Gasiamis 40:02
And you’re not bringing that version of sort of like that unsettledness, into a situation that’s already to potentially, kind of on the brink of being difficult and unsettled.

Dave Brooks 40:17
I was thinking about this today. I was thinking it’s not it’s not about suppressing all these feelings, thinking ‘Well, I’ve got all these things, what’s the solution to that? What’s the solution to that? What’s so that? I think it’s what it sounds like you’re saying. You see, fairly often as people are rationalizing the situation and happy to talk about it, and I think you gotta ask, how long did it take me to get back?

Bill Gasiamis 40:45
I was gonna before we get to that. It’s, it’s about, I think some, I think it’s good if you can be aware of all of the challenges, park them for now, deal with the ones that are most pertinent right now.

Dave Brooks 40:58
Absolutely, yeah.

Bill Gasiamis 40:59
And then, and then when it comes time to break out, get emotional, cry, angry, all of that. Allow that to happen as well. And it’s observe yourself going through that allow it to happen, don’t suppress it. Ride the wave, you know, whatever that looks like, but it’s definitely about picking the right moments for the appropriate response for the situation if you can.

Bill Gasiamis 40:59
And that helps tremendously, getting you through hospital, getting you through a bad day, getting you through a difficult news, it all helps. Waking up with a deficit you don’t know if you’re going to have to live with for the rest of your life. Do you know there’s a right time to deal with all of it, and maybe a right location too? So I like that. What that approach that you’ve got? But does that also mean that people find you kind of difficult to read? Are people always wondering about you thinking this guy should be freaking out more because I would be.

Dave Brooks 42:02
I mean, I find I said to Barbara, don’t tell too many people, not because I didn’t want them to know. But I can’t stand that people coming up saying ‘Oh, how are you? I think I don’t know. I’m scared with things online, you know, it’s sort of and also situation people don’t quite know what to say to you. I will chat to people about this, but I’m not going to broadcast it, you know, unless it’s, you know, because, well, but what? You’ve done, is it, yeah, is sort of quite interesting. One of the things that I found did affect me was, although a cerebellum stroke doesn’t affect your speech necessarily.

Dave Brooks 42:54
I was finding that sometimes when I was talking, I would get like, almost like a my brain wasn’t connected to part of my mouth. So it wasn’t I was standing stupid. I was thinking, you know, that sounds a bit fluffed, and because one of my other things I do is I’ve built drones for about 15 years, I fly drones, I’ve operated with commercially, I still do. I built, I also fly First Person View drones, you know, with the goggles, where you fly through all that stuff. And somebody thought that might have been the cause of it, you head up like this, I said ‘No, that’s just.

Bill Gasiamis 43:41
Well, there is one of those conditions, lumberjack disease, they call it in America.

Dave Brooks 43:46
Okay.

Bill Gasiamis 43:47
Where in that forestry industry back in the old days when they were chopping trees down with the ax and then looking up to see where the tree falls? Interesting, that used to damage the carotid arteries or the vertebral arteries, whichever ones are at the back, always forget, and it used to cause dissections in the arteries, and as a result of that, that would cause a clot and that would cause a stroke, it was very common.

Dave Brooks 44:18
Interesting. So what I did was, I did have a little YouTube channel just about with it. So there’s sort of two types of drones, as the camera drone, you know, the drones that sort of cinematic DGI type drones. And then there’s the FPV stuff, which is, if you take your hands off the sticks, they just fall over, you know, you have to fly them, and it’s all done with the goals. So I’d sort of, I had a bit of a, you know, so it’s a niche with it. Drone stuff is sort of a niche, but this is, like a niche within that niche.

Dave Brooks 44:48
And I’ve done a few YouTube videos, and I thought, You know what, I’m going to try and do something which forces me almost like an exercise, almost like physio. So I started doing things to camera, learning how to read from a teleprompter, which is actually really hard, you know I well, I used to work for a period. I worked for BBC News. I worked with a lot of news readers. When they do it, you realize they are very good at what they do, it’s because they don’t look like they’re staring at the camera like this, and it’s taken a while.

Dave Brooks 45:29
I mean, that’s I’ve carried on doing that because I think it’s almost, it’s like an exercise, really. But I don’t know about you, but all a lot of the tests that I was doing that was given in hospital, like reaching out and trying to touch things I still do in the shower. Every morning I stand there, I’ve got these tiny little tiles all over the bathroom. They are going to touch that cross between those, from here to there, just to make sure that with both hands, that it’s going where I want it to go.

Bill Gasiamis 46:00
That’s a great thing, that’s a great thing to monitor as well.

Dave Brooks 46:05
It’s a measure, it’s a quantitative measure of what’s going on. Because, you can, you can lose things without realizing, sometimes I think you’ve got to be able to do something. But it took me, I went after, after I came out of the hospital, I was doing the physio. I then volunteered to do a subsequent cognitive test at another hospital, which is a little bit closer, because it, you know, I was thinking, you know, gotta do this, and it was all about things like get you to stand on one leg with your arms out, and your eyes shut.

Dave Brooks 46:41
And all the things that are actually quite difficult anyway, and starting at 100 count backwards, taking seven off each time, and all these things. And they give you, at the beginning, they give you a reasonably complicated address, and then after the hour, they say ‘What was that address we gave you? I’ll say ‘Oh, blimey, you know. And I think people would, don’t, would struggle with that anyway. But a lot of what they’re doing is sort of, they’re testing simple things, like, what day of the week is, and all that sort of thing.

Dave Brooks 47:13
But I found that I don’t want to shy away from that stuff, because it is a maybe it’s because my background sort of engineering, it’s sort of, I want to be able to know quantitatively how well I’m doing, but what I was doing, I was really overcompensated to try and make out I was fine. So when they were asking me to do certain tests, I was doing it so fast, you know, just to show, yeah, it’s not problem, anything, draw around this and do this, I think. And I was just, it was too much, I was just not showing off.

Dave Brooks 47:53
But I was overcompensating to make out that actually I was fine, but I wasn’t really things like I’ve always I’ve always run up and down stairs. For some reason, even now, I will run up and down stairs, and it’s probably only in the last two years that I can confidently run downstairs again without holding on to anything. So it’s actually taken quite a long time, and I think probably I’m back to about high 90s in terms of the fixed but there’s just little things that goes but I used, practicing drums and drum rudiments to get my left hand going, because I think can I play drums again?

Dave Brooks 48:38
Which was actually a really good thing to complement the physio exercises that I’ve been given. And now I sort of got bored of playing drums after all those years. Well, it’s mainly all the travel, to be honest, and dealing with awkward people, the actual gigs are fine, but I start to think, should I start playing drums again? But I realized that actually, I’ll be fine to play in a band again, but my left hand doesn’t quite have the definition that it used to.

Bill Gasiamis 49:14
Muscularly.

Dave Brooks 49:16
And it’s like very fine control it. I just can’t do it, and I’ve practiced and practiced and practiced. So if I go into something, so I do something, it will take a couple of goes. It’s almost like it has to rev up. What that one of the consultants told me, thing about the brain is it doesn’t fix itself. If you’ve got a damaged part of your brain anywhere, it doesn’t fix itself.

Dave Brooks 49:44
But what the spare capacity that actually you have to, sort of like, you don’t know you’re doing it, but if you’re practicing doing something the same thing over and over again, your brain is learning new ways or different sort of halves, whatever it is to just sort of relearn how to do that.

Bill Gasiamis 50:08
Plasticity side of it, it’s just literally about applying that particular task to another part of the brand that isn’t damaged, that’s just picking up the slack.

Dave Brooks 50:21
And also, when they were giving me tasks to walk anywhere, stuff like that, I was going really fast, and they were saying, No walking fast, that’s something where you can do easily, because it’s not using mainly using your brain. You have to do things slowly, because that’s where you’re using your brain, it becomes a, sort of like, almost like a, I don’t know how it works, but I was going hell for leather or anything.

Dave Brooks 50:51
Any exercises that the physios gave me, I was just doubling it, you know, which may have been good may have been bad, I don’t know, but I feel fine now, I sort of, I say I’ve talked to my friend about it. I’ve come across somebody else.

Bill Gasiamis 51:07
I reckon you’re trying to convince yourself more than you’re trying to convince them.

Dave Brooks 51:11
Yeah, absolutely it’s like, it’s a self drive thing. It’s not, you know, but there is an element of saying, Look, I’m okay, but it’s almost like you’re overdoing something, you know, to try and prove a point, because you don’t want to feel that you’ve been singled out or ill, basically.

Bill Gasiamis 51:34
Fair enough.

Dave Brooks 51:34
But it’s some, I think now it’s sort of, I’d say it’s like 98-99% fixed.

Bill Gasiamis 51:42
Yeah, I was going to ask you about like, your time from hospital to home and then back to driving and back to work. How did all of that happen? How did it unfold?

Dave Brooks 51:56
So I was in hospital for a couple of weeks. I then had so I couldn’t drive for two months, so I stopped doing any work. I’m freelance contractor, so I can choose to work when I like, and it was after when I could start driving again. That’s when I went back into I had, like, a month or left on that contract. So I went back in and did some stuff, and it was fine. I wasn’t, I was only operating at probably 70, 75% at best. Outwardly, inwardly, I think it was probably less than that.

Dave Brooks 52:39
But you don’t admit it to yourself, you think it’d help you, this would be alright. You know, it’s just trying to be positive about it, and you can’t, I don’t think you can be truly honest. I mean, the main thing, I mean, Barbara was fantastic, did freaked her out, and I think part of trying to show that you’re not as ill as you are, particularly so you don’t freak your kids out, you know. I mean, our kids are they’re older.

Bill Gasiamis 53:06
But pretending things are better than they are so that everyone else stays calm.

Dave Brooks 53:12
But the good thing about having kids is you can train them to have the same sense of humor as you and hate the same things that you do. So, you know, they’ve got a fantastic sense of humor. So, you know, that’s a common thing, that can disguise a lot of the you can overdo that sort of thing, but I think it’s got a fairly dark sense of humor, so that’s fine.

Bill Gasiamis 53:37
Very United Kingdom, isn’t it? It’s very common in that I think part of the world.

Dave Brooks 53:42
I think so, yeah, I think so. I know, having worked in America for a bit for a company, I couldn’t understand British sense of humor, they could not understand sarcasm, and they can’t understand flippancy if you’re flippant about something, they don’t understand well, not all people, but a lot of people in the workplace don’t get they think that if you’re being flippant, you’re not serious about what you’re doing, and there’s a group of us were working now on and off for about a year.

Dave Brooks 54:15
We’re working backwards and boys in various places, and we used to play on that because we thought it’s hilarious.

Bill Gasiamis 54:24
Because you’re so laissez faire about something.

Dave Brooks 54:27
Yeah, well, or just saying something like stupid and trivial or childish, or something like that, and they look at you like you’re completely mad. Anyway, yeah, I think one of the early things I said to you, and when I made originally made contact, was that I think having a sense of humor is is a good scent as a good portion of of recovering because, you know, even like silly situations, like in the people that you’re in the. Bed next to a hospital, there’s just some odd stuff going on.

Cerebellar Hemorrhage Recovery Coping Mechanisms and Reflections

Dave Brooks 55:04
You know, I used to regularly when some people came into hospital, because I was all wired up because, my blood pressure, don’t know about you, my blood pressure was up at like, 250 over something, at one point, massively high. So I was all wired up for probably most of the time I was in there. But I used to love when people come in and they just sort of like, you know, you sit there, you got all this stuff that I just thought, like, if you go to the toilet, you have to take it off. But I just don’t, like, grab it, rip it off and go.

Dave Brooks 55:38
I had this idea that what I was going to do, but a mother in law, she had a walking frame at one point, and if people came around to the house after they knew it was to go to the door, and with the walking frame, they open the door and then you go, it’s a miracle I can walk. But I was told that probably wasn’t a good idea. But, you know, I think it’s it freaks some people out.

Bill Gasiamis 56:08
I think you gotta laugh about it. I know that it’s harder for some people to laugh about the version of their particular stroke. You have to find the humor, because it is how it breaks those circuits of crappiness that’s going on, all the terrible things that are happening, like you have to be able to find somewhere to laugh and give yourself a bit of relief, a bit of relief from all of the stuff that you’re dealing with that you’re not trained to deal with, that you don’t have the skills to deal with.

Dave Brooks 56:34
You’d never expect to you never expecting it, that’s the thing you know is.

Bill Gasiamis 56:39
I know, and there’s people that go through a lot of pain after stroke, you know, physical pain and all that type of thing. And I get it, I just feel like there is no place for ‘There’s nothing funny about stroke. That comment, I don’t think is helpful to any human being, like, there has to be something funny even about the worst version of the stroke, like there just has to be so that you can get a little bit of reliefs, get some endorphins into your body, and make yourself feel better, even if it’s for 10 seconds or 15 seconds.

Dave Brooks 57:19
I would always argue there’s pretty much humor in anything, sometimes, you may not feel like that, but I think it’s, you know, it’s just bizarre situations. You think this is just ridiculous, you know? But I think it’s, it is about having a sense of humor. Is about being positive, and it’s not big, not not freaking out. But there’s, there’s such easy things to say.

Bill Gasiamis 57:46
Correct.

Dave Brooks 57:47
You know, and I don’t know whether that’s some, you know, just saying that is not enough. No, I don’t think I couldn’t advise people who’ve really had a stroke. Because I say ‘Well, just, you know, have a sense of humor, you know, deal with everything in little bits and just be positive. But it’s like saying to somebody who’s got depression, oh, come on, snap out of it doesn’t work, you know, you have to have a different approach. Yeah, that’s how it works to work.

Bill Gasiamis 58:19
And you drove again, and you’ve got an income still, and you don’t have to worry about the house being taken by the bank, and you haven’t got a medical a list of medical bills. Like, yeah, it’s a completely different, subjective experience that each individual has. Like, each stroke is different and affects people differently, it’s same.

Dave Brooks 58:39
Yeah, in the UK, things have got worse, but haven’t, we don’t have to pay for medical treatment. Well, we do, but we pay, it comes out with.

Bill Gasiamis 58:50
In a way that happens in America, which is really dramatic for some people.

Dave Brooks 58:55
I mean, it’s not perfect here, no.

Bill Gasiamis 58:57
We haven’t got back to how long it took you to get back to driving and all that other stuff.

Dave Brooks 59:07
So, I was driving within two months of coming out hospital. So that would have been, you know, two and a half to to to about three months.

Bill Gasiamis 59:16
Was that a retest?

Dave Brooks 59:19
No, no. Didn’t have to do it. No, you just, you just had to let them know. That was all I had to do. There’s no, I think there are certain medical conditions where you have to have a retest. If I’m honest, if I was having to do a retest, I’ll be thinking.

Bill Gasiamis 59:40
Because you want to know you were a driver, and you want to know where you’re at.

Dave Brooks 59:45
Yeah, exactly, I’m quite happy, if they bring in so you have to retest when you’re 75 or 80, I’ll be thinking, Yeah, that’s a good idea. But so I was back working again. I wasn’t working particularly hard. I was working on a side project as well, which I sort of had to it was a startup thing, I was developing an app for them, and I didn’t really, I sort of got bored with it. So it was actually worked out quite well, but there was some pressure being put on me to carry on. When are you going to be back? When you going to be back? When you give me back?

Dave Brooks 1:00:21
I said ‘Well, I don’t know, you know. And eventually I just backed away from that. I’m still, you know what? In fact, I’m still working with some of those same people on some stuff I’m doing at the moment. But I sort of enjoy work. I don’t consider work-work. Work, for me, is a paid hobby, and I only do things I’m interested in. I’ve only ever done that, I’ve been lucky enough that it’s been reasonably well paid.

Dave Brooks 1:00:50
You know, if something’s not working, I’m not I don’t think anything of just thinking, No, that’s it quitting. I’m not doing that. I only can do this. But it’s, I think, you know, that’s possibly just my same part of my character that keeps me driving forward.

Bill Gasiamis 1:01:11
Yeah, the ‘Not reflecting backwards, well, obviously you’re aware of the past, the things that have you’ve been through, the family’s been through, you’ve gone through the other people you know been through. What you’re saying is you don’t dwell on those.

Dave Brooks 1:01:31
That’s exactly.

Bill Gasiamis 1:01:32
And it sounds like you don’t do a lot of, Why me, kind of questioning, which is never helpful other other than why me? What’s the purpose of this stroke? If you’re doing that, I think that’s helpful. Like, what’s the point? Why did it happen to me? What can I how can I transform this maybe, but you’re not dwelling on the negative side of life.

Dave Brooks 1:01:55
No, I never have, it’s always, I’m pretty positive about things, but I think, you know, that’s easy to say. It’s easy for me to say, and do you know it’s not, it’s not all the time, yeah, but I think that’s quite a difficult thing. I’m not stupid enough to think that could work for everybody. You know, some people say.

Bill Gasiamis 1:02:15
Yeah and I don’t say that for that reason. What I like doing, is kind of just demonstrating the difference in people and, and, and what that might do is that might somebody make somebody curious about, why does Dave do life like that? And I wonder if I could do life like that, and what would be the benefits of doing life like that, and how might that version, in some particular situations, help me.

Bill Gasiamis 1:02:38
That’s kind of like what the podcast is about, it’s about to show the differences 320 episodes so far, like it’s about showing all the different versions of variations, so that people can cherry pick what they want out of a conversation and go, I like what they’ve said. I’m going to take that one thing out of the whole interview.

Dave Brooks 1:02:58
When I was, somebody mentioned your podcast. I thought I’d just go and have a quick look. And there I was saying ‘Oh, that’s quite interesting. Because, there was a few things about Cerebella stroke. There’s obviously some people who are a little bit more serious about things, that’s fine, but I think it’s, I think not dwelling on the past, but learning from the past is a good thing.

Dave Brooks 1:03:29
And because if you just think, like, say ‘Why me? Why did I get this thing? You go around, I think you’re rather than a bloody spiral backwards, you know, it’s that’s just the way I deal with things.

Bill Gasiamis 1:03:43
I quite like that version that’s similar to me, although, you know, I found myself in the trap every so often when things were really bad, physically and mentally, and when my cognition wasn’t the best, I really found myself in the hole and kind of ‘Oh my gosh. Like, I don’t know, what do I do here? I’ve never been here before. How do I handle this? And then it’s like ‘Okay, let’s find the solution. Let’s try and handle it, and let’s get out of it, if we can, and as quickly as possible, counseling, for me, was huge, and for me, counseling was more about that mental gymnastics.

Bill Gasiamis 1:04:22
It’s all about kind of getting, getting my my ideas and my thoughts tested by somebody else, you know, like you, you ‘Oh, yeah, I’ll go for that drive if they want to test my driving. I’m the same ‘Oh, I’ll go for that counseling session so I can have my thoughts and my ideas tested by somebody else, and then I can get a different perspective and a different approach, and then I can take that with me and do something about it or not.

Bill Gasiamis 1:04:56
That’s kind of what was for me that worked. And this is what. Every you said, this is, you know, potentially cathartic for you. This is what every session is for me, this is like a cheap counseling session, and everyone who attends.

Dave Brooks 1:05:11
I’ll send you the bill.

Bill Gasiamis 1:05:12
Yeah, he’s doing me a service they just don’t know about, you know.

Dave Brooks 1:05:16
So the counseling you have, was that something that you was sort of part of some care package, or was it something that you realized you had to sort out for yourself?

Bill Gasiamis 1:05:29
I’m quite intellectual, and I always have been when I was a little kid, when I was teenager, I was always the person that people came to for problem solving, and I didn’t realize that that was a gift that I had personally, and that it was working for other people, and they found the need to ask me questions about how they should go about resolving a potentially challenging situation. And it wasn’t advice like ‘Do this, do that. It was more about like having a conversation. You know what? It was, a Socratic conversation I used to have with people.

Bill Gasiamis 1:06:00
But when you’re 15 and you’ve got no idea what the hell is Socratic conversation is, you find yourself in weird places of not being understood, and people kind of wondering, who is this weirdo? Why is he among us? And I felt like always out of I felt like I was always the the odd one out in groups of people anywhere. And it was more it wasn’t about the fact that I didn’t I got along with everybody because I was quite bubbly and all that kind of stuff, and I could park my Socratic states often enough so that I could just get along with people.

Bill Gasiamis 1:06:39
But it always bugged me as to why I was having conversation with with people, and then they would sometimes gloss over and just kind of fade away and stop the conversation because I was taking it somewhere where they weren’t and I didn’t realize. So I went to counseling when I was 25, and at 25 I haven’t stopped, and it’s actually, is literally now that we’ve kind of had this conversation together, it is to test my thinking and my ideas and the way I go about my life.

Bill Gasiamis 1:07:14
So that I’m not the only one thinking these things and think I’m right all the time or wrong all the time, and I just love it. It’s a completely different version of counseling.

Dave Brooks 1:07:26
Interesting, counseling is something that I would never consider, because I think I have a way of a sec. I don’t, I do internalize it, but it’s almost like I’m, I’m solving those problems. You know ‘This is bad, this is good, this is bad, this is good. I can do that, that’s fine-that’s fine. I don’t think about it, you know, all don’t think about much of the time. I’m pretty shallow. But you know,I’ve always because my my brain is occupied by something, whether it’s building drones or writing software or, whatever it is I have something positive is something.

Dave Brooks 1:07:26
I guess it’s something that I latch on to, that I do, and that’s I use talking about when you’re 14 and 15, I didn’t, you know, like most people At age you hang around with a load of people. There was nobody that I was really friends with, and they’re people I’ve never kept in but I would just bumble along and not think about things too much, which is sort of quite a shallow way of thinking, but it’s actually quite a good way of viewing.

Dave Brooks 1:08:37
Moving on, you’re not concerning yourself with too much sort of crap that’s around you thinking ‘Oh, I can actually go and paint that tank on my motorbike when I get home. You know, it’s something positive.

Bill Gasiamis 1:08:50
It’s local thinking, it’s a good I think an analogy is like it’s local thinking instead of global thinking, right? And most people are dealing with now being inundated with information from all around the planet on a mobile phone, and instead of understanding the issues that are happening in your town, in your suburb, in your city you’re dealing with, and distracted by issues that are happening far, far, far, far away that you have no positive influence over and that is kind of what you’re describing.

Bill Gasiamis 1:09:23
You’re describing locally, addressing and assessing the things that you need to get through your day in a, you know, in a very calm, collected way, solving problems, helping out where you need to help out, fixing the things that need to be fixed, and then moving on to the next part of your day. And that’s kind of me. My method of doing that is your method is being occupied with a task. My method of doing that is communicating, it is talking it out, and tasks I can’t when I’m having a bad emotional or psychological.

Bill Gasiamis 1:09:23
Google response to something, I cannot do a task if my life depended on it. It doesn’t matter what the task is, I just can’t switch that part off to do something to take me out of that space where I’m where I have to cognitively overcome the situation, whatever it is, once I cognitively overcome it, no matter how dramatic it is, and the world could be falling down around me, I’m fine. I can get on with life, because I’ve grappled with it cognitively.

Dave Brooks 1:10:39
So I think I’m sort of a little bit opposite to you, because I think I can’t remember who somebody once said about the amount of news that’s coming in. Somebody once said something like, you can’t know everything, and I think there’s you’ve got to be aware of what’s going on in the world around you, but I sort of think you know if I am feeling bad or trying to work out something, what I like to have to do is something that I’m doing that I’m thinking about.

Dave Brooks 1:11:08
You know, when you’re sort of lying in bed at night, drifting off to sleep, you know, you might be interested in fixing up motorbikes, fixing cars, or even planning on what you’re going to do in the garden or something boring like that, but you’re dreaming, you’re thinking something through, you’re solving a problem. You’re being a maker, which is, you know, maker is a big word these days. People think of it as physically making things, but writing software’s being a maker, doing the gardens, being a maker.

Dave Brooks 1:11:34
And it’s about sort of having some you set yourself a goal, like a project that you’re doing, and that’s thinking, well, how can I get that bit, that bit done? Now, I know I tend to, like, fall into that, and I know that Barbara wall, she’s, you know, when I’m really thinking about stuff, and I’m in that zone, thinking about things, you know, I do get scaling comments about you, just you like a zombie again. It’s because that sort of used to be a problem years ago.

Bill Gasiamis 1:12:17
Yeah, the outwardly appearance doesn’t look like somebody who is perhaps concerned or solving or whatever you you express things physically differently than quote, unquote, other people who look concerned about something they’re trying to overcome or so.

Dave Brooks 1:12:39
Well sometimes I, you know, you know I am like, I can go on to autopilot and respond to somebody talking to me, yeah, but my brain is whizzing away thinking about some other thing, which I think is more important, because I haven’t worked out how to solve this particular problem. But counseling is something I don’t think necessarily I would benefit from, but yeah, occasionally I spoke to people, though.

Bill Gasiamis 1:13:10
Yeah a lot of people say that, and I get it too, right? Because sometimes the sub sessions is like, what the hell was I doing here that session? So I set the parameters very differently when I went to counseling, I didn’t go there with a diagnosis, and I didn’t go there to receive a diagnosis, or to get a diagnosis, or be taught to be told you’re experiencing this, you have this, you have that. I went there as a learning experience, you’re a counselor, you’re older and wiser than me, so I was 25 My counselor was probably in their late 50s when I met her.

Bill Gasiamis 1:13:44
And I’m going to come here and I’m going to tell you my dumb shit, and you’re going to tell me whether I’m right or wrong, and I’m going to learn from you. I’m going to ask you questions, like ‘Why do people because I used to have this thing, people would come up to me just start like, you know, handling me like touching me. And I used to have people who I labeled like touchy feely. They’re very touchy feely, and I don’t know why I’m attracting them, but they’ll come up to me, I’ve never met it before, and they’ll start touching me and hugging me and doing shit.

Bill Gasiamis 1:14:14
And I’m like ‘Why is this happening to me? And I would go and ask questions, not about me specifically at that moment, but I would ask questions about, why would somebody have the ability the confidence to come and do that to me when they don’t know me, etc? And I would perhaps get a hypothesis on the thinking of that person. And then I would, I might go to my counselor and ask questions like, Why does my particular family member behave like that? And then she might give me a hypothesis on that, and that might be, well, that they were born before you.

Bill Gasiamis 1:14:54
They were a single child they had, and she would explain just some things that wouldn’t justify their behavior, but might give it a little bit of background, so that my response then was instead of a reaction, it was a response from knowledge, rather than a reaction from my head going, This guy’s a complete idiot. I’ve got to punch him in the head, and then it enabled me to deal with people differently and give them grace for who they were, rather than get offended for how they behaved.

Dave Brooks 1:15:33
Yeah, I tend to, quite quickly, distance myself from when I was younger. I couldn’t, I wasn’t mature enough to even even verbalize it. But if my stomach told me that there’s something not quite right about this person, I just keep away. You know, it’s just, I’ll go off and do something else. Because when you get a bit older, you’re able to, especially when you’re in business and you’re working with people.

Dave Brooks 1:16:07
Because sometimes, to be professional, you can be work with somebody, I have this thing that you can work with people that you like and are really good. You can work with people that you don’t like and are really good, and you can work with people you don’t like and are terrible, whether they work for you or whether you work for them, and you have to develop a strategy on how you deal with that, because sometimes you can’t just run away.

Dave Brooks 1:16:38
You can’t just live, you know, for whatever, because they might be paying you lots of money or something, so, you know. And when you’re younger, you don’t have, they sort of like, you know, you don’t have the hours of knowing correct how to deal with that. And then you make lots of mistakes along the way. But my default action is ‘No, there’s something you know, doesn’t. It’s not particularly male or female, you know.

Dave Brooks 1:17:06
It’s sort of like you’re thinking, I don’t. It’s something about this, something about this aura here, or something, whatever it is that I don’t quite like, I won’t explore it, I won’t try and solve it, unless I have to, I’m going to walk away.

Bill Gasiamis 1:17:23
I’m out of here, that’s more me. Now, at the beginning, it was my personal life was influencing and bothering my work life, because I was seeing those behaviors in work colleagues and becoming overly confrontational, and I don’t mind the confrontation that doesn’t always go down well, and it’s like trying to trans, trying to trying to occupy both worlds without being a little kid who’s 14 when I meant to be an adult who’s 25 like you know, was trying to grow up in that space.

Bill Gasiamis 1:18:07
So I had my the parameters on on counseling were very were set so that I could walk away a more intelligent person and have more ways to solve the same problems that you solve in the way that you solve them.

Dave Brooks 1:18:25
And I guess when you come across those situations again, you know you’ve got a better understanding of why that is. See, I don’t really want to know why, I think you know, it’s interesting. It’s interesting this conversation, the thing I find I do a lot, which I don’t know whether is clever or just completely childish, in a situation where you can’t just run away, I spend a lot of my time working out how I can irritate this person without them realizing that I’m that I’m doing it deliberately.

Dave Brooks 1:19:00
When you hit on it, you’re thinking, yeah, that’s good, tiny things sometimes, but and then it’s sort of, I think it’s almost like a schoolboy behavior. I think, you know, you have to, you have to have mechanisms to deal with just idiots, because they can make a lot. It doesn’t matter, I say it doesn’t matter whether you work for them or whether they work for you. You know you can be in a professional situation, but, yeah, I think that’s possibly my character, which has given me the ammunition to deal with a situation that wasn’t expecting.

Dave Brooks 1:19:42
So I thought something, I say, this is the first time I’ve really talked about it with somebody in any sort of depth, other than the silly things that happened whilst I was in hospital, when I was walking and planning, I was going to sort of wind people up when they come to the door or anything like that.

Reflecting on Mortality and Career Goals

Bill Gasiamis 1:19:58
Yeah, relationships get tested during stroke, all kinds of relationships, personal, work ones, etc. And you there’s a lot of stroke survivors who will go, I am not putting up with this anymore. I’ve got too many other things to be dealing with and overcome, and they just pause relationships. They cut relationships off that weren’t working, that they were just being pleasant about or nice about and they just move on.

Dave Brooks 1:20:22
I think when you have touched or been in close to touching your own mortality, you think about things slightly differently. I try not to, because I think I still think I’m going to live forever. But I know I’m not, you know, I’m thinking, how many more years could I be writing software and developing apps and flying drones? I’m thinking, maybe 10-15, years. Well, don’t you know? Well, I’ll be writing software and I’m 80, thinking now, that’s a challenge.

Bill Gasiamis 1:20:30
Yeah, why not?

Dave Brooks 1:20:39
But yeah, well, I think that’s, it’s a goal, but I think it’s not something I’m going to stick to, but I think it’s something where, you know, you sort of, I’m not one for making, you know, making lists of, you know, these are the things I’m going to be doing. Because the way that I think I deal with life is, somebody once explained it to me about how, why, I was sort of like got interested in different things.

Dave Brooks 1:21:25
He said ‘Dave, you’re a bit like a a bloke that’s sort of like bumbling around in a dark room and you can’t see anything, and you sort of go ‘Oh, this feels What’s this over here? This feels quite nice ‘Oh, what’s this over here? Oh, that feels quite nice. And it’s sort of way of just sort of thinking, just moving between things that you find interesting for some reason, you know. And you can never quantify what that reason is, whether it’s work, whether it’s you know. So I like to describe my work as a paid hobby.

Dave Brooks 1:22:02
And I was talking to somebody years ago at a at a wedding, and I was just sort of, I can’t always talk to somebody that I knew and that there’s a woman over the other side of the table says ‘Oh, sorry, I couldn’t help but overhearing. So I think that’s a really good way of dealing with your you know, why do you stick with a job that you hate and people that you don’t like? There’s no reason why you have to stay there. If you have the confidence that you can do something, whatever that is, or learn how to do something, go off and do it.

Dave Brooks 1:22:35
You know you might be well paid, but sometimes you know they’re just golden handcuffs. You know you have to, you know you have to find a way to earn enough money to live. I mean, I’m fortunate, I don’t have a mortgage or anything like that. So, you know, but I could still, you can. We can all do with more money. But I think you know you have to do the things that that satisfy you, for some reason, yeah, particularly people having worked at organizations like the BBC.

Dave Brooks 1:23:04
Where they have final salary pensions, and it’s all like this dick waving contest about how many years service they’ve got. So you know, how much they will get when they retire, and I’m thinking they’ll probably drop dead within a year. What’s the point? You know, just go and do the things that you enjoy.

Bill Gasiamis 1:23:27
I believe in that too. I love that as we wrap up, because I’m really enjoying this, but that’s right, we will need to wrap it up at some stage. But as we do wrap up, let’s talk about the last three questions that I ask everybody, which is, what’s the hardest thing about stroke for you.

Dave Brooks 1:23:54
Probably dealing with how my family are impacted by it children, you don’t want to worry about the same thing, you know, with my wife, Barbara, but because I always felt whatever the situation was, I’ll be able to find a solution, to be able to do something. But it’s how it freaks the people that are close to me. I don’t have a big circle of friends, you know, I’m sort of a bit of a bit of a lone wolf in a way. I think it’s close family that is, they’re the ones that are impacted by, I think, more than I was, I’m going through.

Bill Gasiamis 1:24:37
The fear or maybe losing you.

Dave Brooks 1:24:41
Exactly, yeah, it’s not about, you know, it’s because we’re reasonably close family. Well, very close family, reasonably is the wrong word. But you know, it’s, we’re all fairly, sort of easy going. So when something like this happens, it’s, especially after I was thinking for the kids, I remember, my daughter wrote me up, she said ‘I don’t know what to say, I don’t know what to say. I said ‘Well, I’ll be alright, be fine, you know, in some shape or form, I’ll be alright.

Dave Brooks 1:25:16
You know, I won’t be if I’ve been squished against the, you know, under articulated truck or something. But with this, this is fine, you know, there’ll be some some way through it. So that was difficult to deal with. I was worried more about that than anything else, if I’m honest.

Bill Gasiamis 1:25:34
What has stroke taught you?

Dave Brooks 1:25:39
An interesting one, I’d slightly switch it round to something I touched on earlier, which is very occasionally, I thought about, how would I react if I had some serious illness, and I reacted in the way that I was happy with. So what I have learned is that what I had sort of not planned but vaguely thought about in the past was the way I behaved, you know, in a positive way, and not not let it impact me. So I think I don’t think my character has changed, particularly. I think I one thing I have learned is that I don’t want to live too far from a hospital.

Bill Gasiamis 1:26:46
Yeah, fair enough.

Dave Brooks 1:26:47
I used to my both of my brothers live in the middle of nowhere, and I always thought I want to live in the middle of nowhere. Barbara, no and but now we, you know, when we thought maybe about moving or something like that. I want to be somewhere close to a hospital, preferably a university hospital, that’s not more than half an hour away. Because, yeah, and I would imagine it’s going to be difficult in Australia, because I speak a country.

Bill Gasiamis 1:27:17
Well, it is if you’re in the middle of the country, if you’re living in like the outback ‘Oh my gosh. I’m actually, I was at a Stroke Conference last weekend, and they’re talking about five hours to hospital for somebody who has a stroke in the middle of the Northern Territory.

Dave Brooks 1:27:37
That’s a big proper if that’s a big proper bleed. You know that’s you’re not going to survive that.

Lessons Learned From Cerebellar Hemorrhage Recovery and Supportive Community

Bill Gasiamis 1:27:44
That’s terrible and that they’re one of the things that the challenge about is the people who live there typically are annoyed with the fact that takes five hours to get to a hospital, right? And that’s fair enough. And then the government, from a government’s perspective, the government would say ‘Well, there’s only 100,000 people living in there, we can’t have a hospital the size of the one in Melbourne that services 5 million people, and it can’t have all the machines and all the buttons that go ping like they just can’t do that. And that’s the challenge that people face.

Bill Gasiamis 1:28:20
But I agree with you, I am very happy that I was able to drive to at least in my like where I live, there’s a hospital five minutes away, and then the central business district where I was working, when the second bleed when the third bleed happened, I was probably a kilometer from the hospital. So I reckon that’s a very good thing to aim for, to be close to hospital.

Dave Brooks 1:28:48
Yeah, and I think that’s something you own that only really crosses your mind when you’ve like, say you’ve touched your mortality. You know it’s just been practical.

Bill Gasiamis 1:29:03
Practical, yeah, I like it.

Dave Brooks 1:29:05
Which is, you know, but it saves your life.

Bill Gasiamis 1:29:11
Very good outcome, and then I would like to know there’s other people listening. They’re going through our journey, there might be at a different stage of it, something more dramatic, less whatever the stroke survivors. What would you like to say to them?

Dave Brooks 1:29:32
Sort of all the things that I’ve said previously, which are easy to say, and I found I could deal with them that way, but I can well imagine, for other people, it’s difficult, you know, the sense of humor thing is a good thing, being positive and just dealing with everything, just, you know, shelve the stuff. You can’t solve everything all in one go, but what you can do is.

Dave Brooks 1:30:00
Like, as you said, you deal with the serious stuff ‘Will I be able to do that? Will I be able to do that? And sort of, like, not forgetting about it, you know, you can’t just bury it. But I think, you know, just deal with it as positively as you can. And I think, you know, having, having the family around is a big thing. You know, I really feel for people that have had strokes and they’re maybe in off the street or something like that, which is or for whatever reason, they don’t have close family.

Bill Gasiamis 1:30:33
You need to build a community for sure. You need to have friends or family, someone that you can call on, you know, receive a plate of food, of from or lend an ear. You know, have somebody lend an ear to you like you need to create a supportive community around you. If you haven’t got one, that’s probably a priority.

Dave Brooks 1:30:54
So, I’ve never really talked about this with a wife, yeah, or anybody, because it’s not, I didn’t, it’s not a not. I didn’t see the point. But it didn’t, sort of, we’ve touched on sort of things, of course, but I think it’s, you know, that’s my nature. But I think for other people, who like to talk about things, if that’s the thing that solves it or helps them deal with those problems, that type of problem, then that’s good. You know, you’ve got to go with what works for you, fundamentally.

Cerebellar Hemorrhage Recovery Conclusion and Final Thoughts

Bill Gasiamis 1:31:32
Dave Brooks, thank you so much for joining me on the podcast.

Dave Brooks 1:31:36
It’s been like, I say, it’s been very cathartic, because it’s not something I’ve particularly thought about, so it’s actually been, I think, a really good session. It’s fantastic to meet you and see that you’re doing so well. The podcast is doing very well as well. And it’s, you know, I’d imagine in Australia, where you’re doing sort of live events and those sorts of things that would imagine, these also, like counseling, because you’re speaking to so many people.

Bill Gasiamis 1:32:07
Indeed, I’m a counseling aficionado, what can I say, I just go and get it anywhere I can, wherever I can, but thank you, mate. I really appreciate it.

Dave Brooks 1:32:22
It’s been fantastic, and yeah, great to meet you.

Bill Gasiamis 1:32:27
Well, that brings us to the end of another episode. Dave’s journey is a testament to the power of humor and resilience and the importance of taking things one step at a time, his ability to stay grounded and focused on what he can do rather than what he can’t is truly inspiring. If this episode has helped you in any way, or if the podcast has been a source of support for your recovery journey, please consider supporting us at Patreon by going to patreon.com/recoveryafterstroke.

Bill Gasiamis 1:33:01
Your support allows us to keep sharing stories like Dave’s with stroke survivors and caregivers worldwide, making a real difference. Thank you to everyone who has left a review on iTunes or Spotify your feedback, helps others find the show and builds a community of encouragement and strength. If you haven’t yet, please consider leaving a five star review or sharing your thoughts in the comments on the YouTube channel, it truly means a lot. Thank you for joining me today, and I look forward to seeing you in the next episode.

Intro 1:33:35
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individuals own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:34:05
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:34:30
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Intro 1:34:56
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The post David Brook’s Inspiring Journey of Overcoming a Cerebellar Hemorrhage appeared first on Recovery After Stroke.

Alina Gonzales’s stroke recovery story is one of patience, progress, and resilience, inspiring stroke survivors to keep pushing forward.

Support The Recovery After Stroke Through Patreon

Highlights:

00:00 Alina Gonzales’ Introduction and Recovery Journey
02:29 Alina’s Stroke Experience and Initial Deficits
04:36 Progress and Challenges in Recovery
07:37 Community Support and Participation
11:41 Hyperbaric Oxygen Therapy and Its Impact
17:00 Daily Life and Adaptations
22:36 Coping with Stroke and Future Goals
33:08 Support System and Gratitude
34:33 Final Thoughts and Encouragement
43:06 Closing Remarks and Resources

Transcript:

Introduction – Alina Gonzales Recovery Journey

Bill Gasiamis 0:00
For those of you who have found relief, encouragement, or simply benefited from the recovery after stroke podcast, I’ve just recently set up a Patreon page to help keep the podcast running. Since 2017 I’ve been covering all the costs myself, but now I’m reaching out to our amazing community for a bit of support. If this podcast has helped you on your recovery journey, joining our Patreon is a way to give back and ensure it stays available for others who need it.

Bill Gasiamis 0:32
Your support will help cover the costs of recording, editing, and hosting, so we can keep bringing you the content that’s made a difference in your life. It also supports the transcription of episodes into subtitles on YouTube, making the podcast accessible to listeners with hearing challenges. Memberships start at just $6 per month. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke. Your help makes a big difference and I’m so grateful for your support. Thank you.

Bill Gasiamis 1:07
Now this is episode 328, and my guest today is Alina Gonzales, who has appeared on the podcast in the past. Alina is a resilient stroke survivor who has made a significant stride in her recovery journey. Since we last spoke, Alina’s story highlights the realities of stroke recovery, from the challenges of rehabilitation to the power of community support. With unwavering determination, she’s made incredible progress in areas like communication and mobility. Join us as we explore Alina’s inspiring journey and her message of hope for stroke survivors everywhere.

Bill Gasiamis 1:46
Alina Gonzales, welcome back to the podcast.

Alina Gonzales 1:49
Thank you.

Bill Gasiamis 1:51
It is so good to have you back on the podcast, it has been almost a year since we spoke last time.

Alina Gonzales 1:59
This year, time flow is flown by a year.

Bill Gasiamis 2:05
Time has flown? Has it also gone slow?

Alina Gonzales 2:10
Yeah, very slow, because recovery in my mind, I thought that pushing ankle over here, long and recovering like that, and it takes take a couple of weeks, but a very long process.

Alina Gonzales – Stroke Experience and Initial Deficits

Bill Gasiamis 2:29
Yeah, in your mind, recovery was going to happen quickly. These things don’t happen quickly, it’s one of the things that stroke survivors get impacted with. Is that the understanding that this could be a bit of a longer process than first thought. So you had a stroke in 2022 is that right?

Alina Gonzales 2:56
2020 actually.

Bill Gasiamis 2:57
In 2020 and what happened to you Alina?

Alina Gonzales 3:02
I was driving, and then I had ringing in my ear, and I called 911 because my vision was a little bit flurry and severe ringing in my ear. So I didn’t know was going on, I had no idea.

Bill Gasiamis 3:20
And what was the underlying cause of it?

Alina Gonzales 3:24
In AVM.

Bill Gasiamis 3:26
Arterial Venous Malformation as well.

Alina Gonzales 3:29
Yes.

Bill Gasiamis 3:31
When you when you got out of hospital, what were the deficits that you were left with?

Alina Gonzales 3:36
I had a stroke and a G-tube and a difficulty on my left side.

Bill Gasiamis 3:46
And difficult on your left side the trach, is that what has made your voice a bit croaky.

Alina Gonzales 3:53
So when the hospital just at the Craig, for so long I’ve paralyzed vocal cord as a result.

Bill Gasiamis 4:04
I have a paralyzed vocal cord because they left the trachea in too long.

Alina Gonzales 4:12
I received very poor care at the hospital, but partially, I think, because of COVID.

Bill Gasiamis 4:20
Yeah, you were right in the thick of things. So how long have you been home now?

Alina Gonzales 4:30
Like, three or four years now.

Alina Gonzales – Progress and Challenges in Recovery

Bill Gasiamis 4:36
I remember last time we spoke, and for people who are watching and listening, they should go back and check out the first podcast interview that we did. All the links will be in the show notes, your mom had to be involved in that discussion.

Alina Gonzales 4:54
Yeah, for a long time I have very, A difficult time speaking, and I think is better, a little bit better with time and practice.

Bill Gasiamis 5:12
Your your recovery has improved a lot, like, compared to what you were last time, I’m noticing a massive difference, your level of communication, understanding, your independence, everything has changed a lot.

Alina Gonzales 5:32
That’s so good to hear.

Bill Gasiamis 5:34
Have you noticed that it’s changed a lot? Where are you at with it all?

Alina Gonzales 5:38
No, I’m good. Like, moving out and then that scope and now realize the gains that I’ve made. It’s very difficult to be in your own mind and those changes that you’ve made.

Bill Gasiamis 5:56
It’s very difficult to notice the changes that you’ve made when you’re in your own body, feeling and experiencing how it’s, how it now, how it is now, how your body kind of so when you left hospital, were you able to walk, or anything like that?

Alina Gonzales 6:19
No, I wasn’t able to walk, I have a very difficult time walking right now. I don’t have drop or anything like that, but have issues. So I have a lot of balance issues, and so it makes it very difficult to walk.

Bill Gasiamis 6:37
You have vestibular issues, so your balance is affected, and you don’t have drop foot, but the challenge with walking is related to your balance.

Alina Gonzales 6:48
Like my body space, like recognition of one of my bodies in space.

Bill Gasiamis 7:00
I think they call it proprioception issues. Your body on the left side doesn’t, isn’t able to report back to the brain as to where it is in space.

Alina Gonzales 7:12
Correct, yes.

Bill Gasiamis 7:13
Okay, so that puts you off balance, and it makes the body overcompensate, and always kind of put you out of whack with your compared to your right side.

Alina Gonzales 7:25
Yes, unfortunately, I’m very strong, though I think I’m very strong and capable and love ways, but disabled to walk in. Yet it’s a keyword.

Community Support and Participation

Bill Gasiamis 7:37
Yeah, is the keyword. I love it, your spirit is amazing. When you were on the podcast last I thought it was pretty cool to have you on because you were in a bad way compared to where you are now, I think you’ve improved tapes, like I said, but you’re still more interested in being on the podcast in the hopes that you’re going to help raise awareness and help other people. So how have you been occupying yourself in the last 12 months?

Alina Gonzales 8:16
A participant with a group, a support group, which I can’t emphasize enough, is so important for other survivors to be part of so I’m a member of different groups that talk about brain health and effective treatments for brain health as well.

Bill Gasiamis 8:41
Can you community is very important as made a big difference in how you navigate this.

Alina Gonzales 8:49
Yes, for sure.

Bill Gasiamis 8:53
Are those communities online or are they in person?

Alina Gonzales 8:58
Unfortunately, there’s not much around me were people interacting person because of COVID, taking time?

Bill Gasiamis 9:12
At least there’s online. I mean, online is a very good way for you to access community without being in a position where you have to travel, where you have to make a lot of effort to get to anyway.

Alina Gonzales 9:25
Yeah, it’s true here.

Bill Gasiamis 9:29
I noticed a few times when you’ve spoken just now, that you put your hand to your throat. Is there a reason for that? Does that help you in some way?

Alina Gonzales 9:37
By drinking, when they took it off, I had to cover up the hole and she took that habit I have in my mind, I saw how the hole sort of have it.

Bill Gasiamis 9:55
But it’s healed.

Alina Gonzales 9:56
Yeah, fortunately, it dropped. Doctor, I had to go get the surgeon, close it up with a couple of stitches, because it wasn’t here to open wounds, I was like a deep hole, and they switched it up, I think you use like four stitches, not many.

Bill Gasiamis 10:25
Just a quick break, and we’ll be right back with more of Alina’s journey. I’d like to take a moment to talk about something that’s been a big part of my own recovery journey, my book ‘The unexpected way that a stroke became the best thing that happened. In it I share my personal story and that of nine other stroke survivors who have turned their challenges into opportunities for growth.

Bill Gasiamis 10:47
If you’re looking for inspiration and guidance on your path to recovery, this book is for you. Get your copy on Amazon or visit recoveryafterstroke.com/book. And then it’s a gaping wound, and then it heals by itself, and it kind of closes over, and it connects, reconnects.

Alina Gonzales 11:08
It’s supposed to, but it tells us why the surgeon went in and used to cool out the hole.

Bill Gasiamis 11:17
Okay, so normally it heals on its own, but for you, it didn’t and they needed to sew it up.

Alina Gonzales 11:22
Correct, right.

Bill Gasiamis 11:24
Okay, right, and does it feel strange now? Is it always kind of feel a little bit different in that spot.

Alina Gonzales 11:34
Like I’m always, I see, but it feels normal. I’m very lucky.

Hyperbaric Oxygen Therapy and Its Impact

Bill Gasiamis 11:41
It sounds like you’ve done a lot of rehab, also with your voice. Have you been doing speech therapy?

Alina Gonzales 11:48
I went to a speech therapist for a long time, and she was very patient with me. She did the stimulation on my face, to work on the symmetry of my face, and to work on my voice. So that was very helpful, and she was very patient with me.

Bill Gasiamis 12:08
Very patient with you? Why did she need to be patient with you? Just because of your level of inability to talk?

Alina Gonzales 12:15
Yeah, I think that was perfect, and also deal with my insurance.

Bill Gasiamis 12:21
Your insurance making things hard as always.

Alina Gonzales 12:25
Yeah, as always, unfortunately.

Bill Gasiamis 12:29
Okay, are you still dealing with the insurance? Or have they stepped away?

Alina Gonzales 12:35
I’m still dealing with them, but I don’t go to speech therapy or anymore.

Bill Gasiamis 12:42
And are they covering some other therapies?

Alina Gonzales 12:43
Right now, I’m not going to have the therapies? But probably so in a couple months, because they were giving me a hard time, I was going to physical therapy, and they stopped coverage. And so I have to take a break and then restart and get a whole new referral from my primary care physician, and then restart. I got to do that very soon, but I took, like, a month and a half off to do the hyperbaric chamber. I did hyperbaric for about a month and a half.

Alina Gonzales 13:12
Yeah, hyperbaric oxygen therapy.

Alina Gonzales 13:26
Correct, yes.

Bill Gasiamis 13:27
Tell me about that, what was that like?

Alina Gonzales 13:30
That was I think it was very relaxing. Overall, it was very relaxing, but I’m just very hopeful that helps in some way, but the therapist said that I was a big patient with the results, so I’m just waiting for for the results to kick in.

Bill Gasiamis 13:53
Okay, so this particular hyperbaric oxygen therapy sessions that you’ve done, were they in consultation with some kind of a doctor, a medical professional, or was it just a private place locally to you, and you can just go and book some time into in the session there on your own.

Alina Gonzales 14:19
The physician that was there, and I booked a couple of sessions. Actually, I booked like I went twice a day, so I called the morning for about an hour and a half, and then in the afternoon by another hour and a half. That’s what they were my first drug patient.

Bill Gasiamis 14:40
And you went twice a day for an hour and a half each session. How many days a week?

Alina Gonzales 14:49
Five days a week, my mom was a saint. She would drive me for over an hour away and wait for me to go and then, during my session, then we go grab some food and then come back.

Bill Gasiamis 15:12
So five days a week, that’s a big commitment, but it seems like it’s worth it, right?

Alina Gonzales 15:18
I think so, yeah.

Bill Gasiamis 15:20
Did you notice any immediate changes, any changes in your cognition, in your clarity, in the way that your head felt?

Alina Gonzales 15:28
Not really, not yet. I’m very hopeful that I feel so dangerous very soon.

Bill Gasiamis 15:35
Yep, is that a therapy that you need to continue, that you’ll be able to continue Alina?

Alina Gonzales 15:41
No, they say that first stroke patient, so I won’t be doing it anymore, I reached my limit.

Bill Gasiamis 15:54
There’s a limit. Okay, I didn’t know that. So when you’re in the in the oxygen chamber, what are you doing in there? What’s the How does it work? What do you do?

Alina Gonzales 16:09
You lay back, and then you have a mask over your face, and you breathe oxygen, pure oxygen, for about an hour and a half.

Bill Gasiamis 16:21
Okay. And in that time you can read a book, sleep? What do they do?

Alina Gonzales 16:28
For you to read, but not sleep at all.

Bill Gasiamis 16:33
But not sleep?

Alina Gonzales 16:35
Yeah, they want you to use your brain as much as possible.

Bill Gasiamis 16:40
To try and stimulate things happening.

Alina Gonzales 16:43
Right, good.

Bill Gasiamis 16:45
Okay, that’s really cool. Is it expensive?

Alina Gonzales 16:50
Yeah, it was expensive. I’m still paying it off now, it adds up very quickly, but if it works, it’ll be worth it.

Daily Life and Adaptations for Alina Gonzales

Bill Gasiamis 17:00
Yeah, absolutely. I think hyperbaric oxygen therapy is just good overall for people who can experience it and can go into the chamber, I think it’s good overall. I’m not, it can be overused in the wrong way of course, there’s definitely that, but under controlled and monitored versions of hyperbaric oxygen therapy, I feel like there is not that much downside.

Alina Gonzales 17:32
No, I agree with you, there were other patients there that were cancer patient or had plastic surgery, and we’re going for a different therapies for the appearance and getting bigger.

Bill Gasiamis 17:51
You mentioned earlier that you were having something to eat after these sessions, and then coming home, is eating? Okay? Is your throat been impacted in any other negative ways other than the the trach?

Alina Gonzales 18:07
Yeah, it’s very difficult for me on now. I can’t stuff my face like before I get to see any I can’t I have to focus on chewing before I would just have my face and not think about her great year, I refer tongues liquids as well as to have them taken every time. Love coffee, I love coffee, I like to take it every time.

Bill Gasiamis 18:41
And is it just difficult swallowing? Is that that because of that paralyzed part of your throat? Is it swallowing? And that’s the risk there, getting choking?

Alina Gonzales 18:53
Yes.

Bill Gasiamis 18:59
So what so what do you have to focus on? More do you have to focus on when you’re chewing something? Is it like chewing it down to a good size, so that you can swallow it easily? Or do you have to actually pay attention to the actual swallowing part of the process.

Alina Gonzales 19:16
That’s a chewy down to like mush, pretty much, and then focus on time, it’s a much more focusing session, I chew and chew and chew, then fighting, and time as well, now we really have to focus.

Bill Gasiamis 19:41
Yep. Understand, and do you also have another challenge there with regards to your mouth and the way that it works, and also with saliva?

Alina Gonzales 19:54
I do, yes, somebody else mentioned that they think that with stroke patients that the saliva is impacted, the glands are impacting, you all have a lot of saliva, a lot of extra than before.

Bill Gasiamis 20:16
A lot of a lot extra than before.

Alina Gonzales 20:19
Yes, it’s correct. A lot before it’s a tough thing to manage.

Bill Gasiamis 20:27
And does that also then risk choking or anything like that, or is it just the the uncomfortable part or the annoying part, where it then leaves your mouth?

Alina Gonzales 20:40
It’s annoying, because I feel like I drool a lot.

Bill Gasiamis 20:45
And are you drooling? Or do you just think you’re drooling?

Alina Gonzales 20:49
I think it’s a little bit of both, because I feel like my imagination.

Bill Gasiamis 21:03
There’s a little bit of that as well.

Alina Gonzales 21:05
Yeah.

Bill Gasiamis 21:06
That’s alright. Well, that’s and then it just requires you to pay pay attention to that and have a tissue handy and just make sure that it’s all clean.

Alina Gonzales 21:16
Yes.

Bill Gasiamis 21:18
I hear you. So tell me about what’s new like, tell me about you. What have you been up to the last 12 months? I know there’s been a lot of rehab and a lot of recovery, but what else? What else have you been up to?

Alina Gonzales 21:33
I’m just trying to find a solution to all this, I would really like to start working again. I have a new apartment that I was able to purchase, and I can enjoy it the way I want to because of this event.

Bill Gasiamis 21:51
The new apartment?

Alina Gonzales 21:55
Overall, I really just want to walk again on my own and be more independent.

Bill Gasiamis 22:04
Walk on your own. Driving is on the on the to do list of walking is on the do list and be more independent.

Alina Gonzales 22:15
Yes, it’s correct.

Bill Gasiamis 22:16
Yeah, the new apartment that you have, you’re living there on your own.

Alina Gonzales 22:22
No, I’m not allowed to share on my own yet.

Bill Gasiamis 22:27
Doctor’s orders.

Alina Gonzales 22:28
I did with my mother, majority at the time, and then I come down to the apartment.

Coping with Stroke and Future Goals

Bill Gasiamis 22:36
Okay? So doctor’s orders, you’re not allowed to stay alone.

Alina Gonzales 22:41
Correct, yes.

Bill Gasiamis 22:42
What are they concerned about?

Alina Gonzales 22:45
About my mobile, like I can’t do much for myself at this point.

Bill Gasiamis 22:56
So they’re afraid of your falling, getting stuck in a position where you can’t help yourself. Okay, so in the evenings, is that immobility difficult to deal with, handling getting up and being uncomfortable in bed or needing to go get a drink of water? Is that a challenge.

Alina Gonzales 23:21
Having to go to the bathroom in the morning is very careful. I don’t want to make anybody up, but I have to go.

Bill Gasiamis 23:33
You don’t want to wake anybody up, but you have to go.

Alina Gonzales 23:35
But I have to go, and have to go, and it’s very careful.

Bill Gasiamis 23:43
At the beginning of this whole saga for you, there was a lot of challenges that you hadn’t overcome yet. What are the some of the challenges that you’ve worked on and have been able to overcome?

Alina Gonzales 23:54
I think maybe to communicate one thing that’s got a lot better, and my ability to eat food is another thing. I think those are two big things that I was able to overcome, and I’m just looking forward to being able to speak to you again, to tell I’m walking, I’m driving, living my life. I was talking to a friend from high school, and he said ‘What do you want as a one normal life again? That’s it. But you want normal, healthy, good life, that’s it.

Bill Gasiamis 24:41
Yeah, fair enough so your communication is a lot better. Like I said, was your communication difficult at the beginning because of the lack of rehabilitation to that throat area? Was paralyzed, or was it also cognitive? Did you also suffer from aphasia or something else?

Alina Gonzales 25:06
I think I had a little bit of aphasia, but I couldn’t communicate at first at all. I think it was like my inability to speak at all as a combination of aphasia and my paralyzed vocal cord.

Bill Gasiamis 25:33
And now, with time, the aphasia has settled down, that part of your brain seems to be healing and recovering, and the vocal cord, although it’s not perfect, it seems to have also been rehabilitated and working in your favor.

Alina Gonzales 25:49
I think I don’t tell like myself ‘Oh, so it’s really difficult for me.

Bill Gasiamis 25:57
You don’t sound like your old self.

Alina Gonzales 26:01
It’s part of my identity that’s gone, I guess.

Bill Gasiamis 26:08
Your identity has been impacted by that for sure.

Alina Gonzales 26:12
Yeah, yeah.

Bill Gasiamis 26:16
What kind of work were you doing before the stroke?

Alina Gonzales 26:20
I’ve worked in biotechnology. So I was working with newborn babies and premature babies and babies with lung disease. So I was in the hospital in the NICU, and that was very rewarding, I love it, I love my bosses.

Bill Gasiamis 26:45
Do you see when you’re back at work? Do you see yourself transitioning back into that field again or into a different field?

Alina Gonzales 26:52
I hope so, I just want to help patients out in any way that I can.

Bill Gasiamis 26:59
Yeah, your bosses, have you spoken to them in the last couple of years?

Alina Gonzales 27:06
Yes, I have. I spoke to my most recent boss, and he’s very supportive of everything. He’s frustrated with the fact that I go through this, but he’s very supportive.

Bill Gasiamis 27:21
Yeah, he’s also frustrated.

Alina Gonzales 27:25
Yeah, and he kept in touch with my mom while in the hospital, because I don’t know if you remember, but they told my Mom that I was a bad survivor.

Bill Gasiamis 27:42
And what’s it like hearing that, that they thought that you weren’t gonna survive?

Alina Gonzales 27:52
Sometimes I’m like ‘Okay, I’m not. I don’t feel the same way, but before, I’m like ‘If it happens, it happened to everybody. So it’s like, I still have a lot to live for, so that’s part of it. But then, yes, certainly, it’s like it happened to happen.

Bill Gasiamis 28:15
Yeah, you’ve got a lot to live for, but you’ve contemplated your mortality.

Alina Gonzales 28:20
Yeah.

Bill Gasiamis 28:24
Most of us have, I think most people have had a stroke, definitely contemplate their mortality. How old were you when you had the bleed?

Alina Gonzales 28:30
40 years old when I had my stroke, very heavy and health conscious.

Bill Gasiamis 28:40
That’s the thing about AVMs, they’re just born. You’re born with them, they’re just in your head that you don’t know that they’re there, and you don’t know when that happens, it’s a real surprise, the same thing with me. I was 37 when mine bled for the first time, I had brain surgery when I was 40. Did you have to have brain surgery? How did they resolve the bleed?

Alina Gonzales 29:02
That connects from my brain to my heart, I can feel it. It’s up here, whereas in the hospital, they had a shave half of my head down and towards the hover shunt in my head right now, but that’s the only surgery that I had.

Bill Gasiamis 29:29
What does the shunt do? Are you able to explain it?

Alina Gonzales 29:36
It simply filters some of the excess blood out of my brain, out to my heart.

Bill Gasiamis 29:46
It filters the excess blood.

Alina Gonzales 29:49
Correct, yes.

Bill Gasiamis 29:52
Why is there excess blood in there?

Alina Gonzales 29:56
From the extra fluid and extra blood.

Bill Gasiamis 30:04
So it’s related to the AVM, this additional fluid or blood that’s in there, and is it that there’s no way out for it, and you need the shunt to sort of cycle that out?

Alina Gonzales 30:19
Actually, I’m not sure about that.

Bill Gasiamis 30:22
Okay, I hear a lot of people have shunts in them, I don’t specifically understand what they do. That’s why I was asking, maybe somebody who is listening or watching can leave a comment in the YouTube video and let me know what perhaps the shunt is doing. What have you? Have you done any type of rehabilitation or other therapies that have really been useful and helpful, that you’ve enjoyed, other than hyperbaric?

Alina Gonzales 30:53
I’ve worked with a physical therapist virtually, his name is Daniel West, and he was very challenging. He helped me with different exercises. He’s a physical therapist by trade, but he’s very motivational, and very strict.

Bill Gasiamis 31:17
Strict? How?

Alina Gonzales 31:21
I feel like I do the exercise, I feel like right now I’d like my physical therapist very much.

Bill Gasiamis 31:39
So although he was strict, you felt like it was supporting and helping you with your rehab, whereas now you feel like your physical therapist is a little less strict.

Alina Gonzales 31:53
I guess, yeah, in a way, because I feel like you really was focused on my recovery and walking and getting better, and this physical therapist just smiled and said ‘Okay, we’re gonna do this today. She has her plan, and she always sticks to it, not listening to what I say at all.

Bill Gasiamis 32:21
Doesn’t take you into consideration?

Alina Gonzales 32:24
No.

Bill Gasiamis 32:31
So your mom does a lot for you. What are some of the things that she helps you with?

Alina Gonzales 32:36
She helped me walk, there’s a primary thing. So she helps me to go the bathroom, and she cooks for me and pushes my wheelchair everywhere I go, everything.

Bill Gasiamis 32:54
She does everything, with your balance and your vestibular issues. Is there anyone that you’ve been able to see about that? About the vestibular recovery?

Alina Gonzales 33:08
Doing some research? I think that the most important thing I can do, I’m doing some research, trying to find something that may be able to help.

Bill Gasiamis 33:20
Have you by any chance, listen to my interview with Cheryl Shiltz, episode 200?

Alina Gonzales 33:28
No, why?

Bill Gasiamis 33:30
Because Cheryl is not a stroke survivor, but she had damage to her vestibular system that was caused by medication, and she had her vestibular system completely gone.

Bill Gasiamis 33:43
It was totally gone, and she bumped into by chance at the university that she was attending, the researchers who were working on retraining, believe it or not, the tongue to take over the job of the damaged vestibular system, and she had no balance and she had no no ability to she had dizziness and vertigo, and she had no ability to walk, and they were able to retrain her tongue to take over the job of the vestibular system, using Neuroplasticity.

Alina Gonzales 34:28
Episode 200?

Bill Gasiamis 34:29
Episode 200, yeah.

Alina Gonzales 34:30
Okay, yeah, thank you for that.

Alina Gonzales – Final Thoughts and Encouragement

Bill Gasiamis 34:33
Yeah, Cheryl continues to advocate in this space. She’s an amazing person, and our interview is called Neuroplasticity and sensory substitution, and some of the work that she was involved in was groundbreaking research, and the original work, the rehabilitation that she received, the work for that and the research for that. Started in the 1970s and in the 1980s and by the time Cheryl got to experience that particular rehab, she was the first patient that it was tried on.

Bill Gasiamis 35:15
And now there’s a whole bunch of research that’s come after that. So she would be, I think, more than happy to chat to you, and also the interview is definitely worth listening to.

Alina Gonzales 35:28
What’s her last name again?

Bill Gasiamis 35:32
Cheryl Shiltz, S, H, I, L, T, Z. For anyone listening and watching on YouTube, there’ll be links in the show notes to that episode, but for for you, I’ll send you the link, and then you can watch my interview with Cheryl on YouTube. She’s just had a remarkable outcome because of that particular rehabilitation technique.

Alina Gonzales 36:03
What medication was she had?

Bill Gasiamis 36:07
She had an infection after a surgery, I believe, and they put her on antibiotics. And this particular antibiotics, one of the side effects for some people, very rare side effect is to to cause damage, I’m not sure, directly to the vestibular system, but to impact people in a negative way, in some, some way. And it did for Cheryl, so she was really stuck in this really difficult place of not having any balance after this infection was treated, and then she was able to get that back, they were able to rehabilitate that.

Alina Gonzales 36:55
Do you know how much money for rehabilitation process?

Bill Gasiamis 37:01
I don’t know exactly. It took a while, though, because it was all experimental, so I’m not sure exactly of the process, but you’ll get more more insights when you listen to the episode, and then, if you feel like it, you could reach out to Cheryl. Her contact details are available on the on the links, so you’ll be able to you’ll be able to find her.

Alina Gonzales 37:27
I’m very grateful. Thank you so much.

Bill Gasiamis 37:30
You’re welcome, no trouble at all. I wonder if you might share with us what you feel is the hardest thing about stroke for you?

Alina Gonzales 37:41
I think the hard thing for me, my lack of independence, our future, working and making my own money, and coming and going as I preach and socializing and doing everything that I want, traveling food and drinking whatever one so it’s very difficult now, everything is different.

Bill Gasiamis 38:12
The lack of independence and the way that things have to be done differently.

Alina Gonzales 38:18
Yes, unfortunately, the typical child, for me.

Bill Gasiamis 38:28
Yeah, what would you say that stroke has taught you?

Alina Gonzales 38:34
Well, I think stroke has taught me to be patient and appreciate what you have. I think that’s one point to be patient and appreciate everything that you have.

Bill Gasiamis 38:54
Were you not so patient previously, or was it just something that wasn’t in your awareness?

Alina Gonzales 39:02
I guess, but then like patient the way I am now, with my recovery and my interaction with other people.

Bill Gasiamis 39:16
You have to be patient with them and yourself, because I imagine other people who have never met you before would make assumptions, and they’d be ignorant about what your situation is.

Alina Gonzales 39:33
Yeah, it’s unfortunate, but I think people are overall very ignorant about close survivors, they think ‘Oh, you’re too young to have had a stroke. So it’s very difficult, because most people think I’m just full of it.

Bill Gasiamis 39:57
Even though you’ve told them you’ve had a stroke and you clearly have their deficites. They think it’s not true, or?

Alina Gonzales 40:06
I think, they think that I’m just like ‘I don’t know what I’m talking about.

Bill Gasiamis 40:12
They don’t know what you’re talking about.

Alina Gonzales 40:13
They just don’t understand it.

Bill Gasiamis 40:15
I think they don’t understand it, more than anything. And also, maybe, perhaps Alina, they don’t want to understand it, because then what will happen is maybe they have to think about themselves in a difficult situation like then they can’t imagine it.

Alina Gonzales 40:37
That’s very true.

Bill Gasiamis 40:39
Patience with other people, patience with yourself as well.

Alina Gonzales 40:43
Yeah, because, like I said, we first started talking, I thought my recovery was just maybe a couple of weeks. Obviously, it’s one thing as the other.

Bill Gasiamis 40:57
Yeah, the type of patience you’re talking about is not the kind of patience that you would have had to practice before stroke. I mean, you have to be patient for certain things, but this is different, isn’t it? This is a lot more deeper level of patience.

Alina Gonzales 41:14
It’s very different, because you have to have clear understanding of what you want to accomplish and be more realistic about the time that it takes to get there.

Bill Gasiamis 41:28
Yeah, frustrating as well.

Alina Gonzales 41:33
Yeah.

Bill Gasiamis 41:34
What do you want to tell other people who are listening to our interview here?

Alina Gonzales 41:41
I know that it’s very difficult, but not to give up and to keep fun every day because there’s divorce at the end, say it goes in glasses and keep fighting. Don’t give up, never give up. I think that’s amazing.

Bill Gasiamis 42:01
Yeah, never give up, keep fighting, go after your goals.

Alina Gonzales 42:10
Yeah for sure.

Bill Gasiamis 42:12
Yeah, with the with the time that’s passed. Now, do you how do you set your goals? Do you set them? Day at a Time, month at a time, years ahead, like, how do you set them?

Alina Gonzales 42:29
My thing, I’ve had to adjust them because, like I said, I have to be more realistic about how long recovery takes and the things take longer for you to get better, to recover, so I I set goals ahead month and month ahead of time.

Bill Gasiamis 42:53
Yeah, is it physically and you’re is it physically and neurologically challenging to talk for an amount of the amount of time that we’ve been talking now.

Alina Gonzales 43:06
No, I’m okay.

Closing Remarks and Resources

Bill Gasiamis 43:07
Okay, so you’ve overcome that part of the, well, some people struggle with the concentration and the focus and the talking.

Alina Gonzales 43:19
Yeah, very lucky, I’m lucky and lovely.

Bill Gasiamis 43:24
Fatigue?

Alina Gonzales 43:26
No, I’m okay.

Bill Gasiamis 43:29
Fatigue is not an issue?

Alina Gonzales 43:30
No pain, no fatigue. And I’m able to use both arms and hands, and I just have one more time to hand me to work on my walk, and that’s the main thing I’m focusing on now.

Bill Gasiamis 43:53
They’re good things, they are all good things. So the blessings, I suppose, I mean the fact that you’re not dealing with fatigue on top of everything else, that’s awesome.

Alina Gonzales 44:09
I know that there are people that deal with a lot of pain and fatigue, and it’s very challenging, so I’m very lucky.

Bill Gasiamis 44:22
Do you? As a result of what happened to you, have the doctors prescribed any medication?

Alina Gonzales 44:28
No, no medication right now, thankfully.

Alina Gonzales 44:31
None at all?

Alina Gonzales 44:34
None at all.

Bill Gasiamis 44:38
Yeah, that’s excellent. So that means that you’re generally in good health.

Alina Gonzales 44:45
Yeah, I just have to get better again.

Bill Gasiamis 44:49
Get better again.

Alina Gonzales 44:51
Yeah, for sure.

Bill Gasiamis 44:53
Yeah, that is good. That’s one of the things that I also didn’t have to deal with was any medication, and even though I’ve got a couple of little deficits and balance issues and all the things that I have, it’s it’s really good that I don’t have those other underlying causes like some people, which is high blood pressure, while the issues that are related to a bleed that some people experience.

Alina Gonzales 45:22
That’s true, yeah, I think also recognizing where we are fortunate, in love with human takes for the health that we do have, yeah, I think they had to express some gratitude throughout challenge. Otherwise, you just say assignment, you won’t progress.

Bill Gasiamis 45:53
Have you had any challenges with depression or anything like that? Have they those things popped up for you?

Alina Gonzales 46:02
For sure, yeah, I think it goes like of all the culture, some days are good, some days are awful. Yeah, it’s very, very well done, very difficult.

Bill Gasiamis 46:18
When it’s awful, how do you how do you come out of it? You just have to wait it through. Do you have to wheel yourself out of it?

Alina Gonzales 46:29
Keep pushing, pushing through and find a way out, and not giving up with it like before.

Bill Gasiamis 46:42
And not giving up, even though it’s bad at the time.

Alina Gonzales 46:45
Yeah.

Bill Gasiamis 46:49
What about any other issues, like anxiety does? Has that ever been something that’s turned up in your life?

Alina Gonzales 46:57
No, not really, I’m very lucky.

Bill Gasiamis 47:05
I love your attitude, I love the fact that you are like properly aware of the things to be grateful for, probably aware of how good your health is, even though you’re dealing with the deficits that stroke has left you, and that you’re aware that it sounds like you’re aware that it could have been worse.

Alina Gonzales 47:26
Yeah, I know a lot of people that have different issues that I don’t have so very aware of the way the thing could be. So I know I’ve run that a very difficult time with fatigue. Another friend that has really tough time with me, very difficult time with drivers as well.

Bill Gasiamis 47:56
Are they all stroke survivors?

Alina Gonzales 47:58
Yeah.

Bill Gasiamis 48:00
It’s amazing how many stroke survivors we know these days. All of a sudden, we end up finding a whole bunch of extra.

Alina Gonzales 48:12
Yeah.

Bill Gasiamis 48:14
Yeah, are these people that you see one on one locally or again? Are they online?

Alina Gonzales 48:19
All online, yeah.

Bill Gasiamis 48:21
All online?

Alina Gonzales 48:22
Yeah, all online.

Bill Gasiamis 48:27
How do you guys support each other? What is it? How does it help you to get together and have these conversation?

Alina Gonzales 48:33
I think when you talk to other people and talk about your experiences or your thoughts and feelings, then you realize you’re not alone at all. Yeah, talking to other people to be beneficial overall.

Bill Gasiamis 48:59
Is it understanding, isn’t there, there’s a deeper understanding.

Alina Gonzales 49:04
Great good.

Bill Gasiamis 49:11
Under that’s I find it difficult to have those conversations with people who don’t, well, thankfully, haven’t been there as well, that they haven’t had a stroke, so that they don’t understand. They used to frustrate me, but like, I understand now why they don’t understand it’s because they haven’t been there, and we don’t want them to go there, and it’s really good to find other people who you can have a conversation with, and then they can I don’t know it makes you feel at ease, I suppose.

Alina Gonzales 49:45
Yeah, for sure.

Bill Gasiamis 49:47
Yeah, Alina, I really appreciate you reaching out to join me on the podcast again, it is actually really heartwarming to see how far you’ve come in the last 12 months, and I’m looking forward to chatting to you again in the next 12 months, so that again I can see how, how much further you’ve progressed.

Alina Gonzales 50:13
Yeah, I hope so. I hope to give you a call or send you a message ‘Hey, I’m walking and tell you about that. I’ll send you a video.

Bill Gasiamis 50:25
I’m going to be very keen to receive a video like that, and like you said, I think it’s a word there were the goals of keeping in your focus and going after, and I love that you also make it about other people that you’re keen to share so that other people can get better and improve.

Alina Gonzales 50:50
If you could can come here, or everything else, come reach out to me, feel free. They can always reach out to me.

Bill Gasiamis 51:02
We’ll have the links to your socials in the show notes so that people can go to recoveryafterstroke.com/episode, and download that stuff and just thanks once again, I’m going to send you that link to that interview with Cheryl Shiltz and maybe a couple of others that I think will be beneficial for you to to listen to or to watch and yeah, just thank you so much. I really appreciate it.

Alina Gonzales 51:31
Thank you so much. Good to see you and talk to you.

Bill Gasiamis 51:36
That’s a wrap for Episode 328 I hope you found Alina’s story as inspiring as I did. If you enjoyed this episode, please consider supporting the podcast by subscribing to our Patreon page at patreon.com/recoveryafterstroke. Your support helps us keep bringing you these valuable stories and ensures that the podcast remains accessible to all stroke survivors. Remember to check out the show notes at recoveryafterstroke.com/episodes for links to Alina’s social media, full interview transcripts and more.

Bill Gasiamis 52:11
If you haven’t already left a review, please consider leaving a five star review on iTunes and Spotify and do please give a thumbs up on YouTube and leave a comment in the comments section beneath the video. I respond to all my comments personally. Thank you so much for being here, and I’ll see you in the next episode.

Intro 52:34
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 53:04
The content is intended to complement your medical treatment and support healing, it is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 53:28
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 53:55
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Resilience in Recovery: Alina Gonzales’s Stroke Rehabilitation Journey appeared first on Recovery After Stroke.

Alcohol and Stroke: Understanding the Risks and the Road to Recovery

Alcohol consumption is woven into social customs around the world, but it comes with potential health risks that can significantly impact one’s well-being. Among these, the connection between excessive alcohol use and stroke is one of the most crucial yet often overlooked. Whether you are evaluating your current drinking habits or seeking guidance after a stroke, understanding the relationship between alcohol and stroke, as well as the possibilities when one chooses to give up alcohol, is essential.

The Link Between Alcohol and Stroke

High alcohol consumption is a well-documented risk factor for stroke. Excessive drinking can lead to high blood pressure, an irregular heartbeat (such as atrial fibrillation), and other cardiovascular issues—all of which increase the likelihood of stroke. Chronic alcohol use can weaken blood vessels and impair the body’s ability to regulate blood pressure effectively, setting the stage for potential hemorrhagic or ischemic strokes.

The Turning Point: Giving Up Alcohol

Choosing to quit alcohol—whether before or after a stroke—can be transformative. For those at risk, reducing or eliminating alcohol can help lower blood pressure, improve cardiovascular health, and decrease the chance of stroke. For stroke survivors, quitting alcohol can play a significant role in recovery and long-term rehabilitation. It can enhance the body’s ability to heal, support brain health, and improve overall physical and emotional well-being.

The positive impact of quitting alcohol extends beyond just physical health. Alcohol dependency often masks or exacerbates emotional struggles, such as stress and anxiety, which can hinder recovery. By quitting, individuals may find themselves better equipped to manage their emotional state, make healthier lifestyle choices, and cultivate the resilience needed for recovery.

What Changes After Quitting Alcohol?

1. Improved Brain Function and Cognitive Recovery: Post-stroke recovery often focuses on regaining cognitive and motor functions. Alcohol, known to impair cognitive abilities, can delay this process. When individuals stop drinking, they may experience improved focus, better memory retention, and enhanced overall brain function, supporting faster and more effective rehabilitation.
2. Enhanced Physical Health: Stopping alcohol consumption helps the body regain balance. This includes better liver function, improved sleep quality, and more stable blood sugar levels—all of which contribute to overall energy and resilience. Increased energy can translate to more productive physical therapy sessions and a quicker return to daily activities.
3. Emotional Stability and Mental Health: Alcohol is often used as a coping mechanism but can lead to greater anxiety and depression, especially in stroke survivors facing significant life changes. Quitting alcohol can foster more stable emotions, help build mental resilience, and support a positive outlook—critical components of successful recovery.
4. Better Lifestyle Choices: Many stroke survivors find that quitting alcohol opens the door to other beneficial lifestyle changes. This can include adopting a healthier diet, engaging in regular exercise, and participating in activities that support mental and physical health, such as meditation or mindfulness practices. Together, these changes can reinforce the body’s healing processes and build a stronger foundation for long-term recovery.

Steps to Take When Quitting Alcohol

For those considering giving up alcohol as part of stroke prevention or recovery, it’s important to approach this transition mindfully:

• Seek Support: Whether from family, friends, or professional resources, having a strong support system can make the process more manageable.
• Develop New Coping Strategies: Replace drinking habits with healthier alternatives, such as exercise, hobbies, or support groups.
• Consult Healthcare Professionals: Speak with doctors or therapists who specialize in addiction and recovery to ensure you’re getting the guidance needed for a safe and effective transition.

A Path Forward

While quitting alcohol may seem daunting, the benefits—especially in the context of stroke prevention and recovery—are substantial. Stroke survivors who take this step often report improvements in energy, emotional stability, and the ability to engage more fully in their rehabilitation journeys. Ultimately, prioritizing sobriety and healthier lifestyle choices can create a ripple effect, fostering resilience and paving the way for a richer, more fulfilling life after a stroke.

Whether you’re considering quitting alcohol to lower your risk or to support your post-stroke recovery, the path forward is filled with potential. Each day without alcohol is a step toward better health, resilience, and a stronger future.

Alcohol and Stroke: Will Schmierer’s Inspiring Recovery Journey

Discover Will Schmierer’s journey from alcohol and stroke to resilience. An inspiring story of recovery, motivation, and lifestyle transformation.

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Highlights:

00:00 Will Schmierer’s Introduction and Background
01:37 The Impact of Weight and Alcohol on Health
10:38 The Role of Mindset and Self-Discovery in Recovery
21:27 The Challenges of Managing Multiple Health Conditions
33:51 The Importance of Diet and Exercise in Recovery
54:58 The Role of Podcasting in Sharing Recovery Stories
1:09:26 The Impact of Breathing Exercises on Recovery
1:16:21 The Importance of Self-Care and Balance
1:26:47 The Role of Community and Support in Recovery
1:29:11 Final Reflections and Future Goals

Transcript:

Introduction – Alcohol and Stroke

Bill Gasiamis 0:00
I use stroke survivor with a story to share, now’s the perfect time to join me on the show. The interviews are unscripted, and you don’t require any planning, just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show, just visit recoveryafterstroke.com/contact, fill out the form and I’ll get back to you with details on how we can connect via zoom.

Bill Gasiamis 0:31
Welcome to episode 327, of the recovery after stroke Podcast. Today, I have the privilege of sharing an extraordinary story of resilience, transformation and post traumatic growth with you. My guest Will Schmierer is not only a stroke survivor, but someone who has overcome monumental challenges, including battling alcoholism and facing a diagnosis of Multiple Sclerosis.

Bill Gasiamis 0:57
Will’s journey is one of relentless determination major lifestyle changes and the pursuit of recovery, embodying the essence of post traumatic growth in this episode, will talks openly about how his life changed after a devastating ischemic stroke at the age of 37 the choices that led to the pivotal moment and how he navigated the difficult path to sobriety and rehabilitation, from weighing over 530 pounds to becoming an active runner and embracing a healthier lifestyle will story demonstrates the recovery and personal growth can emerge from even the most difficult experiences.

The Impact of Weight and Alcohol on Health

Bill Gasiamis 1:37
His journey highlights how mindset discipline and self discovery are essential to overcoming life’s greatest challenges. Before we dive into Will’s inspiring journey, I want to take a moment to thank all of you who have supported the podcast, your comments, stories and feedback helped build a community that uplifts and empowers others on their recovery paths.

Bill Gasiamis 2:01
A special shout out to everyone who has left the five star review on Spotify on iTunes, your support helps others discover this valuable content, if you haven’t already, please consider leaving a review or a comment on the YouTube channel.

Bill Gasiamis 2:18
Will Schmierer, welcome to the podcast.

Will Schmierer 2:21
Thanks for having me Bill.

Bill Gasiamis 2:23
Tell me a little bit about what happened to you.

Will Schmierer 2:26
Yeah, so it’s kind of a long story, but to give a summary, December 2019, I wound up going into the hospital. Wasn’t feeling well, had been I had moved that year from Virginia back to Florida with my family here, coming back to Florida, got settled in, moved into our new, brand new house back in September of 2019, wasn’t really feeling well. Was a really big guy at that time, was about 530 pounds, give or take, depending on what scale, what day. You know when you’re that big, it depends on what hour you’re weighing yourself.

Will Schmierer 3:03
But, yeah, wasn’t feeling well once at the doctor’s middle of December 2019, the first time I went, they sent me back home, gave me, I don’t even think they gave me anything, to be honest, they just kind of said ‘No, you’re okay. And then wasn’t feeling well. A week later, went to not a hospital, but I went to an urgent care here. Woman there is like ‘Your heart is going to explode, your blood pressure is through the roof. I mean, it was a resting heart rate of like 90 plus, which is not good.

Will Schmierer 3:37
When I’m going back to the hospital, they put a bunch of monitors up to me, hooked me up with all sorts of things. Luckily, they figured out I had afib, so at that point they admitted me to the hospital about a couple days before Christmas that year, and I mean, I was supposed to get my heart shocked back into rhythm, I think it was Monday, December 23 I might be off with these dates by a day or two, but it was like two days before Christmas, and I thought ‘Okay, cool, we’ll shock my heart back into the rhythm.

Will Schmierer 4:11
I’ll get well, I’ll get in shape, and we’ll figure this out, and somewhere between the time they admitted me, which was that Saturday prior, somewhere in that Sunday, I must have had a stroke in my sleep at the hospital, or at least that’s what I think, or can remember. But my family had gone out for the day, kind of just to get out of the hospital and get some lunch and yeah. So it’s really weird, because you could imagine, I’m six foot eight, and at that point I was 530 pounds, managed to somehow get out of the bed, go to the restroom, use the restroom.

Will Schmierer 4:52
I knew something was wrong, but I just kind of thought my legs were asleep, because I never really like lay down or sit down in the hospital, you know that position that long? Long story short, they missed the diagnosis, they thought pinched nerve they’re like ‘Oh, you’re too you know, it’s not a stroke. My wife, who is deaf, was like ‘No, I think you had a stroke. And I just was like ‘No, there’s no way. And even the doctors and the like, the staff there, again, this was right before the holidays, so like, you know, it was probably people covering, people not really aware of the signs, I guess.

Will Schmierer 5:26
And unfortunately for me, went into surgery that morning, and they did, in fact, confirm that I had had a stroke that previous day, and I was already, at that point, I was a little bit, you know, can’t do much after, after a certain amount of hours, of course, later, I learned about TPA and signs of stroke, probably should have known the signs stroke, but, you know, if I didn’t know them, the doctors should have known the main I know they were thinking.

Bill Gasiamis 5:56
They should have known them. But also, you’re at that weight, 530 pounds, which is 240 kilograms. You are the perfect candidate for a stroke like it’s should have been a massive Red Flag.

Will Schmierer 6:18
I mean, to be honest, though, yeah, a little strange, but again, I was in bed, so they probably weren’t calculating six foot eight, you know, and I’m at six foot eight, 530 pounds. It’s still 530 pounds, but I don’t think, honestly, anybody in my life really realized how big that was. I mean, I was just a big kind of like, literally, I filled the doorway, anywhere we went, and that was kind of the way it was, because I grew up, like I was always a bigger guy.

Will Schmierer 6:48
I always played sports, you know, if we had rugby here in the States, I would have played rugby, probably, but I played a lot of football and then just kind of gained weight over the years in my 30s, and like, it’s just gradually got put on, and I was always wearing good clothes anyway. So I think, to my detriment, I was kind of hiding it from myself, but really people just didn’t know how big I had gotten.

Bill Gasiamis 7:12
Yeah, you kind of might be able to hide it a little bit, I imagine, just because of your height, when I look at that photo that you’ve posted on your Instagram, survivor science, yeah, and it’s you how it started, 2019 on the left, and how it’s going 2024 it’s going great, by the way.

Will Schmierer 7:33
Thank you.

Bill Gasiamis 7:34
But you can see that just in your face, just by sitting down the chin, the chin is huge. In the chin, there’d be just an amount of weight there that would almost, sort of add another two or three kilos just there.

Will Schmierer 7:52
Yeah, and then there’s the beard that was covering things, and I wear hoodies, and I was wearing like, big shorts, because, you know, I used to play basketball, so I was kind of in the 90s basketball always wearing big shorts that are way too big.

Bill Gasiamis 8:05
Was that a strategy to hide it?

Will Schmierer 8:09
No, not intentionally, I mean, I’ve always been like a guy that wears basketball shirts and oddies and basketball shoes like, that’s just how I grew up in the 90s. So it’s like, it wasn’t really intentional, it was just kind of my style. And the other problem is, you know, I talk about this a lot, but I used to be a former alcoholic, and I don’t want to glorify being an alcoholic, but, like, I really hid that, even for myself, to it to my drug detriment, and my wife knew I was drinking a lot, and I was always big drinker back my 20s and into my 30s, and I just like, I held down my job.

Will Schmierer 8:48
Like, I wasn’t like, so I was an alcoholic, let’s be clear, but I wasn’t like, I guess the term for lack of a better one is,functional alcoholics. So like, I would do all my duties, I would work, get up, do things, you know, and then the hours of, like, 9 to 12, I would just pound beers, and you can imagine Bill at six, eight and 530 pounds, that starts to add on the weight.

Will Schmierer 9:15
And it also, it wasn’t like one or two it, you know, it started probably in my 20s as like a six pack, and then it probably get a little more because I went to school at Miami, so I was just a big partier, kind of, not even like, I just never thought about it, and I just kept going and going, and, yeah, I mean, even now, I drink like, two gallons of water a day just because I’m a big dude.

Bill Gasiamis 9:41
Just require more than other another person standard, which you kind of let that kind of go to, well, I’m bigger guy. I’ve got to drink more, and then that, though, more alcohol is not necessarily achieving anything other than getting you more calories, more calories and more plastered, perhaps more disassociated, all sorts of things.

Bill Gasiamis 10:07
Let’s pause here for a moment. If you’re finding inspiration and valuable insights into Will’s story, I encourage you to check out my book ‘The unexpected way that a stroke became the best thing that happened. It’s a deep dive into Post Traumatic Growth, packed with practical advice and real stories from stroke survivors who turned their hardships into powerful opportunities for transformation. You can find it on Amazon or at recoveryafterstroke.com/book.

The Role of Mindset and Self-Discovery in Alcohol and Stroke Recovery

Will Schmierer 10:38
Yeah, I mean, probably was a lot of stress. It was, there’s a lot more to the backstory, but yeah, as you know, I had kids in my 30s, I already had a daughter with my wife from her previous marriage, you know, my daughter. I adopted my daughter, and then we had two more kids. And just stress of being a developer in agency, life is very stressful, I let it get to me, and I didn’t have coping mechanism, and the drinking just probably, like a lot of alcohol, because it just becomes natural.

Will Schmierer 11:06
It’s funny now, I don’t drink, I don’t smoke, I don’t do any of that stuff, and it’s like, I don’t even miss it, it’s I hate it, like, I met Linda, I’m literally now that guy that like, if I smell cigarette smoke, I don’t mind if people drink, but I’m just like ‘Why would you waste the calories? Like, but yeah, and because I was so big, it didn’t really affect me the same way.

Will Schmierer 11:29
Like I could drink a 12 pack and not even blink, and like, you wouldn’t even be able to tell I drank a 12 pack, whereas most people would drink a 12 pack and they’d probably be dead. Again, not to glorify it, but it’s kind of how it happened.

Bill Gasiamis 11:43
I hear you, it’s not glorifying at all, it’s just giving an insight into what it looks like for a bigger guy to go down that path. You know, if somebody who is my height, you know, which is just under six foot and about, 80 kilos, which is like a third of your your heaviest, then you, you would have been able to kind of see it more dramatically. So would you say that drinking was also a part of dealing with stuff that was kind of helping that and sort of numb it? Or keep it at bay or not deal with it?

Will Schmierer 12:32
Yeah, I think it was a bit of both, I think it was I can handle stress, and even now, obviously I maintain a different level of stress, but I think combination of kind of that kid from Jersey on the East Coast, like, I’m a very east coast USA guy, like, if you’ve ever met other people from around the US, that’s very different on the East Coast than other time zones in the States, and so a mix of Jersey, New York, Miami, you know, part of the lifestyle just kind of never gave it a thought, and it was a way to it’s a culture, and it’s part of it was.

Will Schmierer 13:09
I mean, I guess it was definitely a coping mechanism, but I just thought it was under control too, because it was like ‘Okay, well, I’ll drink from like 9pm after the kids go down to midnight. But that already rips into your sleep, I mean, there’s a lot of factors, I had a lot of things, and still have some things that I, unfortunately, won’t be able to shake.

Will Schmierer 13:31
But, that out of all combination Perfect Storm, everything that could go wrong could go wrong. That’s, you know, to have an ischemic stroke at 37 you have to do, I mean, again, it could happen to anybody at any time, at any age, in any shape, but, you know, to have an ischemic stroke, really, you have to do a significant amount of work and damage to your body to really put that much level of, that bigger stress level on it.

Bill Gasiamis 13:58
You put a lot of effort in for sure.

Will Schmierer 14:00
Yeah, a lot of effort into the wrong things, really.

Bill Gasiamis 14:04
What people don’t realize, a lot of people don’t realize that when, when somebody’s overweight, in fact, they’re doing all the things that somebody would do who’s not overweight, they’re doing the same repetitive tasks all the time, and the tasks that the person who’s overweight has chosen are just make are the ones that make you gain weight, and the task the person who’s not overweight has chosen are the ones that make you not gain weight.

Bill Gasiamis 14:31
It’s the same amount of effort and energy, and some of it might be unconscious, some of it is conscious, but a lot of it is just where you put your time, and if you put your time in a different place, you get a different outcome. Now, I know it’s not that simple, right, but right. Let’s just take it up a little bit to a high level discussion so that we can kind of just talk about all it is, is what you focus on, is what you get, what you repeat is what you get.

Will Schmierer 15:01
Yeah for sure, I mean, and you know, what’s amazing too, is that I I’m a guy that likes to have hobbies, I’m curious, I’m constantly curious. Like, I mean, maybe that was part of it, really the the alcohol was really the only way I was able to cope in my 30s, to shut my brain down in order to go to sleep, because I didn’t have the right tools, the right mechanisms like you said, I mean, I’ve refocused that energy into my recovery, into running now, which is amazing considering, not only did I have a stroke, I think I diagnosed with MS, no family history.

Will Schmierer 15:36
Like, nothing, it just MS out of the blue, and you know, if I had put my health first, the way I’m putting it now, I wouldn’t be in this spot, and for better or worse I think I’m able to handle it, but I certainly would be loving, you know, I’d be remiss to say I not having a stroke certainly would make things a lot easier. It’s like, I like doing difficult things, which is great, but that’s why, like ‘Could I make it a little less difficult? I told the MS, but I could have certainly done some things to really not have the stroke, for sure.

Bill Gasiamis 16:14
What I like about this situation is the massive change, obviously, but also the fact that what happened to you didn’t kill you. Because let’s face it, people at your weight at that time often have a stroke or a heart attack, and that’s it.

Will Schmierer 16:29
That’s it, yeah, that was a real eye burner, honestly. I mean, I know it sounds corny when people say it, but I am lucky to be alive, and I think I channeled that in in the right way. I’m lucky to be able to do that, some people aren’t. It’s a lot of work, and it’s a fun challenge, I guess, given the circumstances and the fact that there’s no magic pill for curing stroke, but yeah, just, I’m kind of grateful for it.

Will Schmierer 16:58
Actually, because I kind of get so I always talk about second chance at life, because it’s really like ‘Okay, well, you know, not ideal, but now I get this opportunity to really, like, kind of a do over, you know, it’s again, not the path I would have chosen, not the path I enjoyed, necessarily, but it’s, you know, gotta make the best of it.

Bill Gasiamis 17:18
So as you reflect back, right, because that before and after photo, that’s a great thing to remind yourself about where you were and how far you’ve come. Do you look back and how do you reflect on that and all the things that you’ve achieved? What’s the internal conversation like about that now?

Will Schmierer 17:41
Well, the internal conversation is always dynamic and eventful, I mean, it’s easy to see and say now, and I know I’m going to keep growing and getting better, It’s very motivating. It wasn’t easy in the beginning, it’s not right, it’s hard, you’re just figuring out what to do, how to do it, how much help you need, how to push yourself.

Will Schmierer 18:05
But I think, you know, coming up on the five year anniversary, now it’s like, alright, the work that I’ve been putting in, even though it’s small, changes each and every day, and it’s hard to really see that it’s, apparent that I put in the work. Again, I would rather had an easier path to that I would rather corrected it before the mistake.

Will Schmierer 18:25
Even, you know, mistakes probably not the right word, but you know, rather than not having the stroke and not be, you know, paralyzed half my body, although I will say, I have kids, and I was not opposed to the rehab inpatient here in the States, because it was like, alright, well, I guess this is a vacation. But you know, I do try to look at the positive side of things, and sure, that was stressful and tax on my wife and attacks on my family, but all in all, I think that’s part of it too is that I’m self motivated.

Will Schmierer 18:59
But the fact that I have three kids and a wife, that just fuels the motivation and so many people, I’m sure, like yourself, kind of brushed me aside after my stroke, and I’m not a vindictive person, but like if you brush me aside, you know that East Coast New York guy comes out swinging, you don’t want 628 swinging, trust me, it’s not going to end well.

Will Schmierer 19:28
The MS is interesting, because I, again, I had that stroke in December 2019, so I was in the kind of the regular hospital during the holidays, because they didn’t want to transfer me into the new year, over to the rehab facility here in Jacksonville, Florida. And I learned a lot there in the the early days, but then the MS, really kind of was not only surprising, but it it then affected the so I came out of inpatient rehab at the end of January 2020. Was home for about a week, watched the Super Bowl, woke up the next morning talking funny, which was strange.

Will Schmierer 20:09
Because I hadn’t been talking funny for my original stroke, I mean, I had some speech issues, but not like major in the beginning, and then went back to the hospital, same place that I had this stroke because it didn’t know where else to go, because we were so new to this area at the time, and it’s fine. They ran, they made sure I didn’t have a second stroke this this time, they made sure, and after a bunch of tests, it could have been cancer, they thought maybe it was brain cancer, then thought it was a brain tumor.

Will Schmierer 20:09
And I know you’ve had kind of a similar experience, a lot of different things with doctors. But thankfully, after the Spinal Tap, they were able to tone in on what it was and it was MS, and it messed up the entire left side of my body. So I was a real treat to be around.

Will Schmierer 20:55
And so you’re talking February 2020, both, you know, both sides, one side physically debilitated the right side, and then the left side was thankfully mostly temporary, because I think that was kind of corrected for the in large part, or at least enough, to be functional on the left hand side of my body by the time I came out, right before the pandemic to come back home. So it’s a that’s a interesting twist to add to the journey. Is that, I never know, is it stroke? Is it a mess? Like, yeah.

Bill Gasiamis 21:27
I can relate to that in a way.

Will Schmierer 21:27
Fun is a word.

Alcohol and Stroke: The Challenges of Managing Multiple Health Conditions

Bill Gasiamis 21:27
Fun, fun is a word, yeah. I can relate to that in a way, because I had a thyroid surgery about 18 months, 16 months after my brain surgery, and the fatigue was debilitating from the brain stuff, right? The stuff that happened with the stroke, trying to get out of that fatigue situation was really complicated, and then I had this reoccurrence of the fatigue got really bad at one point, and what it was is thyroid. Had a goiter, which is a large growth on one side of the thyroid, and that was impacting in the way that it was working.

Bill Gasiamis 22:09
And the thyroid gland is one of the main glands that has a massive role to play with the brain and how your brain functions, amongst other things, like, it’s the main gland anyway, but it has a massive impact on the way that your brain works, and it cause when it’s not running well, it causes brain fog and fatigue.

Bill Gasiamis 22:31
And I remember going to doctors after both of them, after the two diagnosis, and sort of going, okay, so what am I deal with, which one are we dealing with? Which is the one that I have to work on? How do I know if it’s brain fog from and fatigue from the thyroid, or is it brain fog and fatigue from the stroke? Give me some guidance. Of course, they’ve got no idea, they know how to say it’s that causing it or it’s this causing it, and then I had thyroid surgery, and they removed half the thyroid.

Bill Gasiamis 23:04
And when they do that, there is a quite a bit of time before the body gets comfortable with the half, the other half of the thyroid gland, sort of stepping up to the plate and doing the job. But in that time, I’ve got to adjust everything, I’ve got to adjust my diet, I’ve got to reduce, I’ve got to completely reduce, gluten, sugar, dairy, all that kind of stuff, because they’re inflammatory and the thyroid overworks.

Bill Gasiamis 23:34
So when you got half a thyroid and you’re chucking in all this stuff, it doesn’t operate as well, and you kind of notice it with weight gain, and you also notice it with energy levels the brain and all that kind of stuff. So I know now, because it’s been such a long time post, and they’ve technically removed that issue from the brain, that the blood vessel that bled that some of my I kind of know that the fatigue that I experienced is around the stroke is the one which is kind of like, my brain’s fried, I can’t get any more computer work done, I can’t send emails, that type of stuff.

Bill Gasiamis 24:15
But then the other fatigue that comes from the thyroid is one where, like, my body’s completely spent where I can’t actually do anything physical, and all I can do is lie down on the couch and just recover and hope to get to bedtime and then have a sleep and that’s about it. It’s a real bizarre experience to navigate the two and with MS on one side and the ischemic stroke that happened on the other side. I can only imagine, I’m still figuring out. Yeah, so does your does your right side feel differently at all because of the MS?

Will Schmierer 25:02
Good question, I think I’m still figuring out the exact thing and feelings constantly because now I think I said this earlier, but now I’m starting to run quite a bit, and have been for the last couple years. So it’s always hard to tell, is it stroke necessarily, is it because I ran a ridiculous amount of miles? I mean, I do anywhere from 10-15, to upwards, almost a marathon some days, depending on the day or how I’m feeling. Because sometimes I’ll just keep going if I feel good, which, of course, always comes back to bite me in the mud, because the next day is brutal.

Will Schmierer 25:39
But kind of similar to you, I kind of work beyond the computer a good amount I do a lot of getting up, and lot more flexibility and getting up, you know, I really try never to be at the desk for more than three hours without getting up, and that probably is. Honestly, it’s probably never more than an hour, hour and a half without getting up and just moving, but it happens.

Will Schmierer 26:10
Same thing, it’s like, I can kind of tell brain fog at the end of the day is definitely stroke MS. Could just be, like, some days, things just, I was saying this to somebody else I was talking to today, where it’s like, just takes me a bit more to get going in the morning, like I go to bed early. Now, I focus on my sleep, I focus on recovery, I used to love working behind the computer all day, then taking breaks and hanging out with my kids in the evenings.

Will Schmierer 26:40
Then I would kind of sit on the couch, or sit on and share and do computer work while watching TV to kind of wind down. But lately, I’ve been finding that, like, I’m just, you know, it’s like, I’d rather just wake up early, I think, and kind of spend an hour to, kind of, it sounds so silly, but just to take a shower in the morning, brush my teeth, do those basic things in the morning. It’s like, I really need good, solid hour, hour and a half most days, you know, but that’s some days, it’s not luxury I have. So, yeah, yeah, it’s a constant struggle.

Will Schmierer 27:15
I’m always working on things, I’m still doing things that is again, to talk about somebody else about this today, kind of recently started breaking out some of the old tools from the early days that, when you have the stroke and you have these events and you buy different tools or therapy things, and it’s like, it’s funny, because I’m about to hit the five year mark here in a couple months, and it’s like, I just broke out the putty to kind of work on my hands.

Will Schmierer 27:41
Because I was like, this is feeling stiff, why is this feeling stiff? And I can’t tell if it’s Jim or the MS, because I think more than I realize, and this is my own fault, kind of like, I’m so focused on the stroke sometimes that I forget that the MS is maybe the thing, and it doesn’t really matter, because it’s like I got both, I got to deal with it. Does it really matter? It’s always interesting, I guess, never a dull moment.

Bill Gasiamis 28:11
Yeah. What’s the path forward with the MS? How do they treat it? What do they do with it?

Will Schmierer 28:16
Yeah, so I’m on a pretty aggressive treatment here. My neurologist, and I definitely decided early on to try to get I was able to get grandfathered into a treatment that a lot of insurances here in the states weren’t covering, I don’t have to do a daily or a weekly thing. it’s a two time a year infusion, it’s at a cancer center. They kind of do it very much like that, and it’s twice a year, and I kind of love it. It’s a nice day off, it doesn’t I mean, it’s cool, because they give you these, the stuff, and you feel great coming out of it, and then, like, the next day, it’s like, you hit a wall again.

Will Schmierer 28:56
But, it’s good, I like that, I know there’s other treatments, it works for me. I think because I can imagine jabbing myself every week or every day, that just seems tiresome. To be honest, I got enough going on, by the time I get warmed up for the day and all that running and all the work that I do, like it works for me. It’s called localist, it’s a pretty I think it works with my type of MS. So there’s obviously many types of ms, but mine’s kind of, it’s called tumor active, which, you know, makes sense, right? Because they thought I had a brain tumor.

Will Schmierer 29:34
They thought I might have brain cancer. Thankfully, honestly, thankfully, it was MS. That’s what I always said, it’s like ‘You know what? And that sounds like the best of those three options. So, you know, again, I wouldn’t wish it upon my worst enemy, especially not in the succession that I had things so quickly. I always say this, it’s like getting hit with a baseball bat in your stomach, having the stroke. I got up, I started doing work, and then somebody’s.

The Importance of Diet and Exercise in Alcohol and Stroke Recovery

Will Schmierer 33:51
While during the pandemic, but I’m a talker, I’m from Jersey, New York, and for me, actually, it was the swallowing thing was a big issue in the beginning, after the MS, because, like ‘Oh well, you can’t eat anything. But, like, they only gave me food through a straw initially, and I was like ‘Well, we’re gonna figure this out because I was still pretty big, and I’m even now, I work out a ton. I do a lot running, but like, you’re not going to stop me from eating, I’m going to swallow it a hole and choke kill myself, or I’m gonna.

Will Schmierer 40:34
Yeah, you got to wrestle that food out of my hand, at least when I want it, because I’ve kind of changed my diet, I kind of unintentionally do a lot of fast things, so I eat kind of irregularly compared to most people.

Bill Gasiamis 40:52
Did the alcohol obviously stopped immediately after all this experience and your eating habits were they also not the best eating habits while you were drinking the amount that you were drinking.

Will Schmierer 41:10
Yes, correct, I was eating absolute garbage, that’s entirely fair. I think I fell into the pattern that probably a lot of 30 year old dads, I know plenty that do this, right? Like your dad, you’re working, you’re putting food on the table. If your kids are a little younger, it’s like ‘Well, I don’t want to waste this food. I was like, I hated when we would go out to eat, I wouldn’t have ought people to waste food, I’m not sure why. I didn’t just pack it up and eat it later. But like, yeah, the drinking often led to a very late night snack.

Will Schmierer 41:41
And it wasn’t like ‘Let me have one of something. It was like ‘You know, think about. I don’t know if you went to university or college, but even when you’re a kid, right? You go out, you party, and you usually end with eating of some kind, right? But that’s, I think the human body is kind of built for college. The problem is, once you get out of college or university or whatever, it’s like ‘Okay, well, the body has to go, yeah. You have to be a normal person at this point, you can do it for a couple years, but that’s, that’s the window, right?

Will Schmierer 42:12
And if you keep doing that for a couple, like, a decade plus, that’s where you run into problems. So, yeah, I am a very efficient, I really try to make things easier on my wife the last couple years. I sort of do my own thing, but we sleep as family, and I, my kids obviously don’t want to eat the stuff I eat. I eat pretty healthy now, like, I’m really cognizant, there’s snacks that get in here, here and there, but I really try not to eat super ultra processed food. I mean, I really try to, you know, it’s a process, but I’m always eating steak, chicken, really focusing on meat.

Will Schmierer 42:51
I’ve tried keto that worked pretty well, actually, especially in the early days of running, I was surprised how well it worked, because, again, I’m still a big guy, right? Like, you don’t think necessarily keto is an interesting diet, right? Because it’s predominantly meat, no carbs, and I was like running a ton, but I seem to keep going, I mean, I’m like, Forrest Gump, like, the only person I know really well, at least, is myself, who can go keto and run 20 miles a day. I mean, that’s not, I don’t think typical.

Bill Gasiamis 43:24
It’s not typical, but you kind of become fat adapted, you become adapted to taking the energy from the food that you’re consuming and burning that for fuel, and once you kind of adapt, and your body kind of understands the difference, then it doesn’t require as much carbs to get the same job done, to get the same outcome, and I probably did, maybe not a strict keto diet, but I did that for probably the best part of about four years after the first incident that I had, and I lost a ton of weight, I wasn’t exercising or doing any of that, but I was sharp, my brain was sharp.

Bill Gasiamis 44:06
And then I kind of fell into a little bit of a slump, where I was back on the carbs and all that kind of stuff, and then recently, I tried the carnivore diet, which is nothing but meat ‘My God, what a difference that makes to you. In a my brain just completely came alive, I needed to sleep less, I was so much more productive, I lost a ton of weight, I was feeling amazing all the time.

Bill Gasiamis 44:35
My testosterone went through the roof, everything changed and and I know there’s a little bit of evidence, there’s a lot of evidence now about keto, ketogenic diets, and yeah, for brain health, and for and for neurological health. And there’s just a lot of stigma around, it is just massive stigma.

Will Schmierer 45:02
Yeah, because it gets popular, and at least here in the States, I’m sure you’ve heard of Joe Rogan and people like that to do keto and carnivore and like, why wouldn’t you want to follow what Joe Rogan’s doing? I mean, you don’t have to like him or love him, or you can hate him. But the guy is 57 and obviously he’s a much physically smaller person than me, but that’s the shape I want to be in at 57, don’t you? like, I mean.

Bill Gasiamis 45:28
it’s a machine.

Will Schmierer 45:29
Yeah, It’s just strange to me, I think people you know guilty of this too, right? I’ll have a preconception or a misconception, and then like, I’ll kind of like, you know, I wasn’t always the biggest Joe Rogan fan, I used to watch UFC back in the early 2000s when I came out of college, and I used to do MMA trained down in Miami before I met my wife, and kind of moved around up and down the East Coast, but a lot of my friends did it back in Jersey, and I just think, maybe you feel this way too because of the stroke, probably because I’m getting a little older now.

Will Schmierer 46:05
I’m in my 40s, I’m like things I used to believe. Obviously I don’t believe, and it’s like, I don’t know, you know, I’m just, I’m really more educated, and I try to pay close attention to things. I think it’s the thing for me as a stroke survivor, or even with the MS, it’s more about just I’m all about trial and error, right? Like, there’s no harm in trying something like keto. And I was surprised too, I mean, I’m not strict keto all the time, because that’s tough. I think, sometimes you need a car.

Bill Gasiamis 46:05
And you can’t get you can’t be involved in in everyday life with other people and, right? And always go ‘Oh, look, I’m not eating this, or I’m not going to do that. It’s really difficult.

Will Schmierer 46:50
Well, it’s not even fun. Like, who wants to live life like that? Like, are you really going to be so dogmatic that you can’t have, like, I don’t know, I came to think of what I would want, but, like, that’s Halloween coming up here in the States. What am I going to not have? Like, a recent have, like, a Reese being Buttercup or, speak something for my kids, like, if I’m cutting out sugar, 99% of the time, I could have sugar once in a while, I mean, I’m big on sugar, obviously, because it’s that’s a whole thing too now, but it’s terrible.

Bill Gasiamis 47:16
Sugar is terrible, and the thing about what you’re saying is, you know the Joe rogans of the world, who tend to polarize society. You know you either hate him or love him, just get curious about what he’s doing that’s working. Don’t worry about the rest of this stuff, if you if you come across somebody who you would not associate with, but is doing something that is seeming to be good for their health and helping them overcome a condition or whatever.

Bill Gasiamis 47:44
Get curious about why they’re doing it, how they’re doing it, and if it might be something that’s applicable to you, and don’t worry about their politics or what they believe in, or any of that stuff. Forget that I reck, I remember, like way back in episode 6, before it was the recovery after stroke podcast, and I was just interviewing people who had overcome different health challenges. For about the first 20 episodes, I interviewed people from all over the world about different things.

Bill Gasiamis 48:11
One of the people who I interviewed was a lady called Natalie Schultz, and she was recovering from multiple sclerosis, and we’re talking about 2015 and she had completely changed her diet, and she had discovered the work of Dr. David Perlmutter and a few other doctors who were early on writing books and texts and putting content out about removing sugar, gluten, dairy, from alcohol from the diet. And she basically said that the multiple sclerosis was that bad that she had.

Bill Gasiamis 48:50
She was not able to walk anymore, and even though she still has the scars of multiple sclerosis that have occurred in her head. The Sclerosis is damaged the brain, right? She has been able to recover quite well, and her physical therapy has got her in a state where she’s very active, and now she’s able to do a whole bunch of different things that she couldn’t do and that she was on a really terrible trajectory, and that’s literally all she did was change her diet.

Bill Gasiamis 49:22
She stopped taking sugar and gluten and dairy, and she started to introduce things that she hadn’t before, which was salad, protein, dairy, sorry, protein like meat, chicken, fish. She just increased protein rich foods, a little bit of fiber through her vegetables and her salads, and she stopped having seed oils and all that kind of stuff, and she just started notice a messing, a massive difference.

Will Schmierer 49:51
Yeah, it’s wild, how all the things I’m sure you kind of grew up this way too, right? Low fat, no fat that you know, I think there was margarine, butter, and it’s like ‘Well, everything we heard, so both kind of coming, yeah. I mean, not all of it, but probably close to 95% of it, at least, which is wild, you know, eggs, it’s amazing.

Bill Gasiamis 50:16
Eggs was a big thing, that it’s gonna cause heart attacks, cholesterol, all that kind of stuff. I mean, it’s nothing healthier than eating a really good egg.

Will Schmierer 50:26
Yeah, the one thing I’m still, like, uncertain about, and because I had the ischemic stroke and the MS, and I did actually have heart issues, didn’t have a hole in my heart, but I just because of the smoking and the drinking and all the whatever, I don’t even know what caused what at this point, like it’s just, I am always a little hesitant with too much hurt me, but I love steak, and I think I’ve seen the benefits of steak, but I do sort of still always worry about that, a little bit like they always say you can’t overeat steak, but they also aren’t me, you know what I mean.

Will Schmierer 50:59
You can’t overeat steak if you’re, like, five foot two, 110, pounds, or, you know, 50 kilos. But if you’re six foot eight and eating steak the way I used to drink, that’s probably not a healthy amount of steak, you know what I mean. So they start to always be careful and times, and I’m trying to always get better at that.

Bill Gasiamis 51:17
Yeah, everything in moderation. Is that your moderation, though, looks like my overeating, though, like your plate of steak would be too much for me.

Will Schmierer 51:27
Yeah probably even still now, and I’m paying attention to it right, like, I’m not weighing things, but I’m definitely looking at the package like ‘Okay, well, you don’t need two pounds of steak for a Thursday night dinner. You need, yeah, maybe more than six ounces, but maybe not a pound and a half, that’s interesting to me.

Bill Gasiamis 51:49
Everything kind of in moderation and in line with your particular version of your body, your structure, etc. And there’s some people that can’t do red meat at all. Like, I know, I get it, there’s some. A mate of mine ran 100 kilometer marathon two weeks ago. He doesn’t eat red meat, he just can’t do it, and it’s not because he’s a vegan or anything like that, he eats fish and other other meats, just can’t eat it, and it just doesn’t go down.

Will Schmierer 52:17
I mean, actually, I wanted to say that because you were saying it’s one of the great things about the very about the various diets and different things, and I think that’s always a big thing I’m talking about it too. Is like it? You know, consider the professionals advice, like, generally speaking, as they’re speaking to a whole group, right? But you gotta, sort of, I think I probably didn’t pay attention to this until my stroke, but I really, obviously now pay attention to my body, I listen to my body.

Will Schmierer 52:45
I do all the things that I think, you know, I think I’m doing a lot of the right things. But even if I’m not, like, I’m gonna be aware of that pretty quickly. So like, if keto wasn’t working, it stopped keto, and I would go back to, like, honestly, I want to try carnivore, but I haven’t committed to, like, a full month of carnivore, because I just feel like I’m buying so much meat that it might be counterproductive, like it, but it’s defining a balance, right? It is, I’m sure I could do it.

Bill Gasiamis 53:12
It is something you definitely have to plan, gotta tell the family as well, so that there’s no possibility that you’re going to get through, you know, three days where you’re not doing it, and then five days where you are and three, can you just actually want to do a once, try it and understand it, and then kind of get it out of your system, which is what I did, without planning it, I haven’t been able to get back to a full month of just carnivore like I haven’t been able to get back to it now.

Bill Gasiamis 53:48
I’ve researched it a lot and saying that there’s a lot of people responding about it, talking about having done it for a year or two years or three, and some people don’t do well after a certain period of time, it takes several months, and they start noticing things that they’re it’s not ideal for them. And then they introduce some additional items into their diet, and things settle down again. So it is hardcore, it’s not for everybody, I’m not right. We are not recommending anything.

Will Schmierer 54:18
Yeah, for sure.

Bill Gasiamis 54:20
We’re just talking about our own experience, right? And it just, I’m a curious guy, like you saw, I’ll give that a go. Like, I’ve gone a month without eating meat, you know, I’ve done all of that stuff.

Will Schmierer 54:32
Yeah, I even got into before I figured out how bad it was for me. But like, some of the non-meat, meat, you know, I was trying that early on during the pandemic, and obviously it turns up that’s garbage, but like at least for me again, it’s highly processed.

Bill Gasiamis 54:48
It’s highly processed, it’s probably something that most people should keep away from.

Will Schmierer 54:52
Oh, yeah.

Bill Gasiamis 54:53
Tell me about your podcast, tell me about the work that you do and why you’re doing that now.

The Role of Podcasting in Sharing Alcohol and Stroke Recovery Stories

Will Schmierer 54:58
So the podcast I kind of just started. So I did, I started a podcast after my stroke, I think by December of 2020, I was just starting getting back to walking, and a lot of people would always tell me ‘Oh, Will you should have podcast. Blah, blah, blah. Started a podcast, it was literally called ‘The loveable idiot, back then, and it was just kind of like you, but I wasn’t interviewing people, I was just kind of like talking, and it was kind of actually, it was a way for me to work on speech, talk to all my friends family.

Will Schmierer 55:32
I mean, there were plenty of listeners, actually more listeners than my current podcast, because it was just kind of would never compare myself to Joe Rogan, but it was that kind of style and format, right where you’re just talking about what’s going on in the world, and kind of a commentary. It was just for fun, you know, but I knew I was pretty good at it, because I used to do a little bit of stand up, and I definitely did improv back my Miami days, and just always been a guy that’s curious and loves having fun, and kind of, a better term, shooting shit.

Will Schmierer 56:03
And I love doing podcasts, but sometimes, I mean, with lovable survivor, I do a lot of single person episodes. I do so, yeah, so that shifted. I stopped doing ‘Lovable idiot, and changed ‘The lovable survivor. Because I felt like, at that point I was ready to, sort of, you know, in this different for everybody, right? Some people never want to share their journey or their story, some people share through writing, if they can write, some people, you know, there’s plenty of mediums, some people are all over Tiktok like, it just depends what works for you.

Will Schmierer 56:36
But I had a little bit of broadcast background, and just always loved radio and Howard Stern, Joe Rogan every all the podcasters, honestly, I mean, I can’t think, I mean, there’s a few that I’m not a fan of, especially nowadays, because I thought it was a while West back in the day. Now there’s like, some people, they start a podcast, say, a business, and they think they’re going to be great at it.

Will Schmierer 57:00
And it’s just like, I mean, I don’t know if I’m great, but I got a lot more attitude and pizzazz and showmanship than some of these people. They’re like ‘I have a podcast on collecting nickels. Like, who? Who’s listening to that?

Bill Gasiamis 57:18
Yeah, you just surprised me.

Will Schmierer 57:20
Yeah because they put it on YouTube, and then all of a sudden it’s like ‘Oh yeah. Turns out 50 million people collect nickels all over the world, like, so I guess I shouldn’t be surprised. I mean, I used to be a woodworker, and I say used to, because obviously, after stroke and MS, I did a lot of work on myself and my body.

Will Schmierer 57:39
But I’m not, haven’t fully got back to woodworking as a hobby, just because trying to keep the fingers intact and, like, I just, I don’t need a slip on a table saw, or really any saw. So, yeah, it’s a great hobby, and, you know, I could listen to woodworking podcasts, but probably most people couldn’t, I guess I shouldn’t be surprised.

Will Schmierer 57:39
But with ‘Loveable survivor, I decided in 2022 to really start sharing my story, because I thought I had it. You know, like anybody that’s stroke survivor, or especially a stroke survivor with, like, an additional fun thing, like you with thyroid, or me with the MS, it’s like ‘Okay, I think I can teach people some valuable stuff. I can share my story. And like you said, it’s not really about me being dogmatic or never want to tell people what they should or shouldn’t do, but here’s kind of, here’s what I’ve been through.

Will Schmierer 58:34
And you know, I like it more than a book, right? Because a lot of stroke survivors, I mean, I know you’ve written a book, and, no, please don’t take this the wrong way. But like, there are plenty, like, I think you know what I’m talking about, right? There’s some survivors of, like, I wrote a book, and it’s like ‘Okay, good, and that’s great. And, yeah, like, I haven’t read your book, but I probably should, and I will actually after this, but I like conversation.

Will Schmierer 59:01
I like hearing kind of the podcast and the full story, even if you’re interviewing somebody else, I don’t know if you do solo episodes, but I mean, I think that probably be interesting, right? Because you’re able to share your journey in a different way, and I think it’s good to do both personally, because I love the interview style, and I need to do more of those. But I like doing the solo ones, because it’s like ‘Oh, I can just record for an hour, you know, and turn that into a podcast. Because some people prefer learning on a podcast.

Will Schmierer 59:29
Some people prefer a blog, which is why I have survivor science, because I kind of, you know, I’m trying to get everything more streamlined in a way that I dig, kind of where I can take sort of a broad perspective on the week. Here’s what I’m thinking about this week, and like, I can do the podcast episode on that, I can release a blog post or newsletter for people who prefer reading versus listening. And it’s been an interesting journey, starting to do some collabs with some different people.

Will Schmierer 1:00:00
Here over in the states, and I know you’re in Australia, right? Are you in the Gold Coast? sorry I don’t know to say these things, I only know mostly Tasmania side.

Bill Gasiamis 1:00:11
I’m in the south, I’m in Melbourne in Victoria, which is on the east coast.

Will Schmierer 1:00:18
So Sydney side, not Tasmania side. It’s embarassing, I didn’t finished that sentence, I have my uncle is an ex-pat he moved in Tasmania with his wife and my cousins when they we’re kids and now they’re older, so they’re kind of like far coast, most side of Sydney’s side. I don’t know enough about that, I travel a lot over Europe. Sorry I really don’t know terminology for Australia, no offense, for me Australia is Australia.

Bill Gasiamis 1:01:05
It’s all good man no worries, I’m east coaster, all good no worries.

Will Schmierer 1:01:23
Yeah sorry I got little distracted there, but yeah the podcast is fun, I like doing it, not trying to make millions out of it, obviously. I’m kind of evolving things coz right now I have this podcast which came obviously out of original podcast which is ‘Lovable idiot.Which is great, I think I’m gonna later I think after this video will morph that into survivor science, under survivor science umbrella, you know, big things but here in the States.

Will Schmierer 1:01:59
And I think Australia does more better job than this, and Europe in general seems do a better job in connecting stroke survivors. The healthcare system here seems to be a little bit less.

Bill Gasiamis 1:02:20
The healthcare system is good, in that, you get free healthcare, nobody gets to turned away, it’s not perfect, but my surgery it was all done under the free system, recovery and everything, costs me nothing, zero, I did’nt paid any dollar for any of my 4 years of saga.

Will Schmierer 1:02:56
That’s amazing.

Bill Gasiamis 1:03:01
Yeah, but connecting people, we’re getting better. The stroke foundation was doing a different kind of job, their job was to prevent stroke and raise awareness, and that kind of stuff, but they recently shifted to support stroke surivors as well, that added that to mandate and that they do as well. And that’s a very different feeling, because now they’re including strokes in compensates, they’re including now in all the things, in research, etc.

Bill Gasiamis 1:03:38
So there’s a whole bunch that wasn’t happening and that’s happening now, and now they’re trying to connect people, that what I wasn’t getting, I wasn’t getting a connection, that’s why this podcast exist. And I find my biggest audience is in the United States not in the Australia, which is bizzare and strange but I get it like a massive numbers in United States. 20 million, 300 million, numbers really make a big difference, like a number in Manhattan.

Will Schmierer 1:04:15
Literally, we’re I grow up there’s like 7 million people density population, let’s say half of the Australia.

Bill Gasiamis 1:04:32
That’s why my podcast exist, like 12 years ago there was nothing, it was just you’re on your own. And its improved a lot, and there’s more to go. It’s really good to see that lots of people doing stroke podcast. I think it will benifit if you bring under one of your umbrella.

Bill Gasiamis 1:04:59
It is more streamlined, for me, I record a podcast episode. This episode then becomes the audio. This audio then becomes a blog post and a transcription. And then from there, we take some clips, and those clips end up on YouTube. I’ve done some solo episodes, some of them have answered questions to stroke survivors who have asked me on Instagram, I’ll reach out and say to them, you know, what do you guys want to ask? Is there anything I can answer? And then I might do an hour video on that, but I struggle with one hour ones.

Bill Gasiamis 1:05:36
So recently, I’ve started to do, I’m going to do a series I’ve got about about 10 scripts ready? I’m going to do a series. I’ve already put out two of them, and I’m just going to put out another one next week, 6 min. videos. I talk about one particular topic.

Will Schmierer 1:05:54
Yeah, that’s a good idea. Actually, I like that, I think it’s important, right? Because there’s not a lot of stroke survivors who are like yourself, like, willing to talk about things, willing to have the different difficult conversations. Like, you know, some things about stroke are embarrassing, right? Like, I’ll say it because I don’t care, but like, I was paralyzed on the right hand side of my body in the beginning. Well, guess what? I’m right handed. Guess what’s hard to do? Certain things, wipe your butt. Yeah, and you gotta ask for help, right? Because your wife or spouse can’t always be there.

Will Schmierer 1:06:29
My wife is an angel and a sweetheart, and I love her, but she had other things, right? And like, she was very willing to help. And I thank God because, but eventually the day comes and you gotta have a nurse help you, and it’s embarrassing, humbling, all the things you think it is exactly what it is, that certainly opens up your eyes quickly, right? You’re like, All right, well, I guess we’re gonna ask for help, and I guess this is gonna happen, so let’s just get it all right.

Bill Gasiamis 1:07:06
That’s the aim for me as well. It’s just to talk about stuff that hasn’t been spoken about and to share stories. You know, I aim for it to be the biggest database of podcast of stroke survivor stories, so that anyone else who ever has one stumbles across it somewhere and goes ‘Ah, all right, I’m not alone. Okay, there’s going to be wisdom in these episodes. I’ll listen to them, and maybe that’ll help me in my recovery, that’s the whole idea.

Will Schmierer 1:07:32
I mean, that’s obviously the goal, but even if there isn’t, sometimes it’s like, you know, I’m sure somebody can glean something from something I’m saying, even if I have a random episode where I go off on the tangent, and stroke brain to us is kind of thing, a thing that happens sometimes. I mean, I’m not great at staying on script because, well, I don’t really like saying on scripts, and, you know, the improv days and the stand up and things like that. It’s but I enjoy speaking, and I enjoy having a conversation like we’re doing on this podcast.

Will Schmierer 1:08:01
Because I think that’s really where you get the best information. Like, I try not to overly edit my podcasts and episodes, and, you know, I need to do better about getting those things up on YouTube. I was in a good hoof then I got like, 25 episodes ahead and recording, and I just didn’t do the 25 videos, because, again, I got to streamline that process, that’s a bad on me.

Will Schmierer 1:08:01
But, you know, I think that’s part of being a stroke survivor too, is like ‘Hey, if you’re a stroke survivor, if you’re solo, like, you’re, what, 12 years into this now. So you, you know, I don’t want to say you you’re further or less further, but I, you know, you certainly have been a structure for longer than I have, so I imagine it he doesn’t matter about the amount of work it takes. It’s like, you know, it takes time to get get these things.

Bill Gasiamis 1:08:49
It does, it takes ages. I started in 2015 and it took me years before I started to get into the groove of one episode a week, and sometimes, bugs the hell out of me to have to do it, sometimes I enjoy it, sometimes I don’t. And at the beginning, I wasn’t committed to anything, so I’d put out an episode, nothing for a month, put out two episodes, nothing for a week, and it would just be all over the place, because I had to look after myself first. I’m most important, if I can’t be well and healthy, there’s no way I’m putting out a podcast episode, I don’t worry about it.

The Impact of Breathing Exercises on Alcohol and Stroke Recovery

Will Schmierer 1:09:26
Yeah, and I’m not putting out a podcast if my kids are starving, or my wife needs help, like, as much as I want to commit to being, you know, kind of, I don’t want to. I hate the word creator, but yeah, I mean, that’s kind of what we’re doing, right? We’re creating content, and it’s honestly, I’m sure you feel the same way. It’s like I’ve spent, you know that every day for like so I did work after my stroke for about a year and a half, but after that, it just became obvious that I need to spend more time on my recovery and less time focus on work that mattered.

Will Schmierer 1:10:00
But like, in the grand scheme of things, like, again, I was developer. I was a engineering manager for a team at a web agency, and I love the team, I love working with the team, I love leading a team, but it’s like, you know, like you said, if I’m not taking care of myself first, how am I going to set an example for my kids? How am I going to help my wife works? Important? Do I really amazing job. I got to work with some of the biggest companies in the world doing agency work. But it’s like at some point it’s like, nobody cared.

Will Schmierer 1:10:32
I love writing code, I love to being a developer, but like, at the end of the day, like, I think there’s more important things. Like you said, it’s like ‘Let me save somebody else the years of struggle. Or, you know, it feels silly to say it comparison to you, because you obviously have been around this game for over a decade now, but yeah, like, if I can help aid somebody, even if it’s not all one on one, but it’s through a podcast.

Will Schmierer 1:10:59
I didn’t found out about breath work bill until 2022, and I hate the term breath work, because it sounds corny, right? I don’t know if you’re interested or not.

Bill Gasiamis 1:11:10
I have been, it’s overused, because nobody else knows what to say right, right?

Will Schmierer 1:11:15
Right, but breathing exercises, if somebody just said to me ‘Hey, will you were big and fat? Like, do you want to run? Do you want to figure out how to run now that you’re not a smoker and drinker? It’s like, Yeah, I do breathing exercises like that. That alone, that little tweak from breath work to breathing exercises, would have made all the difference in the world. I would have paid attention somewhere along the line of 39 years. And I’ll tell you real quick, you know, I’m sure you heard of the book breath by James Nestor.

Bill Gasiamis 1:11:46
No, I haven’t.

Will Schmierer 1:11:47
Oh check it out, so he, I think he used to be, I don’t know if New York Times, but he was kind of like a investigative journalist here in the States, and he wrote the book called breath, and that’s the book that I read. It was a recommendation for my sister, It came out in 2020 but I didn’t read it, of course, until I always joke about this, because my sister’s 18 months younger than me, but she always gives me good advice, but then I don’t actually listen to that advice till 18 months after.

Will Schmierer 1:12:16
So, I read it probably, I literally think it was June of 2022. Started reading it, I was ‘Oh, my God, this is what I need. Like, I learned that you could unblock your nose, and again, I was a former smoker, so like, I just thought I would have a perpetually stuffy nose forever. Well, it turns out, if you can unblock your nose, well from there, then you can breathe through your nose. Also what helps having a stroke and not being able to run fast. So I was already humbled in that area, so I was like ‘All right, let me try running.

Will Schmierer 1:12:49
And again, it was ugly and slow in the beginning, and most people would probably consider it walking, but it got me moving, and slowly but surely, it went from like, it’s embarrassing to say, but the running was just probably, like three miles an hour. I mean, I used to be able to walk five miles an hour before my stroke, without even thinking, like, that’s how big and long my legs are.

Will Schmierer 1:13:08
But because I was forced to go slow, I was able to breathe through my nose that whole time, right? And over time, I developed the endurance and it’s, it sounds so silly, but I literally felt like Forrest Gump, and I would literally laugh to myself every day, I was like, I’m fucking running, and I’m a stroke survivor with MS and all these other people who aren’t runners, who are supposedly in great shape because they go to the gym, they can’t run down the block, and of course, they could beat me because I wasn’t going fast, but like, I could go, that’s not the all damn day if I wanted to.

Will Schmierer 1:13:44
And some days I have, like, some days I started running, and I literally won’t even stop for like, four or five hours, like, if feeling good. So it’s those big eye opener for me, I think when I look back, there are certain moments thus far throughout my recovery where I was doing well and better the first couple years, but you know, it takes that first year to really, like, wrap your head around everything, plus the pandemic.

Will Schmierer 1:14:14
For me, just bad timing, right? Because I just had my all my stuff right before the pandemic, but in a way, I didn’t feel like I was losing out on the world, because everything was closed here in the States, even Florida. So I kind of got an advantage, if you want to call it that, but a slight advantage at the beginning of my stroke, because everybody was confined to the home, so I was able to do these things, but when I read that book breath, I was like this, not only did I need to know about this my own entire life, nobody ever mentioned it.

Will Schmierer 1:14:46
It was something I could have done that first year in a wheelchair, I could have started to improve my breathing and in circulation, because there’s so many benefits of breath breathing, I keep seeing breath work, and I hate it, but I always sorry. Comes out sometimes, but you’d be amazed how much it can help, and like, I had circulation issues, probably because the stroke, probably because I was 530 pounds. Like, you know, my legs looked like two baby walruses on a baby walrus, so, you know, and now they don’t.

Will Schmierer 1:15:18
Now, you could look at me now if I stood up, and you’re like, there’s no way you ever weighed 530 pounds. And it’s like, yeah, I know that’s it’s unfortunate that I let myself go to that point, because I should never have been that big. The breathing stuff, it really kind of like I said that circulation issues, some heart things, and it’s really calm my anxiety down. Because as a strokes are, you get a little bit of you take a little bit of a a little bit of a ding, I think at least initially, the first couple years, your self confidence goes down.

Will Schmierer 1:15:52
You get, at least me, I got, I would get a little anxious because I couldn’t talk the way I used to be able to talk, but like, so there’s some anxiety mixed with this. And anxiety is normal, right? And we don’t need a we don’t always need a pill for the anxiety, it’s just like, and I’m not saying this works forever, but, you know, if you just kind of take some deep breaths and you really get into this breath work. And again, I read the book by James nester, I just went way down the rabbit hole like you. I’m sure you do the same thing.

Will Schmierer 1:16:21
You find something like these diets or whatever’s working, and you find it, and you try it, you’re like ‘Oh my God. And it’s weird how many people kind of aren’t like us in that way, it’s like, I don’t know, but you I still go to, like, local stroke groups and stuff. Like, somebody last week, they’re like ‘Oh, well, I still love eating cake. And I’m like, I mean, listen, have a piece of cake.

The Importance of Self-Care and Balance

Will Schmierer 1:16:21
But like, if you’re talking about trying to get better, and cake is the first word out of your mouth, I don’t think you’re disciplined or being, you know, it does take a discipline and obsession, good or bad, you really have to, like, you know, I thin.

Bill Gasiamis 1:17:03
I think you owe it to yourself, Man, you have to. I mean, I the one that makes me cringe the most is when you hear people say that they’re still drinking after stroke, alcohol, and sodas that just makes me cringe. I can’t come.

Will Schmierer 1:17:19
I mean if you have one soda once in a balloon, and you’re going out to a nice dinner, you know, I wouldn’t, because I’m just like, why? Like, yeah, but it’s okay, but I also drank first shit, way too cutting out sodas.

Bill Gasiamis 1:17:34
I agree, and I have one alcohol I’ll have one alcoholic drink every four months or six months, or whatever, and I’ll barely get through it, but I’ll have it, you know, because everyone else is having it, and the weather’s right, or whatever, you know it’s but yeah, when you hear people say that they still regularly drink, and people who drink sodas and smoke after stroke.

Will Schmierer 1:18:02
A very lovely woman who is, I think, she’s not the accountant at my accounting firm, but she’s somebody she has a higher position than Secretary, but she’s sort of the person that always answers the phone, her husband had a stroke around the same time as me, and she’s like ‘Oh yeah, my husband’s still smoking. I’m like, I mean, I just cringe. And it’s like, I know not everybody wants to save themselves, but like, I don’t know.

Bill Gasiamis 1:18:31
And it’s true, I’ve had that conversation with somebody that we know who had a stroke a little while after me, her husband had passed away. She’s in a 70s, right? And she had a stroke, and then she was quite unwell, and we were at a party together, and she was drinking, and I don’t it got somehow got onto drinking, and I think she might have said, you should have, she might have said, I should, maybe I shouldn’t be drinking, or maybe I’ll just have one, something like that.

Bill Gasiamis 1:18:57
Anyway, I didn’t bring it out. I didn’t start the conversation, but then when the conversation’s going, then I can’t resist and then she sort of said to me ‘Well, my husband’s there now. Like, I don’t really care about me. I don’t care what happens to me. And I’m like ‘That’s cool, so you don’t mind if you die? She goes ‘No, I don’t mind if I go. ‘Oh, that’s fair, what if you have another stroke and you live and then somebody else has to wipe your butt.

Will Schmierer 1:19:23
Yeah, I mean, that’s that.

Bill Gasiamis 1:19:26
That was it, that was the question, and that question, like, really triggered this person. It didn’t make her change anything, I only said it because the context allowed me to say it, I only said it because I’m a stroke survivor, and so was that person. So it was the right time to say it, but that’s that’s the way I see it.

Bill Gasiamis 1:19:44
That the way I see it is, if I do something to myself that causes another thing, and somebody has to wipe my butt forever, and now I caused that, then that’s not on. I don’t have a problem with people who are unwell and they’ve got to go through that transition, between being independent, losing independence, and then regaining your independence. And you need support and help.

Bill Gasiamis 1:20:06
No issue with that, and I don’t, and I’m not talking about other people, but me, I couldn’t live with myself if I did it again, because before my because I had a I had a congenital issue, a blood vessel that was faulty, but I created the perfect storm as well. I was drinking, I was smoking, I wasn’t sleeping well, I wasn’t eating, right? I was stressed. I was working too many hours, so I created the perfect storm to make it pop as well. Yeah, I’m not going to do that again.

Bill Gasiamis 1:20:35
That’s Those days are over. I went It’s too hard. It’s too hard on everybody to put them through that again and again and again from my stupidity, if life brings it on, well ‘That’s life I’ve I’ll accept that part, but I’m not going to do it to myself.

Will Schmierer 1:20:51
Yeah, it’s even like, with the MS sometimes, like, it’s not quite the same, but it’s like, you know, I’m very careful about when I walk and I run like, I when I run on the treadmill, like, sometimes I’ll hold on to the side, because what am I? I’m not gonna hurt myself on the treadmill trying to get better and then accidentally slip like it’s okay. I could hold on if I need to, you know, it’s or just anything, as you’re crazy.

Bill Gasiamis 1:21:16
Yeah, as we go to because we get to the end of this episode, and we kind of start to wrap up. I want I wondered if you can answer some questions that I ask everybody, which the first question is, is, usually it’s, what has stroke taught you, but you’ve had stroke and MS, so the question is, what has stroke taught you? What has MS taught you? Or what have they both taught you together?

Will Schmierer 1:21:40
They have both taught me together that I need to pay attention to my body, I need to take care of myself first. I know this is a cliche I answer, but I’m a father of three. My wife is deaf, I lost my parents a few years ago, so I’m sort of the oldest child. I have two sisters. Like, I don’t, you know they don’t need me, but like, I feel a sense of responsibility. It’s taught me to really be a little more calm, I mean, that’s always a work in progress, but live a more balanced, healthy life.

Will Schmierer 1:22:17
Explore myself, explore what works, I’ve learned I was always pretty, like I said, always pretty curious. So it’s not terribly shocking. Half I’ve kind of taken with going down rabbit holes, with the stroke and the MS, but just being much more intentional about a lot of things. It’s, again, it’s diet, it’s nutrition, it’s figuring things out, it’s working out, it’s finding that work life balance. I mean, now I consider myself a runner, which I never would have thought was the thing.

Will Schmierer 1:22:54
I love sports playing as a kid, but then, you know, I stopped sports, obviously, after college kind of and I just, I think I’ve learned not to not not to believe what other people say, but don’t let certain things. Don’t get into a mindset where you think you can’t do something because, yeah, you might not be able to do it yet. You might not be able to do it tomorrow, but just keep going and pushing. I mean, I’m 41 I have three kids, 21, 10 and nine, a wife who’s deaf and like I’m back in school going for a master’s degree, because I just I have this weird drive, it really is obsession.

Will Schmierer 1:23:39
And drive like nobody’s going to tell me no until, until my body tells me no. You know, I just yeah, just learn. I learned a ton, honestly, and I think I always knew these things deep down. Unfortunately for me, the stroke is more of a blip in the road, I think it’s like I was trying to do so much, so fast, for so long, that I really did learn to figure out how to do the same things I’ve always wanted to do, just do them at a more what I would call normal pace, like here, like life really is kind of a marathon.

Will Schmierer 1:24:17
If you’re doing the best you can and you can.you know, lay your head on the pillow every night and fall asleep and feel like you’ve given the day the best you can and keep going, I don’t know it’s I know that’s not a great answer, but I just feel like I’ve learned a lot about myself over the last five years, and I really hate to say fortunate for having this stroke, but in those way I was because I was 530 pounds in an alcoholic and the cigarette smoker and things I’m not anymore.

Will Schmierer 1:24:47
So again, I think I would have preferred to learn it a different way, but I feel good about where I’ve come from, where I’m going and where I’m headed.

Bill Gasiamis 1:25:00
What’s been the hardest thing about this journey for you?

Will Schmierer 1:25:06
Truthfully, asking for help and realizing that I once operated at a speed with which was, by all accounts, pretty insane in terms of being mentally sharp, quick witted, just even behind a computer, typing 100 words minute back in the day, 8monitors, like, none of it’s necessary, and like, who was I impressing? Like, you know, there’s a level of speed at which a person should operate, and there’s just be honest fucking insanity, and it’s like, you can’t maintain that speed for that amount of time. Like, I’m not Elon Musk.

Will Schmierer 1:25:58
I’m not trying to be Elon Musk, or, or any of those people like, you know, I just want to be a fairly normal guy, and I was trying to operate at a speed with which was just not sustainable, to be honest, and that’s probably what led to some of the smoking and the drinking and the not being able to sleep and the constant mind chatter, and it’s just, I learned it the wrong way, not the way I wouldn’t like to learn it, but now I know better.

Bill Gasiamis 1:26:26
And that part was that not asking for help, kind of what makes you do more things? Because if, if you ask for help, then somebody else is doing that task or or it’s being outsourced or something, you know what I mean, whereas when you’re not asking for help, then everything is on your shoulders. You got to do it all anyway.

The Role of Community and Support in Alcohol and Stroke Recovery

Will Schmierer 1:26:47
Yeah, so that that’s a real struggle. So again, I operate, and always have operated at a very different speed. My wife, I love dearly, and she is a certain way, and her speed. She’s South American, Chilean, Miami, you know, that’s where we met, where we were. We met before we got married. And She has a more laissez faire attitude towards things in life. She’s much more about enjoying life. But for me, I don’t enjoy life unless we’re doing things or getting things done, or, like, you know, I can’t, like a lot of people, I can’t really enjoy the enjoyment time.

Will Schmierer 1:27:29
If I haven’t gotten a bunch of stuff done right. Like, with that work comes reward, and that’s kind of separate from having a stroke, but I just my mindset and like, I want to earn that downtime, that free time. I crush it all day, right then I can do some recovery stuff while I’m sitting and watching TV in the evening.

Will Schmierer 1:27:29
There’s no guilt around sitting down and doing nothing.

Will Schmierer 1:27:34
Yeah, and asking for help is just it’s tough because I want people to help at the speed with which I want to move. And I’ve had to really learn that that’s not how the rest of the world operates. So that’s what makes asking for help so tough for me, it’s not the actual asking for help, it’s like ‘Could I get your help, and could you also please do it as quickly and fast as I would like to do it, or we used to do it please. Now that’s really the issue with asking for help.

Bill Gasiamis 1:28:25
Wow, man, that’s crazy. Well, last question is, what would you like to say to the people that are listening and watching?

Will Schmierer 1:28:37
To the people listening and you know, whether you’re a survivor, caregiver, friend, family member, it it’s annoying as hell to hear that. It takes time, but it takes time and learning what’s best for you as a survivor, a caregiver, it doesn’t matter what role you play, they’re all important, and you know, realizing things are going to change, it’s not an easy path. There’s no magic pill for any part of the equation, it’s just, it’s really just continuously learning.

Final Reflections and Future Goals

Will Schmierer 1:29:11
Be visual, be curious, ask questions, you know, support one another, support yourself. Again, whatever role you play if you’re not taking care of yourself, corny, cliche stuff, but true, if you don’t take care of yourself, you’re not going to be able to help yourself or anybody else who’s part of the equation. So, you know, just kind of do your best each and every day.

Will Schmierer 1:29:34
Be proud of what you do ‘Down day doesn’t mean it’s down week, down week doesn’t mean it’s down month. Like, just keep stay disciplined. Maybe not for everybody, but for the survivors out there, be obsessive about your recovery.

Will Schmierer 1:29:50
Be disciplined and keep working at it. I know seems so cliche and terrible, but I thought the same thing. Even probably three years ago, I was like ‘Ah, things aren’t going as fast as I want, but you’d be surprised. I fully believe you put in the work you’re you’re eventually going to see the results, it may not happen at the speed with which you want, but yeah, I just, I think that’s important.

Bill Gasiamis 1:30:17
Yeah, brilliant man, Will thank you so much for joining me on the podcast man.

Will Schmierer 1:30:21
Thanks.

Bill Gasiamis 1:30:21
I appreciate. Before we do go, just give us the links. Where can people find you? We’ll have the links on the show notes anyway, but where can people find you?

Will Schmierer 1:30:30
Yeah, you can find me, usually my handles, I’m all over social media. It’s either ‘Survivor Science or Survivor Side, depending on how many characters you’re allowed. You can also check out, I thhink Instagram, Facebook, X Twitter. They’re the same thing, Tiktok. Think lovable, kind of getting everything under one umbrella still.

Will Schmierer 1:30:52
So yeah, it’s a bit of a hodgepodge, but you go to survivorscience.com where you go to the podcast show, it has all the links and it’s not hard to find me, I kind of built the internet for most of the 2000s so you can google my name, if you could spell it, and you’ll find me pretty quickly.

Bill Gasiamis 1:31:09
Awesome, man. Thank you so much for being on the podcast.

Will Schmierer 1:31:12
Awesome, thank you Bill. Thanks for having me, I appreciate it.

Bill Gasiamis 1:31:15
That brings us to the end of episode, 327 I hope will story of resilience post traumatic, growth and transformation moved and inspired you as much as it did me. His journey from battling severe health issues including alcoholism and multiple sclerosis to become a dedicated runner and embracing a new lifestyle is a testament to the incredible capacity for change and growth after trauma, a heartfelt thank you to everyone who leaves comments on the YouTube channel and to those who have given five star reviews on Spotify and iTunes.

Bill Gasiamis 1:31:51
Your support helps other stroke survivors find hope and guidance through this podcast. If you haven’t already, please consider subscribing, liking and sharing this episode so that more people can discover these stories of post traumatic growth. For those who’d like to support the podcast further, visit patreon.com/recoveryafterstroke, every contribution helps share more stories like wills offering hope and insights to those navigating their recovery journeys. Thank you for joining me today, and I’ll see you on the next episode.

Intro 1:32:27
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:32:57
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Intro 1:33:21
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Intro 1:33:48
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The post Alcohol and Stroke Recovery: Will Schmierer’s Inspiring Path appeared first on Recovery After Stroke.

In 2009, while on a family vacation in Vietnam, Antonio Iannella, author of Saigon Siren: A Stroke Survivor’s Life-Changing Moment Abroad, experienced a life-threatening brain hemorrhage caused by an arteriovenous malformation (AVM). The experience was terrifying, as he struggled to communicate with foreign medical staff, faced language barriers, and navigated an unfamiliar healthcare system. But it was in these challenging conditions that Antonio’s life after the stroke truly began, shaping both his journey and the powerful story he would later share in his memoir.

Overcoming Stroke: Challenges and Small Victories

Like many stroke survivors, Antonio’s life after the initial crisis became focused on rehabilitation. The road to recovery was long and full of unique obstacles many face in stroke rehabilitation. The stroke left him with several physical limitations, including challenges with mobility, vision, and coordination. Each day brought new struggles, but it also revealed small victories that came with persistence. For Antonio, even learning to sit up or move his right hand again felt like huge milestones in his recovery after the brain hemorrhage. These small victories not only marked progress but served as reminders that life after stroke can still be meaningful, even if it looks different from before.

Finding Purpose in Life After Stroke

One of the hardest parts of stroke recovery is the emotional journey. For Antonio, rethinking his life purpose and adapting to his limitations became essential. His love for music faced a significant setback due to physical limitations, but he didn’t give up. Antonio adapted, learning to compose and create music with one hand. This adaptation allowed him to find joy in his creative pursuits, a powerful example of how finding purpose can redefine life after stroke. His experiences, captured in Saigon Siren, provide insight into the resilience that many stroke survivors find along the way.

Community Support and Emotional Recovery After Stroke

Emotional support is essential for stroke survivors, and Antonio’s journey underscores the importance of community. He found comfort and strength in connecting with other stroke survivors who understood the ups and downs of recovery. This sense of community helped him cope with the unique emotional challenges of life after a brain hemorrhage, providing valuable insights and strategies for overcoming day-to-day struggles. Through his book, Saigon Siren: Memoir of a Stroke Recovery, Antonio offers readers an inspiring account of his journey, from the shock of the stroke to the long, slow climb of recovery. Writing became a therapeutic outlet for him—a way to process emotions, reflect on his growth, and reach out to others who might feel alone on their own paths to recovery.

Life After Stroke: Lessons in Resilience and Growth

Antonio’s experience serves as a testament to the power of resilience. Life after a brain hemorrhage, like his, is often marked by a series of setbacks, adjustments, and personal growth. In learning to let go of old expectations and accept a new normal, Antonio gained a sense of peace by living in the moment and focusing on what brings him joy and purpose. His story in Saigon Siren is a powerful reminder to other survivors that life after stroke, while challenging, can also be rewarding. The journey of adapting and overcoming the hurdles of stroke recovery opens up new perspectives, strengths, and possibilities.

Embracing Life After Stroke: Antonio’s Message to Other Survivors

Antonio’s message to other stroke survivors is simple yet powerful: Don’t let setbacks define you. Life after stroke might look different, but it’s full of potential. Recovery after a stroke isn’t about returning to who you once were but about discovering who you can become. Finding purpose, whether through creativity, community involvement, or sharing your story, can bring new meaning to life after stroke. If you or a loved one is navigating the journey of life after stroke, remember that support is available. Connecting with other survivors, discovering local resources, and finding inspiration in stories like Saigon Siren can offer guidance and reassurance.

Conclusion

Antonio Iannella’s journey in Saigon Siren: A Stroke Survivor’s Life-Changing Moment Abroad highlights resilience, adaptability, and purpose. Despite the difficulties posed by his AVM and his journey back to health in a foreign country, he emerged with a new perspective on life. His experience serves as an inspiring example for stroke survivors everywhere, showing that life after a stroke can be a time of growth, creativity, and unexpected joy. For anyone on a similar path, Antonio’s story stands as a beacon of hope—a reminder that, while recovery after a brain hemorrhage may take time, there is always room for possibility and growth in life after a stroke.

Life After Stroke – Overcoming Challenges Abroad and Finding Purpose

Discover Antonio Iannella’s inspiring story of life after a stroke, overcoming adversity abroad, and finding new purpose.

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Highlights:

00:00 Introduction
02:57 Antonio’s Journey with the Stroke Foundation
04:31 Antonio’s Initial Stroke Experience
07:35 Adjusting to Life After Stroke
11:20 Family Dynamics and Personal Growth
17:51 Writing and Publishing the Book
28:28 The Stroke Experience and Recovery
37:28 Returning to Australia and Continuing Recovery
43:33 Finding Purpose and Joy in Life After Stroke
47:31 Advice for Other Stroke Survivors
54:00 Back To Driving After A Stroke
1:04:23 Life After Stroke And The Pseudobulbar Affect

Transcript:

Introduction – Life After Stroke

Bill Gasiamis 0:00
Hello everybody, and welcome to episode 326 of the recovery after stroke podcast today, I’m honored to bring you the inspiring story of Antonio Ianella, a survivor of a brain hemorrhage that struck while he was traveling in Vietnam. In this episode, Antonio shares the challenges he faced recovering in a foreign country, overcoming language barriers and adapting to his new physical limitations.

Bill Gasiamis 0:29
His story reveals the power of resilience, adaptability and finding purpose in life after stroke, before we jump into Antonio’s journey, I’d like to take a moment to thank everyone who supports the podcast. If these episodes have helped you or a loved one in any way, please consider supporting the show through Patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 0:55
Your support keeps the podcast going and allows me to continue sharing these valuable stories for stroke survivors and their families, I’d like to make a special shout out to our newest Patreon supporters, JK, Jolene Oh and Cecilia, thank you for joining our community. Your support means so much, and I’m truly grateful to have you with us.

Bill Gasiamis 1:20
Antonio Ianella, welcome back to the podcast.

Antonio Iannella 1:24
Thank you, Bill. How are you mate? Good to see you again.

Bill Gasiamis 1:27
I’m really good, man. Thank you. Is so good to have you back. The first time we met was the 15th of November 2017 sorry, that’s not the first time we met, that’s the first episode that we recorded.

Antonio Iannella 1:40
Yes, we met, maybe before then we met in, I reckon, about 2011 or something like that as well.

Bill Gasiamis 1:48
2013 we met at the Stroke Foundation, where we both decided to be speakers on behalf of the Stroke Foundation to raise awareness against stroke, right?

Antonio Iannella 2:02
Yes.

Bill Gasiamis 2:04
Let’s talk a little bit about that briefly before I give people a bit of a rundown of the previous episode and what you’ve been through, what was behind you deciding to go and be an advocate for Stroke Awareness, for the Stroke Foundation back then.

Antonio Iannella 2:22
Yeah, I am. I met someone who was doing that role, they were a stroke survivor, and they suggested I get involved. So I applied and got the gig pretty straight forward, and she sort of thought I’d be a good candidate, and like you and I have both become our community, representing for our language, well, our heritage.

Bill Gasiamis 2:49
That’s it, yeah, you, Italian, me and Greg.

Antonio Iannella 2:51
Yes, yeah.

Life After Stroke: Journey with the Stroke Foundation

Bill Gasiamis 2:57
And what was it like doing that for you, though you were in the thick of it then. So what was it like actually doing something like that? What was the benefit of it I suppose.

Antonio Iannella 3:06
At first it was the challenge and wanting to be involved in raising awareness, and then I just really enjoyed the people and meeting everyone and meeting you and everyone else, and there was this spirit about volunteering, that when we’d get together and have those meetings and discuss what we’re doing, that would just the energy just was so lovely that I really enjoyed it, and then getting to do those presentations to the public was just felt so critical and so needed in society.

Antonio Iannella 3:40
So, I just locked it up and got a lot out of I’d walk away from a presentation exhausted, but just so fulfilled, and so and there’s different types of exhaustion. There’s those that you feel like you’re so fatigued, especially with stroke, that comes from nothing, you can’t work out, why do I feel so tired? And then there’s fatigue from doing too much, but you’re satisfied because you’ve you’ve accomplished something.

Bill Gasiamis 4:08
It’s a completely different version.

Antonio Iannella 4:10
Yeah, absolutely. So that’s the feeling I was getting from the presentations.

Bill Gasiamis 4:15
Yeah, that’s the one that you go after, you go after that kind of fatigue, because there’s a massive payoff, right? Whereas fatigue that just drives you to the bed or to the couch, that’s the kind of fatigue you want to not have and you want to avoid.

Antonio’s Initial Stroke Experience

Antonio Iannella 4:31
Absolutely, absolutely. I had one of those days yesterday, and it was just I didn’t sleep so well the night before, and it was just a horrible fatigue that, you know that I don’t want to feel like this, but you just plow through it and I’ve got a busy week coming up, and another by the end of next week, I’ll be quite fatigued, but it’ll be a nice feeling. So yeah, absolutely, mate I get it.

Bill Gasiamis 4:54
When we met in on the podcast, November 15, 2017, And by the way, for anyone watching and listening, I advise you guys to go back and get a bit of a sense of where Antonio was at back then, there’ll be links in the show notes, so you’ll be able to find the previous episode that we recorded. Your journey, you discussed your journey basically in 2009 you were 38 overseas on a family trip. You’ve experienced a stroke, you’re in Saigon, right in hospital in Saigon.

Antonio Iannella 5:31
Yes.

Bill Gasiamis 5:32
No language, trying to navigate all of that kind of stuff. And then, as we kind of went through the episode, you spoke about the the mental and emotional struggles are very common, everything, absolutely yes, go through all the time, depression and anxiety and then, like somehow, sort of discovering resilience at the same time. After you guys got back, you you went through a divorce as well, you guys separated.

Antonio Iannella 6:03
We had we it was kind of what I after so many years, I’ve concluded that was the straw. It’s cliche, but the straw that broke the camel’s back, and there was just, there was a history of some trouble there and problems, and it just like it was just beyond repairable by that stage, and the best thing to do was just start again, I guess, and it was also part of that journey of rebuilding a new life.

Bill Gasiamis 6:33
It seemed to be like a line in the sand moment for you.

Antonio Iannella 6:36
Yeah and, you know, yes, line in the sand. We’ll get to that.

Bill Gasiamis 6:40
And if I remember correctly, there was this other weird benefit that you didn’t expect, which was because you had shared custody of your children, sometimes, when the children with their mum and your ex wife, that would give you that recuperation time and rest time to recharge so that you could see them again down the road?

Antonio Iannella 7:01
Yes absolutely, that was critical, and also gave me an opportunity to explore the things I wanted to do without having to think about, you know, get my kids to school or doing those tasks that quite as a parent, I could just solely be about myself, and it was a good healing process that I had to go through.

Bill Gasiamis 7:23
Yeah, and what are your deficits that you’ve had to live with, that you’re kind of overcoming, or that you’ve adjusted to having tell me about the deficits?

Adjusting to Life After Stroke

Antonio Iannella 7:35
Yeah, adjust. I think adjusting is the right word or healing, because you, for most stroke survivors, you’re left with some kind of deficit, and I think through a process of time, you you’re able to work at how you can manage those and how you can make your life work. For me, you know, I was in a pretty bad way, lost complete function of my body. Had problems speaking and vision, hearing loss, so and once I got back to walking, what was left was mainly weakness on my left side, so I don’t have a great little control of this hand.

Antonio Iannella 8:12
I still have problems with this, I definitely see my speeches come back, which is pretty good, walking and balance, they already, they are an issue, but fatigue is also a massive issue. So yeah, I’m left with those, and it’s really, it’s all about managing and just finding ways to do things, get back to doing things that I enjoy, and finding a way to do that that works in with my, I guess, limitations, and a great word, but I can’t run anymore, and I can’t ride a bike, and there’s so many things in I can’t go hiking and but, you know, I can do other things.

Antonio Iannella 8:52
I do go walk in and I work out, and so, yeah, it’s really about replacing a lot of things that you once did with new things that you can do, and I think, I don’t think you can learn this. I mean, you can’t be taught this during your early days of recovery. It’s something you just physically and emotionally have to go through, and you get to this point eventually where you discover, I’m going to let go of what was there and rather focus in on what I lost.

Antonio Iannella 9:21
You begin to sort of focus on what you still have and develop that into something that works for you, I don’t know, I don’t want to, I don’t want to ever say that, it’s never going to be the same, because some people make really, really good recoveries, but you know, there’s going to be always something left behind, and you just got to apply that to your life and go, and like I said, it’s a very long bridge to cross.

Bill Gasiamis 9:46
You’ve been doing it for 15 years.

Antonio Iannella 9:48
15 years, yep.

Bill Gasiamis 9:50
Is this 15th year kind of the best year yet, I know that you’ve had a lot to overcome, like most drugs vibes, you know, there’s been plenty of water under the bridge. But is this the best year yet? As far as your mental health, your emotional health, your physical health, where are you at with the whole journey?

Bill Gasiamis 10:11
Let’s take a quick break here, but we’ll be right back with more of Antonio’s inspiring journey in a moment. While you’re here, I’d like to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. This book isn’t just a memoir, it’s a practical guide for achieving post traumatic growth after stroke.

Bill Gasiamis 10:32
You’ll find stories from other stroke survivors who, like Antonio, found ways to grow and adapt after their trauma. You can find it on Amazon or at recoveryafterstroke.com/book.

Antonio Iannella 10:46
I do feel this is the best year, because it’s something that gets overshadowed a lot is the emotional recovery, and we don’t spend a lot of time in rehab working on that, if you think about it, when you’re in for me, when I was in rehab, it was physio, hydro, OT, OT Assistant, psych. Only one session is psych a week, psychology and so and you you’re not really prepared for the emotional struggles you have once you’re out of the hospital system.

Life After Stroke: Family Dynamics and Personal Growth

Antonio Iannella 11:20
So you go through that process of learning and really connecting with other stroke survivors who kind of advise you that this is normal, where your feeling is normal, and then you start to go, okay, so yeah, there’s been a lot of learning, a lot of growing, and finally arriving at that place where I feel like, like your book says about this, it feels like it’s the best thing that’s ever happened to me, but it’s taken a long time to get there, and I’m not going to say that there are days where I wish that I just hate this thing, because there are, you can’t.

Antonio Iannella 11:51
I’m not going to pretend and say it’s all great and running around giving people high fives, because it’s not the way it is. It’s really just there are days I want to give up. Honestly, there are days where I’m just like, I’m human. I want to give up, but I just try and make sure there’s only minimal amount of those days, and they’re more positive days, and I guess that outweighs it, and I’ve been able to get back to doing some of the things I just love to do, and I look at it like, if I didn’t have my stroke.

Antonio Iannella 12:20
I wouldn’t have had that opportunity to do these things, and you know, I call it, there’s Spanish word, it’s two words, jerky or complete though, which means ‘Full Circle. And I feel like I’ve come full circle back to who that person I was before my stroke, well before my stroke. So that put me on that path of what I want to do with my life and pursue the things I’m interested in.

Bill Gasiamis 12:46
Do you feel like you’ve found your essence?

Antonio Iannella 12:50
Yeah, I feel like I’ve found that person I’ve worked to want to be. When you’re younger, like in your 20s and 30s, you just haven’t fully matured to that,I’m in my 50s now. So you get to that point where you just go ‘Hey. You know, you realize what’s so important, and, you know, and I had to let go of all those things that most of us are doing, like pursuing a career.

Antonio Iannella 13:15
Doing really well at work and and then just letting all that go and just reinventing myself and getting back to the things I love, like making music and being creative and enjoying the sunshine and nature and, just simple things that you know bring me joy. And you know, a lot of times, in my previous life, I didn’t, not that I didn’t have those things, but they were just minimal because you’re busy, busy, busy, busy.

Bill Gasiamis 13:44
Stopping to smell the roses, like really, and then you just do it, and it’s easy to get distracted, right? It’s absolutely tons of things to distract. So everyone does that and I think it’s very standard and normal.

Antonio Iannella 13:57
It’s normal, it’s not there’s nothing wrong. It’s life, and I love to sort of be able to do so, especially when you know, I’ll give you a little example. About a week ago, I saw a friend, he posted some video of himself hiking through somewhere Kangaroo flats or somewhere just outside of Melbourne, and it looked it was the sun was shining, and he had a massive smile in his face.

Antonio Iannella 14:24
And I just had that moment, my heart just went ‘Oh, I just love to do that, but, you know, and you know, and I hated where I was at, but then I just let it go and move forward and then focus on those things that make me happy. So, yeah, it’s normal. It’s a normal lifestyle where everyone does there’s nothing wrong with it, just finding time to be able to enjoy those small things is really important.

Antonio Iannella 14:24
Yeah when all this happened to you, the family was young, wasn’t it like?

Antonio Iannella 14:50
Yeah, they’re all young.

Bill Gasiamis 14:59
How young were the kids?

Antonio Iannella 15:02
Three daughters are all under 10. So there was a 10 month old, a five year old and an eight year old. And yeah, we’re in Vietnam at the time.

Bill Gasiamis 15:13
Yeah. So now they’re all sort of approaching the end of high school, and some of them are probably already finished, and there’s a whole different responsibility for you, with regards to the kids, that relationship has shifted. Tell me what it’s life now with the kids.

Antonio Iannella 15:30
Yeah absolutely, it’s it has shifted greatly, because they’re two of them adults and in the workforce and living on their own and moved out at home. So they’re doing really well. My youngest daughter, 16, she lives with me, and so there’s still that level of parenting responsibility, but yeah, it has shifted where there’s not so much onus on me just having to clean up and look after them and care for them, and they’re a lot more responsible for what they do and, yeah, so it’s given me a bit a bit more space a bit more room.

Bill Gasiamis 16:09
And allocate time to yourself more.

Antonio Iannella 16:11
Yeah, well, if I had hadn’t had this time, I wouldn’t have been able to achieve some of the things I’ve achieved.

Bill Gasiamis 16:18
Is it a bit of a relief when they move out? I mean, it was for me, and it’s sad, you know, it was like bittersweet when my boys moved out in the 20s, I was not even 50, and they had moved out and empty nester and all that kind of stuff, but the space that they created was a relief like it was. When you have a relationship with your kids in the house, it’s always the parental relationship.

Bill Gasiamis 16:48
Doesn’t matter how old they are, but when they move out, it shifts. You have a different adult relationship with them, and it’s not about parenting them or making them pick up after themselves, or any of that stuff. Did you find that?

Antonio Iannella 17:02
As you were saying that I was just resonated with me, because that’s what happened with especially with my daughter, Molly, who moved out only a year ago or so, and she and I’m just watching her from a distance, just into that world of, you know, being responsible paint her own bells. She started a little business where she makes film and doing that, and watching her just grow and picking up clients, and it’s just and like you said, it’s more of a it changes.

Antonio Iannella 17:32
The dynamics change because you’re no longer overseeing them as a parent, under your household. They’ve got their own household, and you just witness it from a distance and then provide support, maybe in the in the sense of just some guidance, and it’s a nice it’s a nice connection.

Writing and Publishing the Book Saigon Siren

Bill Gasiamis 17:51
You know the kids moving out. Do you think that’s what created the space for you? We’re going to talk about your book right now for you to kind of finally wrap up this project of your book, or tell us a little bit about that journey, about the book. Firstly, before you start telling us anything, do you have a copy of it there? Show us.

Antonio Iannella 18:09
Sure thing.

Bill Gasiamis 18:10
Saigon Siren, memoir of a stroke recovery, Antonio Iannella, fantastic man. I love the cover. I mean, the whole thing is amazing.

Antonio Iannella 18:10
Thank you.

Bill Gasiamis 18:10
But you’ve been on this writing journey for quite a lot of time. I thought it four years for me, took a while. But how long have you been on this writing journey?

Antonio Iannella 18:32
It began, I reckon it began around the time I met you back in 2012 and it just the idea was just bubbling in the back of my head for a while, and and then I got into about 2012 with no idea of what I was doing. Just thought I’d just write, and I wrote, wrote, wrote, and then I had some guidance, had some involvement with other writers through a writing group that was really helpful, because they kind of gave me an idea on how to get a story out and how to tell a story.

Antonio Iannella 19:05
Because, you hear so often, you know that saying that everyone’s got a book in them, it’s true, they probably do, but telling the book or writing the book is just a whole nother thing completely. So that’s what I had to learn, I knew how to story of Vietnam thing and recovery, and then after about a year of 2012, 2013 maybe up to 2014 it kind of stopped, come to a bit of a stop, and I got involved with doing other projects, music and and then it wasn’t till COVID, and that reignited it, I thought, you know, I’m going to get back into writing.

Antonio Iannella 19:42
One of the first things I did, I had about 80,000 words. One of the first things I did was I extracted a chapter bang in the middle, and turn that into a short story, and I sent that into just the local writing competition through the library, and I received the third prize award, and I thought ‘Wow, there’s something in this. And then I started sharing the story with a few friends, and they loved it, and it just gave me that confidence too.

Antonio Iannella 20:10
And I must say, there was one other person who was reading my chapters at that time as I was writing them, and she, although she was quite brutal in terms of the feedback, but it helped my writing so much, because I’d send the chapters in, she just like a school teacher, she just highlights sections and go, I love this bit, but you lose me here. That’s cliche, you can do better.

Antonio Iannella 20:34
I’d be so angry, and I wanted to yell at her, but then I’d just get in there and fix all that and rewrite it, and it just gave me strength, and it gave me confidence, and I just kept writing, and yeah, just little key things I did was like this laptop that I’m talking to you on, I bought that and I dedicated it to writing, and I just, although I couldn’t live plenty room in my home to write. I actually went to the library each day and just sat in a corner and just wrote.

Antonio Iannella 21:07
I’d be going through scenes of my recovery, or when it happened, tears streaming down my face I’m in the library. Just imagine all these things and writing and writing and just getting right into the story, and I did that purposely to just have that feeling of ‘Okay, I’m at the library for four hours and I’m going to write, no distractions. You know, there were times I didn’t even bring my phone, my computer wasn’t connected to the to the internet at that time.

Bill Gasiamis 21:38
Wow, it’s really going into it, I love them, and going into the time to write was really difficult for me as well. Like I started writing in lockdown as well, the whole purpose of it was, we were in Melbourne, so we had the biggest lockdown in the world. So there was a lot of downtime, a lot of time to do nothing or something constructive, and that’s what it was for me, and the hardest thing for me was writing, reliving the whole thing wasn’t so hard for me. I wasn’t that emotional reliving it, but I was emotional telling the story in public when I was launching.

Antonio Iannella 22:16
Yeah, did you? Did you find once you when you told the story, like verbally or wrote it, it kind of helped you heal in a way where, I guess it was cathartic for you.

Bill Gasiamis 22:29
Indeed, man is extremely cathartic. I mean, I didn’t expect that, part of I didn’t think that that was what was going to happen, I wanted to tell a story too. I didn’t know what story to tell, either, and that feedback that you were getting that was difficult to hear that chapter, you know, starts off great ‘Oh, this paragraph is terrible, and I was going through that as well, and that’s interesting. How did you find that was difficult? What was difficult about it? Was it that did you initially have that untrained mind of thinking ‘Oh, they’re attacking me.

Bill Gasiamis 23:05
Or was it they’re they’re hurting my feelings? What was it? Because it’s not, it’s constructive feedback, because you want to, they wanted you to have a good book. But I felt that too, that whole weird people are going to give why are people giving me a hard time about it, like that was strange. What was that all that about do you think it?

Speaker 1 23:25
It was strange, it happened also, when I was in the writing group the first time around with the first draft, they also would point out things, and I was but it’s really hard to be objective when you’re writing your own story. So it’s when you’re in the in the storyline, and you’re writing things, you can visualize it in your head, and you know what you’re trying to say, and sometimes you miss critical components that shrink a sentence or a paragraph together because you can see it.

Antonio Iannella 23:56
It’s someone else who does not know nothing about you, they can’t, so it’s really important to get their feedback, and I think it’s about ego, feeling like you get a bit hurt, because all you really want is to be I write about in the book is, you know, all you want is, like, I remember the first chapter I submitted to the writing group when I was part of that group, and I was so you would submit chapters every week, and people, everyone would read it in the group. And then you get together once a week and you talk about the chapters.

Antonio Iannella 24:26
Each person submitted a chapter. And I was, you know, I have submitted my first chapter, I was so excited, I was gonna, I felt like I was gonna go into that meeting library and everyone’s gonna be ‘Oh, you’re a champion, you know, in all these high flames. And there’s the complete opposite, you know? They just, they just taught me to not tore it to shreds, but just everything.

Bill Gasiamis 24:50
Literally, critically, observing it, right? They were observing it critically from a literary perspective.

Antonio Iannella 24:58
Absolutely, yeah.

Bill Gasiamis 24:59
And you are a legend, I think you’re great, everyone thinks you’re great, but yeah, it’s just weird. This ego, like, it’s like little kid emotions, like, it’s some weird stuff that comes up, but it’s, do you feel better for what? Obviously you feel better for it, but in your mind, you might not write another book, I don’t know, but in your mind, does it make you feel like I know how to write another book now, like I could do that better and easier next time?

Antonio Iannella 25:30
Yes, absolutely I do feel that, but I also have been writing a few stories recently, and I’m finding them a lot more critical of my own writing, and I find something as well. Like the other day, I dug out an old story I wrote about a year ago, and I was going through it again, thinking to just, it was just a short story, and I thought I might spruce it up and and I read it to myself, and I was like ‘Oh my God, this is horrible.

Antonio Iannella 25:58
So it was just, I just had to find a way to make it more me and I think learning to write through your own voice and getting the confidence to let your voice speak is part of the journey, and that’s what you need to, I felt I needed to learn.

Bill Gasiamis 26:20
I love that whole idea of getting somebody else to look at your work and and kind of criticize it, so to speak, because, I mean, you don’t want to go through the whole process self publish, which we can do these days, and then put out a book that nobody can read because it’s all over the place.

Antonio Iannella 26:39
Absolutely.

Bill Gasiamis 26:40
Put out a book that’s boring to read or goes into too much detail in the wrong thing that’s not relevant to stroke recovery.

Antonio Iannella 26:48
Absolutely, yeah.

Bill Gasiamis 26:49
So it’s good that you’ve got that, a learning now, that learning is really what it is. It’s another level of learning about, how you have to structure things to deliver a compelling story.

Antonio Iannella 27:04
Yeah, it is important to have those components, because you got to remember, at the end of the day, whoever’s reading the book, the bottom line is, it’s about them being entertained, and you have to, you have to separate almost how you feel about the story, and just look at it from a one of the things I did was I wrote as if I was speaking to someone like you and I are having this conversation, like I’m telling them the story, and always keep in mind, keeping them in mind that this is what I’m doing.

Antonio Iannella 27:33
I’m pitching this story to one person and just trying to make them feel connected and and entertained as well. So what those, all those factors.

Bill Gasiamis 27:44
It’s about the reader.

Antonio Iannella 27:45
Yeah it’s about the reader, absolutely. So that’s what I was I really focused on. That was making it about and trying to be vulnerability is something that we, all, you know, sort of naturally shy away and disclose and keep to ourselves, but I just felt that had to be key component in the story in order to carry the reader through and make them feel connected to the story.

Bill Gasiamis 28:12
Awesome, my copy hasn’t arrived yet because it’s literally just become available, hasn’t it?

Antonio Iannella 28:17
Yes, just yesterday.

Bill Gasiamis 28:19
Yeah, alright so this is being recorded on Saturday, the 19th of October.

Antonio Iannella 28:28
Yes.

The Stroke Experience and Recovery

Bill Gasiamis 28:28
The interview is going to go out in about six days from now, so anyone who’s listening to it, it’s already gone out, and that means that the book has been out for about a week, and everybody can get a copy online.

Antonio Iannella 28:42
Okay.

Bill Gasiamis 28:43
I’ve received the PDF draft of it, and I’ve skimmed through and had a bit of a look again. I didn’t have time to read the whole thing, but I’ve made some notes that I want to sort of go through and talk about.

Antonio Iannella 28:54
Happy to do that, mate.

Bill Gasiamis 28:56
So, I we’ll go back a little bit. We’ll go back to Vietnam, what’s going through your mind when you’re experiencing these weird symptoms you’ve never ever experienced before that are kind of leading your body to stop working?

Speaker 1 29:13
Yeah, that was quite frightening, but to it, it’s kind of like the first sign I got was the rumbling in the hands, in the ears and the tingle in my palm, that was the first sign, but you know how we often as people, get these little twitches, like you might go in the back in there go ‘What was that? And you kind of, and you don’t question, like ‘Oh, I don’t know. And just carry on, it was kind of like that. That was the first sign, and then as it was, as I was beginning to as the stroke was taking hold and sort of, I guess, swiping watching through me.

Antonio Iannella 29:48
It just felt like I was, I didn’t know my own self. I just was losing control of my whole body, it just become like jelly in minutes. So and, but of it for a lot, not a long time, but for the first few days, I just thought something was just going to be okay, I don’t know, I had this kind of naive sensation that I’ll be right, I’ll be fine, it’s probably just a bug.

Antonio Iannella 30:15
You know, the first thing I thought was I’d been bitten by something because I had the day before, we had been cruising through the the Mekong River, through some of the little villages, and something bit me on the foot, and I just thought it was probably just that a really a reaction to that number, okay, but turned out it wasn’t. So it’s quite, it was really frightening, you just losing control of yourself is just well.

Bill Gasiamis 30:45
And it was an AVM, wasn’t it?

Antonio Iannella 30:46
Yeah, AVM like you have had, which we discovered when we met, that we both had AVMS. And prior to that, people don’t know what an AVM is basically, it’s a weak vein in part of your brain that ruptures and bleeds. Generally, it’s just from a malformation you’re born with it, and apparently, statistically, so heard between the ages of 30 and 40 is when they’re most prone to bleed.

Bill Gasiamis 31:16
Yeah, that’s so many people I’ve interviewed with AVMS in that age bracket, which is so weird that they all kind of have this shitty timer that they’re all set to kind of go off at around that time, like, it’s so strange.

Antonio Iannella 31:32
And there’s no scientific I guess, statistics to show why or explain why this happens at that age and like when, when it happened to me, and that first thing they did were checking out is they check your vitals and check your blood pressure and your blood sugar and your heart rate and all that, and everything was fine. I had no pre previous health condition, and it wasn’t until they discovered after MRI that had this.

Bill Gasiamis 32:05
Was the MRI in Vietnam? Or did you have to get to Melbourne to get that?

Antonio Iannella 32:10
No, the first one, I had many, but the first one was in literally within an hour of getting or not even my memory is quite vague, but when we arrived at the hospital. I think we’re straight into the hospital, and next thing I know, I was in having a navy I don’t even remember the MRI, but I just remember, like, being wheeled through parts of the hospital, and I remember the two orderlies who were pushing my my bed.

Antonio Iannella 32:38
They were speaking in Vietnamese, and I couldn’t work out where I was, I couldn’t understand them, I couldn’t work out it was because I was speaking in Vietnamese, or was it because I couldn’t understand it? That’s all I remember.

Bill Gasiamis 32:57
You’re in a foreign country, we know what Australia’s medical systems like.

Antonio Iannella 33:03
Its world class.

Bill Gasiamis 33:05
It has its limitations, but it’s world class, right?

Antonio Iannella 33:08
Absolutely, it is really, really good.

Bill Gasiamis 33:09
Yeah, and if you live in a city, you’re really confident that you’re going to get amazing health care, but when you’re in Vietnam, that’s not so certain. Was that a concern? Something that was on your mind as well, or how do you manage that whole idea?

Antonio Iannella 33:26
I can’t say it was on the forefront of my mind, there wasn’t much in my mind, apart from a panic, fear and distress and just what I was, I kind of felt like I was just holding on, holding on to life, so just some wasn’t slipping away. There was, there were a few things like they couldn’t the nurse couldn’t get the this is one of the first days in ICU. The nurse couldn’t get the intravenous line into my vein, and I remember they were just trying to get it in, they just couldn’t get in, they ended up putting it in my neck.

Antonio Iannella 34:01
So there were things like that and, and if I’d asked for something, well, I could just speak, but if I’d asked for this, they’d bring me something else, or if I’d asked for a drink, they would fix my bed sheets or, you know, so there was a bit of that going on, but what they may be lacked in medical practices, they made up in care. They really cared for me, they were kind and sweet, and even the doctors, all the doctors were French, because during the French invaded Vietnam hundreds of years ago, so they have a big hold on France.

Antonio Iannella 34:42
It’s a lot of Bill on Vietnam. There’s a lot of buildings that were built during that era of their reigning in Vietnam. So there’s a there’s a heavy French influence. So the hospital was called the Franco Vasco Hospital, which is a French name, and the doctors wore French, in the ICU ward. So they, not only that, we had Vietnamese nurses and staff, but French doctors who didn’t speak English.

Antonio Iannella 35:16
So there was just another layer on top of that, and they just barely could, they few words here and there, but they really looked after us. Under those circumstances, we’re in a foreign country, three young children, their mother myself and they looked after us, they did.

Bill Gasiamis 35:36
How far into your trip were you when it happened, and how long did it take you to get home?

Antonio Iannella 35:42
Well, the day before the ninth day we’re coming home on the 10th day happened the last the day before departure, and it was on our last trip, which was to visit the underground war tunnels that were built during you know more. So yeah, we got to have the whole holiday, and did everything, and went on some amazing cruises and villages in the Mekong and, yeah, some beautiful little towns. So we had an amazing time, which kind of was wiped out after having a stroke. So that all just slips away, and you forget about it’s not two months later, you start to ‘Oh yeah, we’re in Vietnam.

Antonio Iannella 36:22
Remember that Bucha? Wow, that was amazing. So it was a bit like that, you know, but, yeah, so it was literally at the end of the trip, and there was no sign at all that I was, you know, not no headaches. Oh yeah, there was a headache. I wrote about that in the book a few days prior, I had this headache, or the day before the stroke, I had a headache, and I thought maybe that was it, but you know, as you learn AVMs, they don’t leave much of a trail.

Bill Gasiamis 36:53
I had one massive headache about it was November 2010 it was about a week long, ridiculous headache, I went to hospital, they did a lumbar puncture, they checked everything, they were looking for a bleed in the brain, and they couldn’t find it because they weren’t expecting an AVM. They weren’t looking for an AVM, and even when they scanned my head, they missed the AVM that was there and then.

Antonio Iannella 37:25
Hadn’t bled it yet.

Returning to Australia and Continuing Recovery

Bill Gasiamis 37:28
I reckon it was just playing up and just causing a little bit of irritation to the neurons and to the brain around there, it was terrible headache. Anyway, I went and we went home after, like, being in hospital for a day or so, for a day, and they checked it out, and then I was out cold on the bed for and on the couch for the next three or four days, and then started to finally, kind of settle down, and it took about more than seven seven or eight days to settle down, and that was the first sign for me, I think.

Bill Gasiamis 38:04
That was November 2010 and then the bleed happened in February 2012 It was about 16 months later that it happened.

Antonio Iannella 38:19
Although it might, it may be impossible, but did they connected to that? Were they able to say that could have been or I just don’t know, I asked and they didn’t connect it. Yeah, that they can’t, it’s too hard to work these things out.

Bill Gasiamis 38:31
Yeah, which makes sense.

Antonio Iannella 38:36
Did they say the bleed happened at the time you went to hospital, like the day before, or did they say the bleed that’s been there for, you know, like that little bleed has been there for a while.

Bill Gasiamis 38:46
When they found the bleed in Feb 2012 it was happening for seven days, because I didn’t go to hospital for seven days, like I knew that it was, you know, the thing you mentioned, you felt weird somewhere. I was feeling weird in my my big left toe, okay, and that was it just my little toe, my big toe, and then it spread to the left the rest of my foot, and thenafter, seven days it had slowly spread all the way up to my entire left side.

Bill Gasiamis 39:19
But I knew it was when they said you’ve had a bleed. Well, then I realized it started seven days earlier, but that was the first sign for me, other than that massive headache, how did they resolve your bleed, your AVM? What did they do to rectify that?

Antonio Iannella 39:37
Nothing, it just healed on its own, I did. They did look into treatment, but they first, the first thing was they couldn’t work out was an AVM for probably about a month because it was bleed, I had mine in my brain stem. Brain stems only about this wide, so and it wasn’t a massive bleed, but because it was a the brainstem and cause a lot of damage, but they needed, basically, I had two, I think it was a third MRI.

Antonio Iannella 40:10
They still weren’t able to work out why I had the hemorrhage the AVM. And it was an angiogram that was, they worked that out, but they basically said, because of the brain to them, I did go and see surgeons, they’re on few to surgeons and had some radiation treatment done, but it didn’t go well. So it was just, he just healed itself and it’s still there.

Bill Gasiamis 40:37
Okay, alright.

Antonio Iannella 40:38
And I remember we were talking about this, because you did end up having to treat yours.

Bill Gasiamis 40:43
Yeah, I had brain surgery. They took it out, and that’s the reason I have deficits today, is because of the brain surgery. So that, up until I went into the brain surgery, I would have said that my deficits were all kind of superficial, because the blood was in there and it was messing things up, right? But as the blood started to subside and go away, between bullied two and bleed three, which were quite a long, a long way away from each other, the all my neurological deficits went away because the blood started to subside the third one.

Bill Gasiamis 41:21
The neurological deficits came back, and then the surgery, because the AVM was deep in my brain, kind of to the center near the cerebellum. The to get there, I imagine they’re gonna move a lot of stuff around and touch stuff and whatever. So hard to imagine that, plus cutting, actually dissecting and removing the blood vessel, you know, there’s no doubt that they’re going to have to cause a little bit of damage somewhere.

Antonio Iannella 41:53
Because they said that, they said this may cause some damage.

Bill Gasiamis 41:58
They did say that, they also said the whole you might not wake up from this, and the whole lot, right? And then when I did, and then couldn’t walk, and at all, my left side was completely gone, my arm and my leg and and all that, they were just matter of fact, I can’t get him into rehab, that was it, that’s what they said. So I did as much rehab as I needed to be able to get to the toilet independently, and maybe make a cup of tea and have breakfast, because my wife was at work and my boys were at school.

Bill Gasiamis 42:35
So the one I’m what they were keen on was when I was at home, that I was going to be able to get around the house without being a risk of falling. Which almost worked, I fell a few times, but most of the time get it okay, I was okay. So, they removed it, and they’re the deficits I live with today, and it’s on my left side, it’s still numb. I can walk, and I can use my arm some.

Bill Gasiamis 43:03
Sometimes I get, like, spasticity in the muscles, you can’t see it in my hand, I don’t have like, visual signs of spasticity, but I have tone, like ‘Okay, yeah, and it really hurts. And then sometimes that throws out the rest of my body, It’s a big mess, you know, and then massages, and then there’s a rehabilitation process to get me feeling well, not balanced, because I’ve never felt balanced since, but somewhere on the verge of it

Antonio Iannella 43:31
So close to it, yeah.

Finding Purpose and Joy in Life After Stroke

Bill Gasiamis 43:33
Yeah, and then, like, if I have bad days, then I sleep rough one night, then the next night, the next day, is a bit of a challenge, and it’s definitely harder to get through, but these patterns I’ve recognized so like you, I know how to navigate them, and they impact me less, they make it, it’s not as hard as it used to be.

Antonio Iannella 43:55
Yeah, that’s what happens. It’s kind of it’s it’s forever unfolding, I find as well, because I find it really difficult to separate fatigue, or am I just feeling tired because I didn’t sleep well? Or is that the stroke? Is that headache related to this? Or is it now I just, I just ride all those feelings, and at the beginning I’d panic ‘What was that? And, you know, there’s, there were times I’d be rushed in the hospital, and it just turned out I was having a panic attack.

Antonio Iannella 44:27
And so as the years go on, you start to recognize and realize ‘Okay, to that, and it’s just that, it’s probably this, so I’m okay, but just the other thing I was going to say, you can’t separate the mind and the body and the spirit, and it’s like you didn’t sleep well, and affects you, and you see your hand cramps up, and then it affects other parts of your body, that happens to me too, like, it’s just whole experience.

Bill Gasiamis 44:54
It is the whole system. You were a musician too, right? And you still are, I know, but initially you’ve had the stroke, you’ve come back, there’s time in rehabilitation. You come back to some kind of home life, and you’re not able to participate the way that you did before, in your band and in music, and your identity is impacted massively. What’s it? What was that like?

Antonio Iannella 45:24
It was heartbreaking at the beginning, really heartbreaking because I’ve been a guitar player for on time since I was a teenager, and that really hurt. It still does sometimes, but I managed to find ways to make music one handed on the piano, and it was really because I wanted to compose, and so I transferred what I knew about music onto the piano one handed, and was able to make music, and then once I discovered that process, it was just like someone opened the flood gates with ideas.

Antonio Iannella 45:59
Because it just really, just went, wham, I produced so much music that I never thought I’d be able to do that in, you know, in my late 30s. So, yeah, it was just matter of finding a new way, and that’s just for me, it was that, but I think for most stroke survivors, it’s just finding a new approach. We saw we first, one of the first things we spoke about was adjusting, a lot of the recovery is about adjusting, finding new ways, not necessarily getting back to how you did it before, but now going.

Antonio Iannella 46:35
Okay, I’ve got these skills, and I can, like for me, I can make music, and I’ve written lots of music and played in bands as a guitar player, and used to gig and do all that stuff. I can’t do that anymore, bro, I could, I still know music, I can still hear music, I can still compose. So I just started turning all that into and finding new ways to sit at a piano and make up melodies, and then built a studio and got into music production. So, yeah, I just found a new way to make music, and now just keep doing it.

Bill Gasiamis 47:09
Yours are transferable, right?

Antonio Iannella 47:11
Exactly, yeah.

Bill Gasiamis 47:12
Properly transferable.

Antonio Iannella 47:13
Yeah, and that just music is just that example for me, but it could be something else for you. You know, maybe you love to knit, and all of a sudden you can’t do anymore, but you could, somehow invent a system where you do it with one hand and, yeah, so it’s really about thinking outside the box.

Advice for Other Stroke Survivors

Bill Gasiamis 47:31
Yeah, you know, in those really difficult times, what was it for you that helps you kind of keep pushing on and pushing through, I know there was those days where, you know it’s like you wanted to give up. You mentioned it earlier, but you didn’t what was behind not giving up, other than just clinging to life and wanting to be alive and all the usual stuff. Was there something more deeper that helped you kind of keep going?

Antonio Iannella 47:58
Yeah, I think it’s part of my spirit to be a person who does that. Is just to keep trying and having resilience and discipline. It’s part of who I am. But also, I’ve had young children and seeing them, having to go through that, having to see that, I would often think about, I remember in when I was in ICU, I would think about how they wouldn’t be feeling, you knownot only me, because they’re just, I can remember them, just beside my bed, and their little heads would pop up.

Antonio Iannella 48:32
And their mother had to lift them over the rail to give me a little kiss ahead, or whatever. So those that was, just holding on to that, and I need to be there for him. So that was one of the keys, and another thing that really, I guess, kind of gave me, I guess, motivation and inspiration was people just the way that they showed how they cared and stepped up and did things for us. Little, little might be little things.

Antonio Iannella 49:03
But one of the examples was the head doctor in ICU, his wife, French wife, took my daughters out with her for a day, and her own daughter just for a day out swimming. So just little things like that. And, you know, come as in ICU, and I’m being told this stuff, and I was, I could still remember feeling completely humbled by that. So those gesture, those kind of things kept me going.

Bill Gasiamis 49:33
Yeah, you if somebody met you today, they would definitely know that you’ve had some kind of an injury somewhere, right? But they wouldn’t know that it’s been a 15 year journey, and they might kind of gloss over, especially if they’re not stroke survivors. They might gloss over some of the hard times, and in amongst there, there was small victories, right? Tell me about the the small victories. What were they for you? Which ones, the were, the ones that were significant? That were small, perhaps in in somebody else’s mind, but were a big deal to you.

Antonio Iannella 50:09
One of the most, the high there was, there was a lot of little milestones, I speak about them in the book, and that I’d seen that big, but for me, though massive wear because I couldn’t sit up. For example, if I was in I was at the beginning through my recovery, I didn’t have much control over my body, and I didn’t have enough core strength to help me to sit up, so my body would just crumble and roll to the side, and then once I was able to sit up, and I started getting a little bit of function, I got function back to my right hand, and they were like, once I did that.

Antonio Iannella 50:45
I kind of, it was like, it was such a revelation, because I’m like ‘Oh, I can do this. They were the first tiny little glimpses of hope, because suddenly I went from only being able to lay flat in my bed to being able to sit in the arm chair by the window, and it’s not a big deal, but to me, it was like ‘Wow, look what I’ve done. I was so proud of myself. And then it was just, just continued on and went from that, and then I was able to get out of bed, from the bed to the wheelchair, and you have to be airlifted out of the bed anymore.

Antonio Iannella 51:24
So there was those things, but the one of the biggest things was the first time I walked, and it’s I write up quite a lot better in the book, because it was on my birthday. In fact, on my 39th birthday, and I was just in the ballet, in those gymnasium rails, and we’d been doing physio, and I don’t know if my physio, she was marvelous. She was she was so great at her work, and she just gave me that opening to let go and walk, and I let go of the rail, and I walked for about 10 steps, and I did it.

Antonio Iannella 51:55
So it was one of those moments like I couldn’t believe and I grabbed hold of rail, I turned around and she was smiling. So yeah, that those things like that, and that those two, but that’s quite a big milestone, and when I tell others that story, it’s quite anyone can connect today. Another one was getting back to driving, that was such a mission, and I was, and I was able to do within about 10 months, and it was just because I was just so determined, and I remember my physio like, I’d be like ‘Alright, I want to drive. Like she’s gone.

Antonio Iannella 52:30
‘No, no, no, and you can’t drive too early. Go, okay, no, I want to drive. Christmas isn’t coming up. I want to drive. She’s going, but maybe next year, you’re not ready, like she got and plus, it takes about two months to get, there’s a two month waiting list to go on the driving program, and I’m like ‘Put my name down, put my name down, If I fail, then I know I’m not ready. And so she put my name down, and somehow I got to the top of the list.

Antonio Iannella 53:00
As they say, it’s not what you know to, got to the top of the list, and I had to go my license, had a crack at it, had a couple lessons, failed, then went again, and I got it. Just like a week before Christmas, I got it. That was my dream, I wanted to get it for Christmas, and I saw ‘Wow. And it was just such a, such a great moment, you know, especially when I just did the driving test and get back to the hospital, and I turned around and the driving instructor, and the person does, the examiner, just seated it back.

Antonio Iannella 53:30
She didn’t say anything. I just turned around and, look, don’t you just smile at night, and I just didn’t have to say your past. I just knew, so such a great moment. I felt like I was, you know, when you get, remember, when you got your license for the first time? I felt like that, but I had my car already bought myself a little car, so I didn’t have a car at the time, and driving.

Bill Gasiamis 53:52
You’ve had that. Just got my license moment twice dinner.

Antonio Iannella 1 53:55
Yeah I had it because it’s a rebirth, isn’t it?

Back To Driving After A Stroke

Bill Gasiamis 54:00
Yeah. It’s ridiculous. how important that is, and makes complete sense. Were you? Did you lose your license when you were examined in Melbourne and went through all the stuff? Did they take it from you? Or was it just that you can’t drive?

Antonio Iannella 54:16
It was not suspended. But when you have a medical episode that’s related to the brain, like a neurological disorder, you have to either be tested or you’re suspended until Doctor report stuff like that, because there was quite a few hurdles. I had to get a doctor to report medical report, vision report, driving test. So it was quite, quite a process to go through.

Bill Gasiamis 54:39
I don’t know what happened with me, but they missed all of that stuff with me, I didn’t ever have mine suspended or lost or anything, and I remember not being being kind of under doctor’s orders not to drive, but I drove anyway. It wasn’t official, and I never got the ‘You can now drive conversation. It was just like, I suppose I can drive now. Like, yeah, I don’t know what the deal is. So I just did, and it was really hard, it was so fatiguing and it was so challenging. What was it like for you, even though you drove? What was it like neurologically?

Antonio Iannella 55:19
Yeah, everything you just said absolutely, because by it, what a lot of people don’t understand about people with stroke who have had strokes, stroke survivors, is that the cognitive function to process information is just so exhausting. So when you’re put in a position where you’re driving a vehicle and you’ve got a lot to think about, it’s not like you know the subconscious mind normally, when you drive, the sub subconscious mind takes over, you notice that, once upon a time, used to drive somewhere and you don’t remember getting there.

Antonio Iannella 55:49
You just all you remember is you’ve gotten there, you don’t remember you went through anything. Did I go through those? You can’t remember when I found for the first few years, the conscious mind was driving, I was thinking, always thinking about it, the conscious about the traffic, about and it’s so exhausting. Because when, when that part of the brain is working over time, all the time, it’s really draining. So yeah, I found it quite and now I still find it, you know, anything over a few hours is a bit difficult for me.

Antonio Iannella 56:22
My time driving, yeah, I struggle with, I try and avoid it, but it’s, it’s not too bad, mainly because I’ve got vision. My vision isn’t the best due to my stroke. So that’s having a lot of problems with this eye and the reflective light. So for about five years, I could do a medical and vision report every year after my license, and then five years later, I get a letter to sayyou don’t, you need to do any more medical reports.

Bill Gasiamis 56:53
They’re probably tracking the condition, whether it was stable or yes, changing something like that. You know, when you left Vietnam and came back, what was that trip like? Actually, were you with your family? Was that a medical evacuation? How did you get home?

Antonio Iannella 57:10
It was a rescue flight. It was a coordinated rescue flight that my daughter’s mother arranged without my knowledge, with a service that provides those kind of things, she was able to source that information through the hospital, and then it was a massive fee to get us, to get us home, no insurance, COVID, and it was a first what happened was they appointed a doctor who for the few days leading up to the flood, or a week, and they just monitored me and check if I was healthy enough for the flight, and at that stage, I contracted pneumonia.

Antonio Iannella 57:49
So I was not only dealing with stroke, also had pneumonia, and they were just a bit nervous about the whole the pneumonia, and the thing I don’t know why, but their process was, once the flight is booked and the service is scheduled, there’s no turning back. You can’t you basically, if you cancel the the the arrangement you don’t use your money.

Antonio Iannella 58:15
Get billed for it anyway. So we had to go, and so I was flown back with a doctor sitting beside me and a nurse, and the nurse, the doctor, literally slept through the whole flight, and the nurse just looked after me, he was a champion, he’d cool my body temperature when I was born, because my body temperature would escalate and then drop, and then I’d be freezing cold and again, you’ve got no complete control of it, and this person’s is basically your life saver.

Antonio Iannella 58:45
It’s like they’re looking after you, make sure you don’t die, that was his job. So, yeah, I don’t know if I’ve told you this, they had to get me off the airplane, they had to wait for all the passengers to get off board, and then they the airport had, Melbourne Airport had to get a cherry picker, kind of like a cherry picker, to escalate me down from the from the airplane or to the tarmac, and then there was an ambulance there waiting for me and into the back of the ambulance and straight over to the hospital, big process.

Bill Gasiamis 59:19
They’ve got that system in place for all medical emergencies. I imagine when people pass away on an airplane as well.

Antonio Iannella 59:26
Yeah, yes. So that’s what it was.

Bill Gasiamis 59:32
So the kids were on the flight, your wife was on the fly at the time, everybody was on the flight together.

Antonio Iannella 59:37
Yes, they were on the flight, but they were sitting at the back, I was in business class, and I see it up back, and they just, but they had like, they would come up and visit and drop, coming up and say hello, give me kiss and stuff, and then once we got to Melbourne Airport, they went through departure, returns and all that as per normal, and then I met them at the hospital.

Bill Gasiamis 1:00:02
It’s pretty shit way to get into business class.

Antonio Iannella 1:00:04
Yeah no, that was my first business class experience, and yeah, didn’t get to sip champagne or anything like that, I was just clicking on to life.

Bill Gasiamis 1:00:19
So then from there, from the airport straight to hospital.

Antonio Iannella 1:00:22
Yep, by that stage, I was starting to like, my awareness was beginning to realign itself, I was beginning to understand things. my speech was slowly starting to come back, but I had no control of my body like I did have some function to my right hand, I hadn’t tried to stand up or anything like that, but yeah, so I could, I’ve become aware of what was happening.

Antonio Iannella 1:00:48
So things become quite vivid by that stage where I knew, like, I can remember that, been in the ambulance, that the doctor talking to the paramedics. I can remember, being in the waiting room, or not in the waiting room, but in one of the rooms at the hospital, the first few doctors I saw. So I remember all those bits.

Bill Gasiamis 1:01:09
My books about post traumatic growth, basically, right? That the topic, the the heading, doesn’t suggest that specifically, but that’s exactly what it’s about post traumatic growth, which is the idea that we can find meaning and growth from trauma, right? I know the stroke changed you in many ways, right? Can you reflect a little bit on how it’s changed you, emotionally and spiritually for the better?

Antonio Iannella 1:01:42
Yeah, spiritually, I feel like I’m a little bit more at peace with who I am, and I think that’s come with having the break released in terms of trying to keep up with society stepping outside, and I use this reference where I was no longer on this speeding train, I’m on the platform and watching everyone just flash by. And at the beginning, that was horrifying, but then I began to appreciate it that I could I had time. Time so valuable, everyone’s so busy and no one has time. Everyone says ‘I’m sorry.

Antonio Iannella 1:02:22
I’m so busy I didn’t have the time to do that, and I didn’t have the time to do this, and next thing, you know, five years have passed and you’ve not done anything because you didn’t have the time. So I began to see that as a bit of a reward. The analogy I use is it was like the golden ticket behind the adversity, the silver lining, and that’s where it changed me spiritually. I began to enjoy that free space, that free, conscious space where I could just think and create and write and make music.

Antonio Iannella 1:03:03
Line the sun and spend, you know, two hours of my morning sitting on outside and the grass and just things like that. I began to see that so much value in that. So that’s where that changed for me, that spiritual, emotional level, but I also found it as well. I’ve always been a quite emotional person, but I also have found that sometimes my emotions can get away from me, like I see things that are painful, especially when others are going through difficult times, and then I find that hard to process.

Antonio Iannella 1:03:37
Because, you know, I think it reflects on having been through that hardship that resonates so that empathy, empathy. I try these techniques on ‘Okay, don’t cry, don’t cry, don’t and I try and squeeze it up and suck it in and then, like I had this friend, and she’s the sono. I told her about it, she’d say ‘Just cry if you want to cry, don’t why hold it back for and I guess you know society, many boys don’t cry, and we have that. So yeah, that that’s changed me a lot. Yeah, so the emotional stance and spiritual sense, and obviously, also the physical sense.

Life After Stroke And The Pseudobulbar Affect

Bill Gasiamis 1:04:23
You’ve earned, the ability to cry at a drop of a hat for no reason if you feel like it, I am, I do, and I get teased like my wife tears me, and it’s all part of the whole thing, right? Oh, are you crying because your team won a game or lost a game, or what the hell like. You know, she’s like and and it’s what it is, I think for me, a lot of the time, it’s like joy expressed outwardly in every way, right? It’s like, it’s not sadness. When I cry, everyone asks me. Presenting my book in the book launch, I wasn’t crying. I was trying to present it to 40 people, right?

Bill Gasiamis 1:05:09
I was trying to have this 20 minute speech and talk about my book and all that kind of stuff. I wasn’t crying out of any anything other than like, pure, unadulterated joy.

Antonio Iannella 1:05:18
Yeah, elated.

Bill Gasiamis 1:05:20
Yeah, and there was so much of it that I cried four times during the during the presentation in 20 minutes, that’s like ‘Oh my god. It gets in the way, it’s getting in the way, but it’s also part of it. Like, you can’t, I can’t. I couldn’t have done that without the crying experience, it’s just gonna have to what do you do?

Antonio Iannella 1:05:43
I bet you is self critical more than anyone else judged you by that everyone else.

Bill Gasiamis 1:05:49
Correct, and I’ve stopped being anyhow, right, like I’m no longer self critical about it, but I am still all right, you get over it now, because you got to finish your presentation like it’s business. You know, move on. So there’s a bit of that, it sounds like you’ll had a completely new perspective on life, right? Things are you see things totally different from Antonio at 38.

Antonio Iannella 1:06:15
Yeah, I do. What I have really enjoyed is the pre-Antonio, the person, not so much the years leading up to the stroke, but maybe when I was in my 20s, and I was working in as a musician, and living that, having that perspective of, you know, just everything was about creativity and and and just in the moment of enjoying the craft. And it’s a kind of a form of yoga, it’s kind of like meditation, because you It’s what it’s those moments where you just completely filled in the moment.

Antonio Iannella 1:06:51
And it’s like when sportsmen, you know, you some of the great sportsmen, you watch them play in the you know, they’re just in the moment, they’re not thinking about something else, and that’s sometimes when they get into that flow state, that’s when they can play that their greatest and that’s the same with music. It’s just all creativity and having gone through a stroke and enabling me to get back to that, that’s been a massive growth period for me.

Antonio Iannella 1:07:18
So I feel like I’m back on track to who I was, for a little while, I went off track, and now I’m back, and that’s why they’re still saying that full circle, that’s what I mean by that.

Bill Gasiamis 1:07:30
In the previous interview that we did, I never used to ask these questions, but now I ask probably, in the last six months or so, I’ve started asking these three questions from everybody who I interview, who’s a stroke survivor. So I’d love to know what was the hardest thing about stroke for you.

Antonio Iannella 1:07:50
The there was a few episodes. I think one of the most scariest was the radiation treatment. The whole process of having my brain fried by radiation was quite frightening, that it made me feel quite alone. Because you you’re going through this experience, or while I was going through it on my own, and you rely on doctors and to advise you, and they don’t, do you know? And there was always that cloud of we don’t know, they couldn’t just give you a straight answer.

Antonio Iannella 1:08:21
This is what’s going to happen. To say you’re going to say you’re going to feel so there was that that was quite scary moments, difficult moments, if you asked there was that. There was the that time in ICU, not knowing whether I was going to survive, and then learn, as you go through those early stages, and learning about stroke, and you’re hearing, you’re reading some stuff about statistics and how many people survive and how many don’t, and that’s frightening.

Antonio Iannella 1:08:47
And then there’s and then, yeah, those few episodes are having an angiogram. Have you had an angiogram? That was really horrible.

Bill Gasiamis 1:08:59
That came out really emotional out of my one, really emotional.

Antonio Iannella 1:09:05
I ended up having three, and I really didn’t enjoy them. But sometimes you know what you’re in for, like, you know, especially after my first one, and then I had a second, a third, I knew what I was in for, but I kind of went in with that mindset of for it, right? Just bite down and just get through it.

Antonio Iannella 1:09:25
You’ll get out the other side, and you just go in there, like, holding on for dear life, and all right ‘This hurts like hell, and, oh yeah, I’m gonna vomit. And then you’re okay, and now later you’re okay, you’re coming too. So that’s kind of how I dealt with those experiences.

Bill Gasiamis 1:09:42
Now I remember the angiogram going and getting prepared for it. So they were preparing me for an angiogram for about five days. So what would happen is morning of day one, no eating, etc, from the night before you’re going in for an angiogram. Okay, cool. So I’m waiting, waiting, waiting, waiting, waiting. So one emergency after the other, after the other meant that I get kept putting, kept getting pushed back, and I didn’t have the angiogram. So I’d go from the night before dinner, the night before to any time that the next day, you know, almost 24 hours with no food.

Bill Gasiamis 1:10:22
And I’d be starving and thirsty, and I’d be losing my mind, and they’d be going to me now, you’ll be going in soon, you’ll be going in soon, and then I’d be going what we missed the window. You’re not going in today, go and get something. And then I’d be gorging, and then the next day, and then the next day, they did it for about three days or four days in a row, and then eventually I had the angiogram, and they come in, they tell you, it’s going to go in through one of your main veins.

Antonio Iannella 1:10:51
Aorta, goes in through your aorta from your groin, through the main the aorta is the main vein that feeds blood to your heart and your brain.

Bill Gasiamis 1:11:03
And then it’s like ‘Okay. And then they squeeze the dye, or whatever it’s called, the contrast.

Antonio Iannella 1:11:13
Oh my God, that’s horrible, did you feel dizzy?

Bill Gasiamis 1:11:15
Yeah I felt dizzy. I saw actually, like, sparkles, like, fireworks going off in my head, like it was intense.

Antonio Iannella 1:11:24
Yeah I remember that feeling.

Bill Gasiamis 1:11:25
I could actually see it in my eyes, I could see it in my eyes that fireworks were in my eyes. In the room while my eyes were open, there was just my whole vision field got overtaken by sparkles or fireworks.

Antonio Iannella 1:11:39
You just, it’s like you just lose complete sense of self. I remember that just feeling like you’re in this dark hole and you don’t know what’s going on, and you spit in, yes, really quite a horrible feeling.

Bill Gasiamis 1:11:52
And then the nurse later in recovery, holding your artery for what felt like an eternity, because they once they take it out, they gotta hold it and close it up, make sure that it seals, right? Yeah, so that you don’t bleed out. Because they tell you ‘Sorry, we’ve gotta do this now for the next x time. I don’t, I can’t remember what it was like a long time, and the story going, if we don’t do it, you could bleed out and die. And I’m like ‘Okay, I didn’t say, don’t do it, go for it, you guys do whatever you have to do.

Antonio Iannella 1:12:32
Well, that’s a quite a big build up three days to the mine was only one night, only one day, 90 for a day and then, that’s quite 12 hours or something I had to fast for.

Bill Gasiamis 1:12:45
So they got me, I’m all wound up over it every day. But anyhow, what’s something that stroke has taught you?

Antonio Iannella 1:12:56
I think I’m still learning, and that is to kill the effing out, because, like, they were talking about this briefly, about publishing a book, the amount of work involved, and all the boxes you got to tick and make sure you got this right. And they got so stressful, and I’ve got it, it’s done now, and it’s published and I kind of woke up today, and I was talking to a friend who lives overseas, and she’s going through some hard times, and I just went that stress was just, why do why do I do that for? Why do I stress myself like that for.

Antonio Iannella 1:13:34
Because, you know, you’re going to get to the other side. So I think I’m still learning that, but that’s a massive learning curve in in generally, in life, is just the children chill out and, you know, try not to let those things that you know, because I think it’s been a psychologist have said something like 92% of our fears and thoughts and worries don’t even come true surface. So, you know, that’s what I found.

Bill Gasiamis 1:14:03
I’ve been learning, that’s a good one. What do you want to tell other people who are listening all stroke survivors listen to this podcast, like, what do you want to tell them about your journey, about your experience, about anything that you just feel is going to be valuable.

Antonio Iannella 1:14:24
I think what I would say is, you know, through my own experience, and everything I talk about is through my own experience, and for everyone, it’s different, but through my own experience, what has helped immensely is finding some kind of purpose, and another thing that helped was because all the recoveries built up around trying to get back to who you were trying to recover, recover, recover. And I really think that I until I let go, that I really. Start living so that’s really but I’m not saying that you should not try and get back to who you were in terms of with your recovery.

Antonio Iannella 1:15:09
Statistically, something 88% of people who have strokes lived with lifelong disabilities. So there’s that 12% whoever, whatever happens to them that I don’t know, but the 88% we are solely focusing on trying to get them back to who they were. So that’s an awful amount of people who are not achieving that. So I think maybe just trying to find something for yourself that brings you joy and wakes you up in the morning, and it enables you to not feel like you’re a victim.

Bill Gasiamis 1:15:43
Yeah, that’s cool. And purpose is not head-based, right? It’s not, you’re not going to work out what your purpose is in your head. It’s something that you gotta do. It’s about what you love to do, or what connects you to other people, etc. For you, your purpose, what is it?

Antonio Iannella 1:15:58
It was really just creativity, spreading, spreading joy. I think, through my own story and my own creative advantage, because a lot of the things I create, music, writing, it’s all related to, I guess, making people feel like I’ve been able to do it, and I have a disability and I have limitations, but I’m have still been able to do it. So the general message, that’s takeaway from that is, there are you can still do things. It’s just a hard stock to try and work out what that is and how to do it, but it’s possible.

Bill Gasiamis 1:16:37
And then purpose kind of gives you meaning, right? Meaning in life.

Antonio Iannella 1:16:40
Yeah, and it doesn’t have to be like, all of a sudden you’re going to go on Mount Everest. It could be such the smallest little thing you might like scrapbooking, or you might like, you may have been a complete football nut, and now you can collect statistics and create some kind of information. I know you just, you need to really just find something to do, and because, you know, everyone needs purpose, it’s the thing that drives us as humans and beings.

Antonio Iannella 1:17:08
Why do we go to work? Because ultimately, we have a purpose, and that is to bring money home and able to maintain lifestyle and pay our bills and raise our family. But that’s the purpose, if you remove the purpose problem done, we would go to work. What would be the purpose? So we need to remove that, I feel, remove that, and just do it solely because it’s something that brings you pleasure, joy.

Bill Gasiamis 1:17:34
Yeah, beautiful. Show me the book again, and while you’re doing that, where can people get a copy.

Antonio Iannella 1:17:42
This is the book. It’s the easiest way to find it is on Amazon. If you go straight to Amazon and just typed in Saigon Siren, it would just bring the book straight up. That’s the easiest way to find it, but yeah, there I have also built a website, so that’s another way you get and through the website, you’ll be able to listen to music and see some photographs and video of the trip in Vietnam and some of the journey, the writing and stuff like that.

Antonio Iannella 1:18:15
There’s a couple of sample chapters on my website, so if you know, want to sort of get a feel about what the book is, how it’s written, the voice, the tone, you’ll get that through those chapters. They’re the best ways to connect with it.

Bill Gasiamis 1:18:30
Awesome and what is the website?

Antonio Iannella 1:18:35
It’s just my name, so it’s antonioiannela.com.au, yeah, like said, If you Google just recently, the website’s only gone up about a month ago, and I’ve been learning about SEOs and all that, and I discovered if you type in Saigon siren in Google, it’ll bring up my website in that search, it’s like in the listing. So therefore you’ll be able to and I spent a lot of time with a good mate of mine building a website.

Antonio Iannella 1:19:06
It’s very immersive, there’s a lot of pages, you’ll see my recording studio, lots of the music that I’ve created over the years past, pre stroke, post stroke, been quite a few projects. Some of the the writing and it’s been a lot of fun putting it all together, a lot of stress, a lot of hard work, and my me and my best mate, Rick, we’re going to kill each other on one point, but we got through that. Let’s come together.

Bill Gasiamis 1:19:31
That’s awesome, man. The links will be in the show notes anyway, for people who can’t remember that or have access to recoveryafterstroke.com/episodes, that’s where you’ll find Antonio’s episode, and then from there, they can reach out to you directly, and they can have a conversation if they need to mate. It is my absolute pleasure to have you back on the podcast to be helping you launch the board is something that is a great honor for me.

Bill Gasiamis 1:20:03
I am so excited that you’ve got there, and I witnessed the majority of your recovery from a distance, but you know, through regular updates and conversations and that. So I really want to just say congratulations on well done. It has been a massive undertaking to get to release date, because I know what came before the book. So thank you. It’s an absolutely amazing thing, and it’s the whole purpose this podcast exists because what I want to show other stroke survivors is the fact that the journey might be long, but things can get better.

Bill Gasiamis 1:20:43
Things can improve, great things can come of it. You can overcome so much more than you think that you can overcome. You’re a perfect example of that, you’re leading by example, you’re such a great example of that. Thank you, and just congratulations.

Antonio Iannella 1:21:01
Thanks, man. I’d also like to say, you, people like yourself that are doing what you do and making us strokes have always feel connected and introducing us to a world of we know such a such a minefield when you have your stroke. And I remember my early days and and how difficult it was, and now with some of the stroke community groups that I’m involved with and some of the posts that I read about people who are just entering into stroke.

Antonio Iannella 1:21:30
And I just I read them with such a heartache, you know? And so I know what that’s like, but people like you bring all of that together and just make you know that accessibility for all of us to just connect and go ‘Hey, you know there’s, there’s a way, there’s a way that we can make it work. So good on to you. Good to you, mate, good for you.

Bill Gasiamis 1:21:49
That brings us to the end of another episode, and Antonio’s journey of resilience, recovery and self discovery in life after stroke is a powerful reminder that even in the toughest times, there is hope and the way forward. His courage in adapting to life after stroke and his insights into emotional growth are truly inspiring. If you’ve found this episode valuable, or if the podcast has been a source of support in your own recovery journey, please consider supporting us on Patreon, at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:22:27
Your support enables us to keep bringing stories like Antonios to stroke survivors and caregivers around the world. Every contribution makes a difference, and I’m deeply grateful for each one a special thank you once again to our newest supporters. JK, Jolene Oh and Cecilia, your support truly helps make this podcast possible. Thank you to everyone who has left a review on iTunes or Spotify Your feedback helps others find the show and creates a community of encouragement and resilience.

Bill Gasiamis 1:23:00
If you haven’t yet, please consider leaving a five-star rating or sharing your thoughts, it means so much. Thank you for joining me today, and I look forward to seeing you in the next episode.

Intro 1:23:13
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:23:43
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Intro 1:24:07
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Intro 1:24:34
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

 

The post Antonio Iannella’s Journey: Life After Stroke – Overcoming Challenges Abroad and Finding Purpose appeared first on Recovery After Stroke.

Surviving an Ischemic Stroke: The Connection Between Ischemic Stroke and Hypertrophic Cardiomyopathy, and How Self-Care Can Help

An ischemic stroke is a life-altering event that occurs when a blood clot blocks the flow of oxygen-rich blood to the brain, leading to brain cell damage or death. It is the most common type of stroke, accounting for nearly 87% of all stroke cases. One lesser-known contributor to ischemic strokes is hypertrophic cardiomyopathy (HCM), a genetic heart condition that can increase the risk of blood clots.

But, how does hypertrophic cardiomyopathy lead to ischemic stroke? And what self-care steps can individuals take to manage this condition and reduce the risk of stroke?

What is Hypertrophic Cardiomyopathy?

Hypertrophic cardiomyopathy (HCM) is a genetic heart disorder where the heart muscle becomes abnormally thickened. While some people with HCM may experience no symptoms, others can develop serious complications such as arrhythmias (irregular heartbeats), heart failure, or the formation of blood clots.

The thickened heart muscle often affects how the heart pumps blood, leading to turbulence in blood flow, which may result in clot formation. If these clots travel to the brain, they can block an artery, causing an ischemic stroke.

How Hypertrophic Cardiomyopathy Increases Stroke Risk

Individuals with hypertrophic cardiomyopathy are at a higher risk for ischemic strokes due to several factors related to the condition:

1. Blood Clot Formation: As blood struggles to flow properly through a thickened heart, clots can form in the heart chambers, particularly if arrhythmias like atrial fibrillation are present.
2. Atrial Fibrillation (AFib): HCM is commonly associated with AFib, which causes the heart to beat irregularly. These irregular beats may cause blood to pool in the heart chambers, further increasing the risk of clots.
3. Reduced Blood Flow: Hypertrophic cardiomyopathy can impair the heart’s ability to pump blood effectively. Inadequate circulation increases the chances of clot formation, which can eventually lead to ischemic strokes.

Understanding this connection between hypertrophic cardiomyopathy and ischemic stroke is crucial, but more importantly, managing both conditions through self-care is vital for preventing stroke and maintaining overall health.

Self-Care for Hypertrophic Cardiomyopathy

Managing hypertrophic cardiomyopathy effectively can significantly reduce the risk of ischemic stroke. Here are some key self-care strategies for those living with HCM:

1. Regular Cardiologist Visits: Routine monitoring is essential to manage HCM. A cardiologist can track heart function, identify any irregularities, and adjust treatment plans as necessary. Monitoring heart rhythm with devices like a Holter monitor can detect arrhythmias early, allowing for timely intervention.
2. Medication Management: Many people with HCM are prescribed medications to manage symptoms and reduce stroke risk. These may include:
   • Beta-blockers or calcium channel blockers to improve heart function and reduce symptoms like shortness of breath.
   • Blood thinners (anticoagulants) to prevent blood clots from forming, especially if atrial fibrillation is present. It’s crucial to take medications exactly as prescribed and consult your doctor before making any changes.
3. Adopting a Heart-Healthy Diet: A well-balanced diet can reduce the overall stress on the heart. Focus on foods that are low in sodium and rich in fruits, vegetables, whole grains, lean proteins, and healthy fats. Limiting alcohol and caffeine consumption is also recommended, as these can exacerbate arrhythmias.
4. Regular Physical Activity: While heavy exertion is often discouraged in individuals with HCM, regular moderate exercise can improve heart health and overall well-being. Activities like walking, swimming, and yoga are excellent options. Always consult your healthcare provider before starting any new exercise regimen to ensure it’s safe.
5. Managing Stress: Emotional and physical stress can trigger arrhythmias or worsen HCM symptoms. Stress management techniques like meditation, breathing exercises, and mindfulness practices can help reduce stress levels, improving heart health and overall well-being.
6. Sleep Hygiene: Getting adequate, restful sleep is essential for heart health. Individuals with HCM should prioritize good sleep hygiene, including maintaining a regular sleep schedule and creating a relaxing bedtime routine. Poor sleep can exacerbate heart conditions, increasing the risk of clot formation.
7. Monitoring Symptoms: Self-awareness is key in managing hypertrophic cardiomyopathy. Pay attention to symptoms like shortness of breath, chest pain, dizziness, or palpitations. If these symptoms worsen or new symptoms develop, it’s important to seek medical advice promptly.
8. Atrial Fibrillation Management: If AFib is a complication of HCM, managing it carefully is crucial to reducing the risk of ischemic stroke. Medications, lifestyle changes, and even surgical options (like catheter ablation) may be recommended by a cardiologist to keep arrhythmias in check.

Preventing Ischemic Stroke in HCM Patients

For individuals with hypertrophic cardiomyopathy, preventing ischemic stroke requires a proactive approach to heart health. In addition to self-care practices, there are several other preventive measures:

• Regular Blood Pressure Monitoring: High blood pressure can further strain the heart, increasing the risk of stroke. Monitor your blood pressure regularly, and take steps to keep it within a healthy range through medication or lifestyle adjustments.
• Quit Smoking: Smoking is a significant risk factor for both heart disease and stroke. Quitting smoking dramatically reduces the risk of ischemic stroke, especially in people with underlying heart conditions like HCM.
• Stay Hydrated: Dehydration can affect blood pressure and increase the risk of clot formation. Be sure to drink enough water throughout the day to keep your blood flow steady and your body functioning optimally.

Conclusion

Managing hypertrophic cardiomyopathy is essential for reducing the risk of ischemic stroke. By understanding the connection between these two conditions and taking proactive steps through self-care—such as managing medications, maintaining a healthy lifestyle, and monitoring symptoms—individuals can significantly improve their heart health and reduce their risk of stroke.

Hypertrophic cardiomyopathy doesn’t have to lead to an ischemic stroke. With the right care, attention, and prevention strategies, those living with HCM can lead a healthier, more fulfilling life while minimizing their stroke risk.

Roderick Jefferson’s Journey with Hypertrophic Cardiomyopathy and Recovery

Discover how a near-death ischemic stroke caused by hypertrophic cardiomyopathy led to an extraordinary recovery journey filled with resilience.

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Highlights:

00:00 Introduction
01:55 The Early Signs of Stroke
06:38 The Out-of-Body Experience
13:07 Dealing With The Post-Stroke Deficits
17:13 The Survivor’s Guilt
27:41 Dealing With Emotions After A Stroke
35:16 The Pseudobulbar Affect
45:24 Changing Lives
55:41 Developing Empathy After A Stroke
1:03:33 Having The Time For Reflection
1:12:26 All Because Of The Stroke
1:18:14 The Hardest Thing About The Stroke
1:20:55 The Lessons From The Stroke

Transcript:

Introduction – Ischemic Stroke Hypertrophic Cardiomyopathy With Roderick Jefferson

Bill Gasiamis 0:00
Hello everybody, and welcome to episode 325, of the recovery after stroke podcast. I am your host, Bill Gasiamis, and today I’m excited to bring to you the incredible story of Roderick Jefferson, a keynote speaker and a stroke survivor who faced a near death ischemic stroke caused by hypertrophic cardiomyopathy. In this episode, Roderick takes us through his remarkable journey how he flatlined during his stroke, the profound experience of seeing his late mother and the miraculous recovery that stunned the doctors.

Bill Gasiamis 0:40
Roderick opens up about the physical and emotional challenges he overcame, including battling aphasia, regret, regaining his motor skills and confronting survivor’s guilt. His story will resonate deeply with anyone navigating stroke recovery and inspire those looking for hope. Now, just before we jump into roderick’s journey, I want to take a moment to thank all of you who support the podcast. A special shout out to those who leave comments on the YouTube channel every day.

Bill Gasiamis 1:13
You’re amazing, your stories insights and support creates a community that uplifts and encourages others. I’d also like to thank the nearly 50 incredible people who have already left five star reviews on Spotify, and the many more who have done the same on iTunes. Your reviews help other stroke survivors find the show, and they mean the world to me. If you haven’t yet, please consider leaving a rating or review as it truly helps others find this valuable content.

Bill Gasiamis 1:45
Roderick Jefferson, welcome to the podcast.

Roderick Jefferson 1:48
Thanks for having me, I appreciate it.

Bill Gasiamis 1:51
Absolute pleasure, tell me a little bit about what happened to you.

The Early Signs of Ischemic Stroke Hypertrophic Cardiomyopathy

Roderick Jefferson 1:55
So my stroke was about two and a half years ago. I am a keynote speaker. I was down in Los Angeles. I live up in San Francisco, Bay Area. So I was down in LA on a site visit, just checking out the place, getting ready for a keynote, and then I felt myself feeling really, really tired, not like I’d been working out too much, but a level of tired that I just never felt, and so we went to dinner, had couple cocktails, and felt like, other than that, a normal day.

Roderick Jefferson 2:28
The problem was, it was anything but normal. So I went to sleep as normal, woke up the next morning. So every morning I meet up with my wife, and we kind of sync on calendars, right? What’s going on with you? What’s happening with me? And that day, she said, wait a minute, something doesn’t sound right. Now, inside of my head, I heard a conversation like we’re having right now. What she heard was gibberish, and so thankfully, friend of hers had a small TIA recently, and so she walked me through the protocol.

Roderick Jefferson 3:01
And she, you know, What’s your middle name? I could remember, count to 10, that’s easy, 1, 2, 12, 27, 58 and then she said, say your ABCs. I was like, You’re kidding, right? She goes, No, say your ABCs, A, B, L, Q, W, X, Y, H, and she said, Go in the bathroom. Look at your face. Is your face drooping? I said, No. She said ‘I need you to call, and I had my team with me, said ‘I need you to call, Tim, you’re having a stroke.

Roderick Jefferson 3:32
They rushed me over to the emergency room, they do the protocol, unfortunately, it was too late for me to give the shot to break up the clot, and it turned out that I had a sleep stroke the night before. Now, bear in mind, there’s a 98% fatality rate when that happens, so I am now part, proudly, part of the 2% club, and I’m still here.

Bill Gasiamis 3:57
That’s.

Roderick Jefferson 3:58
That’s where it got interest.

Bill Gasiamis 4:00
Sensational to here, man.

Roderick Jefferson 4:02
Yeah, that’s where it got really. interesting, because I was flying back home that day from LA back up to San Fran. The problem was, when I got in the plane, the cabin pressure and the altitude I passed out. I got off, my wife and son were waiting for me, they rushed me to the emergency room, and I don’t remember the first three days when I was in the hospital, but I remember my wife saying, there was no reason he should be alive with that altitude and also cabin pressure, I don’t know how he’s still alive.

Bill Gasiamis 4:37
How do you get your head around that? Okay, so, you know, I’ll give you a little bit of a I’ll try and set the scene. Some people, they get into a car, they have a near miss. Do they take it as if they’ve already had the car? Lesion. They lose their marbles against the other person. It can become like a massive thing. Others people have a other people have a near miss, and they go ‘Oh, we missed everything’s all good. How do you go through those motions of trying to wrap your head around this near-miss, and the fact that you and I were talking about this right now?

Roderick Jefferson 4:50
I think if it would have just been that being the near-miss Bill, I would have been okay-okay, things are happening. I’m at a high level of stress, I know what’s going on, but when I got back to actually being clear headed somewhat again. I now stuttered aphasia, really bad, I was having a hard time focusing my eyes, I couldn’t remember what had even happened and that I was even on a business trip, and so then one night, my wife was and it was during covid, so my kids couldn’t see me.

Roderick Jefferson 6:02
All they saw was, you know FaceTime. My wife’s going home, and she’s crying. Like, is, take me, like, two hours to get a sentence out right? Like ‘babe, what’s wrong? And she said ‘I’m going home, and I don’t think I’m ever going to see you alive again. I was bad, really bad, because I was progressively getting worse and worse and worse, they now have me on full blown oxygen, I’m having a difficult time swallowing, and then that night, I hear Code Blue, and machines start going off, and everyone’s running into my room.

The Out-of-Body Experience

Roderick Jefferson 6:38
Now suddenly I go from Beep, beep, beep, beep, really fast, dude, beeeeep, I’m flatlined, I’m dead. Wasn’t near death, I was flatlined. So I float up to the corner of the room, I’m looking down on the doctors and nurses, they’re pulling fluids out of me, they’re doing chest compression, and I look to my left, and it’s my mom. My mom died in 1999 so now I’m not scared. I’m actually oddly at peace like I’d never felt before, I wear these glasses because, you know, getting gray and catching up in years.

Roderick Jefferson 7:17
I can’t see without these things on, I didn’t have them on that day, but I saw the most vibrant blues and greens and oranges and yellows, and I said to my mom ‘Okay, Mama, I guess I’ve done everything that I can, I’m ready to go. And she looks at me, and I remember exactly what she said. She said ‘No, baby, I was sent to tell you that you’re going to be okay and they’re going to figure this out. Now I’m sucked back into my body. I’m lying flat on my back, my chest is killing me because of the chest compressions, and she’s gone.

Roderick Jefferson 7:52
Now I’m still flatlined, but I can hear muddled, you know, kind of whispering and mumbling going on with the doctors, and they’re all trying to and suddenly I hear the one word that no one ever wants to hear Bill ‘Clear. I went ‘Oh no, this is not going to be good. Now bear in mind, I’m still flatlined at this time, but I can hear things, and it was kind of like when you go to the dentist and they give you twilight, where you’re not all the way out, but you’re really not there either.

Roderick Jefferson 8:24
That’s how it felt, and so he yells clear, and I can hear, it sounds like sandpaper, and he’s rubbing the paddles together. Now he’s coming down to shock me, and suddenly I go from beep to beep, beep, beep, beep, beep, I’m back now. I’m literally in the room, I can see everyone, everything goes ‘What’s going on? He’s coming down to me. I grab one of his hands before he gets to me and shocks me, I still can’t talk, but at least I have enough, you know, grip, to grab him, and from there, now that I’m back, they went into a whole different protocol, like I’ve never seen.

Roderick Jefferson 9:02
So I know it’s a long time explaining. Now I’ll answer your question. How’d I get my arms around it? Um, there were a couple things that happened. One was I was still somewhat incapacitated, but when I could finally clear, I remember I prayed the same thing every single night, not may I get better? Can I get to this? Can I do that? I prayed, God just let me wake up tomorrow.

Roderick Jefferson 9:31
And from there, it changed, as I started to come back, speech therapy, physical therapy, occupational therapy, the whole nine. I’ve got 10 different neurologists, and they’re checking on me right? And it turns out that it has changed my entire life, and it’s my four F’s, Faith, Family, Friends and Fun, everything else doesn’t even hit my radar anymore. The way I think, the way I approach things, my level of temper, everything has changed from that day because I was brought back for what reason? I couldn’t figure it out, and I’ve given up on trying to figure out.

Bill Gasiamis 10:09
Let’s take a quick pause here, but we’ll be right back with more of Roderick Jefferson’s powerful story before we continue, I want to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. It’s filled with practical guidance and inspirational stories of stroke survivors who turned their adversity into an opportunity for growth, you can find it on Amazon or at recoveryafterstroke.com/book.

Roderick Jefferson 10:36
All I know is I am here to now share that story and also help others that they may not go through what I went through. And what I mean is having to learn how to use a spoon again, how to tie my shoes, how to button my buttons, all those things that we just take for granted, I don’t take anything for granted, we always say tomorrow’s not promised until you’re in a position where you really don’t have it tomorrow and you realize how amazing it is to walk across the room to the kitchen, to walk to the bathroom on your own, to be able to do what you do.

Roderick Jefferson 11:14
The worst part is by trade. I’m a keynote speaker. Imagine what that did to me, I stuttered so bad that I literally stopped talking, I went snow blind, I lost sight in my eyes, I lost the use of my left arm and my left leg. Had to work through all of that, and I am incredibly blessed to still be here. And like I said, I don’t even try and figure out why anymore, I just appreciate the fact that I’m here.

Bill Gasiamis 11:42
Wow, man, I love it. So you didn’t have the near-miss, you actually had the collision, and then you’re dealing with the aftermath and that whole floating above yourself and looking down and paying attention to what’s happening, and seeing your mom, and all those things we hear about people talking about that regularly, you hear about that you can never. You can never what’s the word? Relate to it, you can never understand it, you have to take those people for their word, and they’ve got no reason to be lying, but then.

Roderick Jefferson 12:23
You can’t make that up, no one’s that creative.

Bill Gasiamis 12:23
And then you experience it, and then it’s back into the world, and now, from that state of euphoria, seeing your mom being guided, now you’re back to Earth, and now you have to get through it well, not on your own, but without the spiritual connection from Mum, the way that she was to bring you back from where you were. So now you’re back, and now it’s still covid, and you’ve come you’ve come around, and they’ve kept you alive. So then what happens? Then, like, how do you navigate the next part of that awake time?

Dealing With The Deficits From Ischemic Stroke Hypertrophic Cardiomyopathy

Roderick Jefferson 13:07
Well, the next part was all about, how do we now start getting the use of my faculties again? So I’m in the hospital for an extended stay now I go home and I’m still stuttering really bad, and still having a difficult time seeing, still not fully using all of my limbs. I remember it was a Saturday, matter of fact, it was November 20, because it was my son’s birthday the next day, and we were watching, listening my case, to an American football game, and I just got the worst sharp pain in my head I’ve ever.

Roderick Jefferson 13:48
Felt like someone was driving nails into my head, and I was screaming and literally on the ground crying that it was in pain so bad. I’m a big guy, 64-65, right? I was in a fetal position, then all of a sudden, it felt like a wave hit me of energy. I look up at my wife and my daughter, and I can see her, first of all, and I said ‘It’s clear as you’re hearing me right now, I’m not sure what happened, but I feel like myself again.

Roderick Jefferson 14:26
Where’d that come from? So they rushed me back to the emergency room, thinking maybe an aneurysm had burst, or something’s going on in my brain, and they took me back to the same hospital that I was just in because we wanted to get film of now post versus what I look like when I was in the hospital, they took them and they superimposed them on top of each other, they were carbon copy. So physically, nothing changed in my brain, but somewhere in the depths of it, my aphasia was gone, there was no stutter, I was able to move around again.

Roderick Jefferson 15:05
So I now am writing a new book called ‘The Miracle Man,and telling the entire piece. But now where it all started was twofold, I was an executive in corporate and traveling a lot, moving around high level of stress, and I became comfortable at that red line level of stress, and then it turns out that I have something called hypertrophic cardiomyopathy, where the normal heart squeezes. Now no blockage bear in mind, but the normal heart squeezes at about 55% to 65% when it gets down to 20% to 20% cardiac arrest, you’re gone.

Roderick Jefferson 15:47
That day when they rushed me into the hospital, I was at 22% of heart function after I got off that plane, I don’t try and figure out why me? Why did it happen to me? Why am I able to bounce back? I just roll with it. And again I have a whole I’ll call it a fixation, an addiction, almost to being able to help others not get to this level, and for those that are there to know that you can get through it. Now, I was in a bunch of support groups online that I had to drop out of because I started getting survivor’s guilt.

Roderick Jefferson 16:25
These are people two years later ‘Hey, I just used a spoon for the first time, I just walked 10 steps. And for me, I was like ‘I’m about to get on a flight and go to Amsterdam and do a keynote speech. Right? Now, on the plane, that’s when the survivor’s guilt kicks in lik ‘Okay, these people are far worse than me, because when you think stroke, you think Stroke-Stroke, they may never bounce back, they may never get back.

Roderick Jefferson 16:51
For me, it was about six months, and I felt like I was probably 90% back. But also bear in mind, I take 14 to 16 pills per day of medication just to stay balanced, I don’t take those, I don’t sound like the guy that you’re talking to right now.

The Survivor’s Guilt

Bill Gasiamis 17:13
Okay, let’s talk about the survivor’s guilt. So I experienced that, and it’s a common thing, you hear a lot of stroke survivors talk about that when you experience survivor’s guilt, like, what are you guilty of? What is the underlying emotion that you’re grappling with? For me, it was, Why am I so special? Why did I survive and they didn’t? Or why did I get away with the way that I did? I’m still living with deficits, but why? Why are mine? We’ll call it on a lower scale of deficit compared to other people.

Bill Gasiamis 17:54
And there was a lot of why questions, like, it was, Why me? But not why me? Why did this happen to me? Poor me. It was the other why me, which seems like it’s a it’s a positive questioning of the experience, so that I can then transform it into something beyond a bad experience, and like you make something out of it, like use it as a as a springboard to something else, something better. What’s your version of the survivor’s guilt-like?

Roderick Jefferson 18:32
Dude you’re spot on, It was never poor me, why did it happen? Why’d I have to go through this? Why’d I have to fight through it? It was, Why was I the chosen one? Why are these people still struggling and realistically? May never get back to quote, unquote, normal, if you will. It was also, how did it happen so fast? Now you would think someone that that has a spiritual background and relationship, that I prayed my prayers were answered.

Roderick Jefferson 19:02
‘Okay, great, now that should have been a phenomenal testimony, if nothing else, to be able to go out and tell the world that I don’t have to, whether it’s God, a higher be, or whatever it is that you believe in, to go out and put that story out, which I was doing, don’t get me wrong, but it was kind of half hearted at first, because it was yes that did happen. Yes, it did validate that there’s a higher being. Yes, I was spared. But then there’s also the rational side of humans, of ‘Why me? Right?

Roderick Jefferson 19:35
And again, I had to drop out of the the support groups, because I was healing at such a rapid pace that I actually was put into a study here at Stanford University with 11 different neurologists that had never seen it move as fast as far as I had done again, something else to your point, you would feel like should be positive, I was finding a hard time finding the positive, I was positive that I’m still alive and happy and thankful, but I could not rationalize ‘What’s so special about why me? and why are those poor people? And I didn’t mean this negatively or talking down.

Roderick Jefferson 20:18
It was, why are these poor people going through such a difficult, extended, elongated, and in some cases, lifelong, these people are never going to get back to what they were before and not I won’t even say normal, just where they were, where in this conversation with you and I, and I’m sure you’ve heard the same thing, people say you had a stroke. I would never know if you didn’t tell me, and then, in the mind, you kind of go ‘Why? Why me? I don’t want to give it back. Don’t get me wrong, I’m not tempting fate, but it’s something where, rationally, there’s really no explanation.

Bill Gasiamis 20:18
Well for me.

Roderick Jefferson 20:20
You feel the same?

Bill Gasiamis 20:21
I did, I had all of that, and this is where it’s evolved for me a little bit, and the guilt was, you’re not doing enough, you’re not doing enough, you’re doing you’re half assing it. You could be doing more and in a constructive way, in that a friend of mine, the podcast exists because a friend of mine put it in my head that planted a seed like because I was doing a lot of research to find out how I’m going to heal quickly, how I’m going to get better I’m going to get back to life.

Bill Gasiamis 21:41
How I’m going to recover my cognitive function and my ability to type and write and participate in life? Right? So I just My life’s completely different, I changed everything about the Bill that existed before, all that stuff, and then he kind of planted that seed is you’ve learnt a lot. He said ‘What do you know about stroke? And I could talk for hours about, what do I know for stroke? About stroke? What do I know about recovery? What do I know about mindset? Emotions?

Roderick Jefferson 22:13
What’s an ischemic? What’s a hemorrhagic? I’m sure maybe you don’t understand exactly what’s going on.

Bill Gasiamis 22:20
You name it, right? And then I said to him ‘Well, I’d like to share that with people and coach people get through it. You know? And it whenever, even when I said that, I said it to the point of, I’m going to do it one on one with people in my local area, and he said to me, like, one on one ‘How many people are you going to reach like that? And I said ‘I don’t know, I don’t know how many people there are in my area that need that kind of support. He said ‘You know, there’s this thing called the internet, you know, you could do it online.

Roderick Jefferson 22:49
Really big, it’s going to catch on one day, Bill, it’s going to take off.

Bill Gasiamis 22:52
Yeah, and I’m thinking ‘I can’t see that, I can’t. I can’t visualize how that could possibly be a thing, but I just accepted what he said and just took it on face value, and we had the conversation, and the conversation ended, but that planting of the seed and then that feeling of you’re not doing enough ‘Why me? Why did I make it? Combined somewhere they kind of merged, and then the result was ‘Okay, you need to do this online, you need to create a podcast, you need to work out what the name of that podcast is.

Bill Gasiamis 23:26
You need to work out who your audience is, and you need to do that every single week. And that’s kind of now ‘The Why-me kind of now makes sense. It’s like ‘Ah, that’s why me, because I was supposed to do this, get through it, learn from it, share the learning, and then put it out there on a global scale, so people can download it on the internet, audio, video, transcribe it, so that everyone can get their hands on it. And then, when you when that idea of stroke becoming the best thing that happened to me enters your head.

Bill Gasiamis 24:10
What the next thing is that you have to do is you have to actually write the book about it. And when I reflect back on those 12 years that I’ve been through this journey so far, all that seemed to come very quickly on reflection. It’s like going going through childbirth for a woman, you know, my wife, would say, at the beginning, she said, I’m never going through that again.

Bill Gasiamis 24:31
Quickly, she forgets about how hard it was. All of a sudden, three and a half years later, we’re pregnant again, and then you go through it again. It’s painful again, and it’s like ‘Oh, this is how hard it was, Oh, that’s why we didn’t want to do it again, but we did it anyway, and now that’s what the book was. The book was a very difficult thing to do, now that I reflect on it, man, that was such a great experience. The podcast was seriously hard to start, and now the I’ve got momentum and a system in place, it’s really easy to do record an episode and get it up and running.

Bill Gasiamis 25:05
So it’s like, that’s why me, that’s why, because I had to find a way to reach these people that was beyond, beyond my capabilities and my skills in the past, and as a result of that, the guilt the survivors part, the guilt of that has dissipated, and it’s now I’m on purpose. I found the the meaning in my life, and I and I’ve transformed this whole experience from being something that happened to me to something that I all I do is I reflect on it as a something that I’ve experienced, but it’s not traumatizing me on a daily basis.

Bill Gasiamis 25:48
I see it in the past, and now, the stuff that I’m doing is kind of guiding people at the next level so that they can move beyond where they are, and I don’t know how long it’ll take for them. So what I’m doing is going, you know, just go on the ride, and as hard as it is, reflect back every once in a while to see how far you’ve come, so that you can get a little bit of it, so that, so that you can feel empowered to take the next hard journey, because there’s more hard journeys to come.

Roderick Jefferson 26:27
First of all, thank you for your ‘Why, and thank you for keeping this alive and sharing it with the world and starting the podcast and writing the book. Because to your point, there are a lot of people that you’re you’re going to touch, that you’ll never meet, but you may be the motivating thing that pushes them over the top. Maybe that’s your why is you’re supposed to be that conduit to show others what success looks like, and I don’t mean professionally or monetarily, like we always look at success.

Roderick Jefferson 26:59
But literally, the fact that you were back as close to quote, unquote normal Bill as you were before stroke, that’s tough though, because again, if you are the anomaly, are we giving people hope that they may never get to? Or is it really the folks like you and I that do get back and we show them, and we show them a level of determination and grit and persistency and drive that they may never had, and either way, I think it’s a huge upside, I really do. I have a question for you after your stroke?

Dealing With Emotions After The Ischemic Stroke Hypertrophic Cardiomyopathy

Roderick Jefferson 27:41
First of all, where was your stroke located? And secondly, after it was over, did you have any difference in emotions afterwards? Because I know for me, every time I said I had a stroke, I broke into tears. I’m not a big I have no problem with crying, but it took me over and consumed me, because mine was in my speech center, which is right next to the emotion center. So your story I’d love to hear.

Bill Gasiamis 28:11
So, I had a hemorrhagic stroke a faulty blood vessel. It was four centimeters, about one and a half, two inches from the from the ear into the middle of the brain, near the cerebellum. So it kind of affects your balance area. And in order for them to get to it, when they operated, they had to kind of move out, out of the way all the other parts of the brain, so they’ve interfered with a fair amount of it to get into there. When I woke up, I had numbness on my left side after surgery, and that has never gone away.

Bill Gasiamis 28:44
That was that’s been there since 2014 and that was the main symptom when I realized that I needed to be in hospital, that was the main symptom that I was experiencing in total left side numbness. So the initial experience with the numbness came because I had a blood vessel burst and the and the clot in my head was initially small, probably about the size of a dime, so they’re able to settle it down, but then, as it bled a second time.

Bill Gasiamis 29:15
The amount of blood was about the size of a golf ball and sitting there in impacting all of those areas that you can imagine a blood clot that big would impact. So, that made me emotional, it made me angry ,it made me all over the place, and it impacted my cognition, my ability to remember things, to write, to focus, to begin and start a sentence, a whole bunch of stuff kind of went really really wrong. And then as other things sort of started to come back online, when the clock, because the clock was in there for about two and a half years, but forever decreasing in size.

Bill Gasiamis 30:00
Because it’s being absorbed and broken up by the body, and as it’s decreasing in size, more and more of my functions are coming back on, but the emotional part was still a little bit off, and I would find myself in a situation where I would be on stage for the Stroke Foundation, having to talk about my condition, so that I can set the scene, so that I can talk to the to the audience about how to prevent stroke. And then as soon as I mentioned, you know, there was a keyword that might come up out of nowhere that I mentioned, I would burst into tears.

Bill Gasiamis 30:34
And there was no controlling it like previously, where you could, you know, you could, you know, change your face, and you could breathe differently or whatever, and you could stop it from happening, and then it continued happening, and to this day, it still continues to happen. So now we’re talking about 12 years later. I did the book launch a few, a few months ago, and I had a presentation in front of about 35 people where I was going to talk about my journey, how the book came to be, etc, around about a 20 minute speech, I cried four times.

Roderick Jefferson 31:12
Wow!

Intro 31:12
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 31:42
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Bill Gasiamis 32:12
And it was so difficult to not cry, but I’ve accepted the fact that it happens, and when I do cry in that context, like it sucks the audience in even further.

Roderick Jefferson 32:27
Yeah, it’s crazy how that works, is it?

Bill Gasiamis 32:29
I have them in the palm of my hands.

Roderick Jefferson 32:30
Everybody’s on your journey, and they’re on the edge of their seats, and they’re they’re feeling sympathy and empathetic for you, and you’re like ‘If only I was good enough that I could have been here crying on demand, but that’s not what happened.

Bill Gasiamis 32:44
Not at all, right? And then, and then what happens is you get the message across. It’s more powerful, you know, really makes people sort of sit up and pay attention to the the the impactful nature of that, and part of the reason why I cried was because I can’t contain my excitement for being there, my excitement for people being in the room, my joy for being alive, I can’t contain my emotions because the journey that got me to a book launch has been so hard, arduous, difficult obstacles to overcome, and I’ve overcome them all, and still, there’s more to overcome.

Bill Gasiamis 33:27
And it’s like, I don’t know how to deal with all of that stuff, and I don’t know how Bill, the guy that I know before stroke, how that guy has found that within himself to get through all of that and be in that place, in that room, on that day after everything that he’s been through, I do not know those two people. They are two different people, and it’s overwhelming, overwhelming in a good way. So does that make you feel a little more?

Roderick Jefferson 34:06
Thank you for not feeling like I’m the only one going through this, right? And I’m sure there are a ton of us, but the similarities especially because we had two different types of strokes. Mine was ischemic, where the night, while I was asleep, as I said, a clot created in my heart floated up to my brain, lodged in the center of my speech center, and it just kind of went haywire and shut things down.

Roderick Jefferson 34:33
But the fact that we have a similar path, thank you for sharing that, because it definitely does give me an opportunity to see it through your lenses, and we’re seeing the same things, just from different angles. And so I was always wondering, Am I the only one going through this? Right there is and then I go to the stroke I go to Stroke Association to go and try and help, to speak for free, go and give back, I got nothing back from them, it was almost like we don’t want you to come help ‘We just want you to donate. And that infuriated me.

The Pseudobulbar Affect

Bill Gasiamis 35:16
Okay, cool, right? So I get that a little bit too, right? And I’ll tell you my version of that. So firstly, you need to know there is a term for what we the emotional outbursts that we experience. It’s Psuedobulbar affect. It is very well documented, and people with neurological injuries experience it a lot. So Psuedobulbar affect, some people will have the crying version of it.

Bill Gasiamis 35:42
Some people will have the laughing version of that, where they laugh at in at times where it’s not appropriate. And it might be.

Roderick Jefferson 35:51
Yes, I didn’t get that.

Bill Gasiamis 35:52
Yeah, and it might be, even I’ve met people who have will cry at a funeral and sorry, will laugh at a funeral when they’re not meant to be laughing, but it’s that crazy outburst that they can’t control, so they have to make themselves scarce, they’ve gotta get out of there.

Roderick Jefferson 36:12
I think I’ll take the the crying type, I’m okay with that now.

Bill Gasiamis 36:17
It’s more endearing. So, there’s that now, with regards to the Stroke Foundation here in Australia, again, I’ve donated my likeness, I’ve been in TV ads, posters on the back of busses, they still have a online campaign where they use me as the face of the fast campaign, I presented for them, volunteered my time to present for them in the space of raising awareness about how to prevent stroke and how to recognize a stroke. Really cool things, right? All those things, but the challenge is that they are funded partly by the government.

Bill Gasiamis 37:06
And on the other side, they are funded by private donors, and their mandate is to run a scientific approach to preventing stroke, and that’s their biggest mandate. The other parts of stroke they’re not interested in, because they’re not funded to do that kind of work. So if I turned up and presented myself as somebody who would like to speak on their behalf, about my story that benefits them and me, and I requested payment or money for that, they wouldn’t be up for it.

Bill Gasiamis 37:50
I started my journey there, and then kind of found myself going, well, I could do all this on my own, I could, instead of run, put my time and effort into their organization who doesn’t have a mandate to support somebody like me, I could do this for myself in that and then not have to work within a mandate that doesn’t suit my desire and how I would go about presenting this now I’ve done 300 and nearly 10 episodes, something like that of a podcast.

Bill Gasiamis 38:31
If I was doing that for the Stroke Foundation, could you imagine what an amazing resource that would create for the Stroke Foundation, and they kind of have these little peripheral programs that they get a small amount of funding to create, but then the funding ends, and then they can’t continue it, so they’re very restricted with how they go about that. The next part for me is I wrote the book, and then I applied in a scientific way, I applied to present on my thesis. We’ll call the book a ‘Thesis’ for this particular scenario.

Bill Gasiamis 39:09
Which was the study that I did that found the 10 steps that people took that made them arrive to the point of saying stroke was the best thing that happened to them and that application that I put in was for the smart strokes conference, which is coming up in about two and a half weeks, and I was accepted to speak at the conference, It’s in Australia, it’s the smart strokes conference. A whole bunch of clinicians get together and they talk shop, and I’ll be there presenting my thesis for 12 minutes.

Bill Gasiamis 39:46
The idea, what I thought of how I developed the story, where I found my participants, what the outcomes were, the methodology I used, the conclusion, how they might be able to apply it in their clinics from now on, and then I’ll invite people to collaborate if they need to or want to see that is what I wanted to do for the Stroke Foundation, but they don’t have the mandate to do that. So here I am now in 12 minutes, I’m going to get to speak to, hopefully, hundreds of people who are specifically my audience.

Bill Gasiamis 40:23
I’m going to be able to potentially create a new conversation about how we can take this further. So from your perspective, because you’re already an accomplished speaker, you have a platform that you could use at some in some way in the future that you can add to your your toolkit this particular presentation that you feel is important for people to become aware of, with regards to stroke specifically, or the ideas around recovery From a stroke, like resilience, leadership.

Roderick Jefferson 41:02
That’s how I’m messaging and positioning it now, the resiliency and the determination and grit, those kind of things. But I love the fact that you figured out a way to message and position this to the medical community that mattered enough to them to give you a platform that you can now leverage outside of their world and inside of their world. I mean, you’ve got, what, 12 minutes you said. You’ve essentially got the equivalent of a TED talk with a live audience and Q&A That’s amazing. That’s ultimate goal, to do what you’re doing right now.

Bill Gasiamis 41:44
Yes, so I’m still fulfilling my desire to want to help. This will still, perhaps there’ll be Stroke Foundation people in that room, so they may not be the specific organization I’m representing, and that’s okay, but I’m still representing the stroke community, and that’s really what it was about. It was about, how do I do it? Still, even though these guys can’t, because of their mandate and the way they’re funded, can’t support somebody like me who has these types of desires.

Bill Gasiamis 42:18
So it’s great if they contact me and say ‘Can we use your likeness again? Or can we? Yep, I’m up for that, no problem, we can do that, I’m happy to be that guy. It’s not like they don’t remunerate you, they do, but on a very small scale, right? So it’s just to say thank you, and I appreciate that and that’s great, right? So from here on what I don’t know. And this is the beautiful part Roderick, is I don’t know what’s going to happen when I get to that end of that presentation, and that’s the part that really excites me, right?

Roderick Jefferson 42:54
That’s amazing, because you’re getting to fulfill your need of giving back right, to that guilt survivor, you get a chance to help kind of squelch and put that one to bed. And at the same time, you get a chance to help the medical community, really at a deeper level, personally, to understand what we are.

Roderick Jefferson 43:16
Now, here’s the piece that you really hit on, that struck with me, and that is, then what you never know who’s going to be in that room or that’s going to see that recording that propels you, your messaging and our entire stroke community to a whole other level. That has to be incredibly exciting.

Bill Gasiamis 43:39
It is the most energized I’ve ever felt. You know, it’s if I’m not working on it, it’s working on me. Why aren’t you working on me? Why aren’t you present? What aren’t you doing? You know? And it’s like, it’s always in my mind, I cannot escape, escape it. And in in a really good way, it’s like, oh, here’s a new idea for you that you didn’t think of five minutes ago. Write that down, act on that later. So it’s very it’s a very beautiful kind of, like organic.

Roderick Jefferson 44:15
It has to be somewhat cathartic and rejuvenating, but at the same time therapeutic and healing for you too. No?

Bill Gasiamis 44:25
It’s so much, it was a selfish pursuit, all of this stuff was selfish because I did it for me at the beginning, and then it was cathartic and therapeutic. And then I realized ‘Oh, this is way better than helping just me, because it’s also helping them. and that made the that just me thing much, much better. Because if I’m being selfish and doing it for me, and the result is somebody else gets something positive out of it, then it’s not really that bad-selfish, it’s not really that self centered, ridiculous, crazy one that you feel bad about.

Bill Gasiamis 45:04
It’s the one that you think I’m going to keep doing this because other people send me emails, they comment on my YouTube videos, they send me Instagram notifications. Everyone is reaching out and going, thank you for that episode. I love that chat. I really relate to that, and it’s like ‘Oh, I never knew that, that’s a bonus. Thank you.

Changing Lives After Ischemic Stroke Hypertrophic Cardiomyopathy

Roderick Jefferson 45:24
Well, it part of it has to be self care now, right? It’s no longer selfish. It’s now self care, but at the same time it is you’ve learned to ‘Give, to give, as I put it, right. It’s not about you at all, you’re just a conduit to be able to help others that you may never, ever know, ever see, even exist, but it’s the impact of all of that struggle that we both had to go through that now could change someone else’s a number of people’s lives, especially with, you know, that thing called the internet that’s going to be big one day, right? You never know who globally you’re touching.

Roderick Jefferson 46:10
This isn’t just a regional thing, you’re not just doing this in a room in Australia with, you know, a finite number of people in the room. No, when you get that footage and it goes out on your YouTube and IG and all your social media there.,I firmly believe, and I do the same thing with my YouTube and IG pieces, I’m starting to put more and more of it out, and I firmly believe that somebody is watching those and being inspired to get better, I don’t know if they’re going to get well, at least, to get better.

Bill Gasiamis 46:46
Just aim for better and then see what happens. Now I’m going to go back and I’m going to comment on something that you said a bit earlier. You know, the whole issue of you and I, quote, unquote, appearing normal like it never happened, people seeing the recovery and thinking that’s what stroke looks like. I know people have had a stroke. They look fantastic, they they back to work, they do all this stuff, right? So I struggled with the title of my book ‘The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 47:17
The first comment I made on YouTube about it, where I was promoting the book, holding it up and promoting it, somebody had a negative response, and the response was, how could you be promoting stroke as something worth experiencing and how amazing it was? And it’s like.

Roderick Jefferson 47:34
It’s amazing now.

Bill Gasiamis 47:36
Clearly I’m not promoting stroke. What I’m saying is that the post-traumatic growth is the part of the journey that you are going to be grateful for experiencing. It’s going to be hard, it’s going to be challenging, it’s going to make you cry, want to curl up, it’s going to be something you want to walk away from, you’re going to have to it’s going to be emotional, it’s going to be mentally difficult, physically difficult, but if you face those challenges, you will succeed in having post traumatic growth, some kind of positive outcome from facing those challenges.

Bill Gasiamis 48:20
And that is what your story and my story is about. It’s not about having people compare themselves to us and say ‘Well, it’s easy for you to say, Roderick, because look at you. It’s about saying that as bad as your situation is, everything can be improved, and if your mindset is that it can’t that’s the outcome that you’re going to get. But if you believe that you can improve something, and your mindset is one of a growth mindset, rather than a stuck mindset or a fixed mindset.

Bill Gasiamis 48:54
Then you’re going to experience a positive outcome, and if you don’t know, if you haven’t got the skill to focus on what’s good about this, then you’re going to be forever stuck in what’s shit about this, and that’s not a place you want to be.

Roderick Jefferson 49:09
Yeah, and we can only lead them to water. We can’t make them drink, right? And they’re never going to understand how we feel. And regardless of what is, I always say things to people, whether it’s death, whether it’s, you know, strokes, whatever it may be, I don’t know how you feel Bill, but I damn sure know how it feels. And so if I can turn that into again, someone that knows that or believes and starts to execute move forward on better, not well, but better. And you know what? I now understand my purpose for still being here, and I truly believe that is my ‘Why me.

Roderick Jefferson 49:59
We’re talking about with the survivor’s guilt of, why am I still here? I think it’s literally not to motivate but to really show others that it’s not just possible, it’s probable, it may not get back to the level where I am. To your point, don’t compare, right? My chapter 20 may be your chapter two, you never know, or you may be at chapter 20, and it’s just where you’re going to be. But incrementally, if you can see even the smallest of forward movement, to me that’s still progress.

Roderick Jefferson 50:41
And progress means a whole lot of different things, because every stroke is different to your to your point. People see us and we go, I’d never know, yeah, I always say, because I had a stroke, the people that never get back, they had a stroke, stroke, and that’s not to minimize what has happened to you and I, just the fact that there are tears and levels of strokes.

Bill Gasiamis 51:05
Yeah, I feel like part of my journey, also Rodrick is to just tell people about concepts that they may never, have never heard of before, like.

Roderick Jefferson 51:16
You’re a different phase of stroke now.

Bill Gasiamis 51:18
Yeah, like, if I just say, like, the post traumatic growth as a concept. Anyone heard of that before? Well, if you haven’t, you better start looking into that, because you need to know about it, right? So you can recognize it when it’s happening to you. What about Psuedobulbar affect? Well, you’ve never heard about that, well now you’ve heard about it.

Bill Gasiamis 51:39
That might make you feel a little better, and you can explain it to your family, who feel uncomfortable when they say a six foot four Man Mountain start crying in front of them and, you know, curling up in a ball. You can explain it, and that’s the reason that could be part of our journey is just to tell you about concepts you never knew about before, so that you can be more informed.

Roderick Jefferson 52:02
Think you’re under something, I think there may be another piece that just hit me while we were talking. We may be a new look and a new face of stroke, where you don’t think just stroke, stroke, right? It’s kind of like heart attacks. At one point, heart attack, you’re gone. Now, people have had heart attacks and gone back to semi normal lives. I think we’re able to show that as well and change the mindset of what stroke looks like and what stroke can look like, it’s not just full debilitation or you’re in a bed or you’re in a wheelchair, it’s also no back to semi normally function.

Roderick Jefferson 52:47
Like I said, I need those 16 pills to keep me, quote, unquote normal. But thankfully, it’s there, and it keeps me, and I don’t even say forward, keeps me balanced, because there’s been times where you know you’re busy, you miss your round of meds, I now know what that guy looks like, and then, by the way, it’s right below the surface, it’s not like he’s gone completely. He’s right below the surface, and without that balance, kind of like any other med, right, whether it be diabetes or by or bipolar or whatever, what the med does is it doesn’t take it away, it just gives you balance.

Roderick Jefferson 53:30
You take that away and that same blubbering, crying, stuttering, deep and aphasia guy comes back. I don’t want to see that guy if I don’t have to, it was the most difficult and the best thing that ever happened to me, because mine. Now, let’s go away from the neurologist. Now, this is my second stroke, I had a stroke five years prior, small on the other side, so I’ve had one on both sides now, my neurologist was talking to my cardiologist.

Roderick Jefferson 54:06
As we were doing a consult, my cardiologist said, then I remember it was over, he said ‘Thank God you had that stroke, or you would have been. And I had it october 28 ‘You would have been dead before Thanksgiving in September. Because it now brought up the heart issue because of the stroke, because that’s what caused it. Now, it shifted the focus. I was a healthy guy, I thought, I have a whole different definition and perspective of healthy these days, right? And I realized everybody’s going through something. My daughter has an autoimmune deficiency.

Roderick Jefferson 54:52
You look at her, you’d never see it like with us, we don’t walk around with a snap on our forehead that said, I have a I had a stroke that’s flashing you. But I guarantee you, if either of us parked in a handy spot and we got out of that car, people are looking at us like, seriously, guy, that’s the only place you could apply. Wait, where’d you get the placard from? How much did it cost you? And I’m looking at you going, you understand what’s bubbling underneath the surface. So what it did for me was gave me a whole different level of empathy for people.

Bill Gasiamis 55:25
Yes, yes.

Roderick Jefferson 55:26
I don’t assume anything, because you don’t know what they’re dealing, what they’re going through, or what it took to look like the person in front of you, maybe they’re taking 16 pills. Who knows?

Developing Empathy After The Ischemic Stroke Hypertrophic Cardiomyopathy

Bill Gasiamis 55:41
Yeah, and then and then some maybe, you know, it’s empathy is a really cool thing to come from this as well. I’ve said it before on this podcast, I used to see people in wheelchairs and think they were just sitting down. I mean, what an idiot.

Roderick Jefferson 55:58
Never thought that one. No, clearly pre-stroke Bill was a different guy.

Bill Gasiamis 56:05
The guy was an idiot. He was so unaware of things, you know, you never once considered the emotional struggle that that person went through, why they were in a wheelchair, what happened to them, the trauma of say, the injury or like, there was just zero concept. And partly it wasn’t my fault, because I never experienced the life of somebody like that, but also I never knew anyone like that, so it was impossible for me to gain an understanding in an area that I had no connection with, right?

Bill Gasiamis 56:40
And the first time I realized what that was like was when I ended up in a wheelchair and I couldn’t use my legs for a month, like I know now what that means, and how difficult it was to wake up from brain surgery and try to get out of bed to go to the toilet, the nurse thinking that she was going to help me, and me collapsing with a fresh patch on my head after brain surgery, literally on the on the tile floor of the ward, and I know, and I know now what that’s like for the people who are in a wheelchair in a different situation.

Bill Gasiamis 57:19
So it’s like, I can’t believe you were that naive, but I was, and that’s not and I’m not now, and that wasn’t my fault, but I was, I was thick, and I’m glad I’m not, and and now I know people, I know More people who are impacted neurologically by stroke, and physically by stroke, and emotionally by stroke. I know more people than anyone, because I’ve interviewed 300 people that are all impacted by stroke. So it’s like, I am not. I’ve stepped up so I’m not that guy anymore, because he was a good guy, but he was just in la la land.

Roderick Jefferson 58:04
Yeah, yeah, and to your point, you never know what someone next to you is going through or has been through, or how much they had to fight just to be wherever you may be and see them that day, and so it makes you go. Life is a lot different now, and it will forever be changed. And I’m certainly on my side, glad that it has been changed, because I thought I was a good guy, but to your point, I didn’t.

Roderick Jefferson 58:39
You know, you don’t know until you know, what sort of the hours were you thinking I had control of my body and I can do whatever I want, and I’m Superman. No, you’re not, you’re just Clark Kent. That’s what you really are, and there’s no phone booth to go change anything. That’s all you are.

Bill Gasiamis 59:01
Wow. And there’s no phone booths at all anymore. They’ve taken them away.

Roderick Jefferson 59:05
Exactly so there are, there is nowhere to go change into Superman. So guess what? You better figure out who Clark Kent is, and start liking and loving that guy and doing something to give back, not just for yourself.

Bill Gasiamis 59:21
What sort of hours were you keeping, and what is the life of a speaker at your level kind of look like? And how does that juggling a young family and a marriage and all that stuff? How was life? What was it like?

Roderick Jefferson 59:40
At that time, I was back in corporate, so I was senior vice president. I was flying all over the world. I’ve got team in different geographies, different time zones. I’m eating badly. I’m constantly stressed. But again, I got to the point to where that red. Line of stress became the norm, and I realized that if you don’t slow down and and people say, were were there warning signs? Yeah, the first mini stroke was a warning, but it wasn’t bad enough to make me slow down.

Roderick Jefferson 1:00:15
So I went ‘Eh, okay, I felt kind of bad. Now I can move forward, but the second time it said ‘Hello, do I have your attention now? And when you’re laying there and you can’t move, you have a whole lot of time to listen now. Bear in mind, as keynote speakers, we’re talking all the time during that first I’ll say back to your analogy of baby, that first trimester of stroke, all I could do was listen, because I couldn’t move, and I had those conversations every day with God, and I’m like ‘Okay, you got my attention. I’m here now. But let’s I’m here to listen now.

Roderick Jefferson 1:01:01
At first I would say, let’s talk, and then something say ‘You’re not here to talk, you talked enough, you’re going to listen now, and you didn’t want to slow down. So now you’ve given me no choice, and you learn a lot about yourself introspectively, and it makes you reevaluate every part of your personality, of your whys, of your morals, of your scruples, of everything, because if you got nothing but time to think you’re like man, why was I like this? Why did I do this? Why was that important to me? Why was this not? What impact was I having negatively on other people?

Roderick Jefferson 1:01:44
Because I was either constantly frustrated, stressed or angry. And if I get out of this now, this distilling the if phase, if I get out of this, what do I promise to both God into myself that I’m going to do differently. So not just for the point of getting not getting back to that point, but because I found some really dark spots about myself that I really strongly know I hated, and I said, I’ve gotta clean out the closet that part of me has to die forever. I gotta take that corporate mask off. I’ve gotta be more authentic.

Roderick Jefferson 1:02:31
I’ve gotta allow people to touch you proverbially, right? We don’t want the HR issues, but people to really be close, and you know, as well as I do when we’re on the stage, we’re literally untouchable, because they came to listen, you’re supposed to be the subject matter expert, they’re here to hear what you gotta say. They’re looking to be enlightened, I used to do my keynotes, I’d get off the stage, I would go and sign books and go hide out in my room, because I’d be over stimulated by people.

Roderick Jefferson 1:03:08
Now I make sure that I’m touchable. I come off the stage and I let them know I’m the same guy that was up there that you see in front of you ‘What do you want to talk about? Do you want to go sit down. I used to say, grab a cocktail. Can’t do that anymore, right? And don’t miss it, frankly, but I think what I’ve done now is I’ve learned how to listen better.

Having The Time For Reflection

Bill Gasiamis 1:03:33
Sounds like you didn’t have time for reflection, and therefore, you weren’t able to see what you needed to see to stop doing the things that were impacting you negatively. So then you had this moment where everything stops. You have nothing but time. And now, for the first time in years, you can reflect on what has come before the moment that you’re currently in, and you can critically analyze that and go, Oh man, it makes sense why I’m here ‘Ah, okay, all right, so how do I want to avoid being here again?

Bill Gasiamis 1:04:18
Well, I need to implement some changes. I need to look at the whole experience that I’ve had so far up until the day that I was unwell, and I need to make some changes. That is what I did. It’s exactly what I did, to the extent that what happened to me, Roderick is my brain. I describe it as having completely switched off, and then that enabled my heart to come alive. And I had a moment where I physically noticed something weird happening in my chest, really. And it was just that I became aware that my heart was there, not that I didn’t know that before.

Bill Gasiamis 1:04:58
Not that I didn’t feel it beating or whatever, but it actually came into my awareness in a different way, that it’s like you haven’t been paying attention to me for a long, long time. Your desires have been put on hold, and your your head has been running the show and telling you what the right thing to do is, and it’s not the right thing because you haven’t been happy for ages.

Bill Gasiamis 1:05:28
It’s all about chasing the dollar, and it’s all about working hard as possible and as many hours as possible, and being away from home as long as possible, and you haven’t done the things that I’ve requested of you, and that’s why you’re miserable, and that is not something that we can continue down the road in the future. And that was my second stroke. Was the are you paying attention yet? That was the second incident was, Are you paying attention yet? And since you’re thick and you’re not, or I’m going to make you see.

Bill Gasiamis 1:06:07
And boy, did that make me see. So the third incident, when I had the third bleed about a year and a half later, after the first one, no two or almost two and a half years later, something like that, about two and a half years later, after the first one, the third one was more clinical. It was more like, ah, by the way, I’m still here. I’m still bleeding. You just need to do something about this. Now. There’s business and then when my surgeon came and saw me after after knowing me for two years, she said to me, Well, we’ve been through this two times already.

Bill Gasiamis 1:06:50
This is the third time. It’s unlikely that it’s going to stop bleeding and the risk of you having a catastrophic stroke with this thing not being dealt with has just risen to the point where it’s more dangerous than brain surgery. Do you want to take it out? I was like, Yep, no problem, Yeah, I’m ready to do it. It was a very different experience. The first one was, hey, hey, hey. What about me? Look at me. Look at me. What’s happening? The second one was, you’re not paying attention. And the third one was all about business. Let’s just get this done.

Roderick Jefferson 1:07:29
Yeah, I pray that there’s not a third on this side. And then I sorry to hear you had to go that far, but I think you just really touched something inside of me, and that is, I think, what’s happened now is before that, I would see the world through my ego, and since then, I’m seeing the world through my heart. And that ego has taken a long step back, and now it’s how is this going to hit impact someone else? How can I possibly and and positively help someone else? It’s not a Me-me-me kind of thing.

Roderick Jefferson 1:08:11
And then even someone said to me, and a number of people said we noticed a difference in what you’re posting, even on social media and how you’re positioning these things before. It’s not about you in the book, it’s not about you, and the speaking, it’s everything I put up now is about, how can I help someone else, whether it be about the stroke, or about business or even like and I share a lot more personal stories and anecdotes in just in conversation, than I ever did before, because you have to, if people can’t touch you, you’re not, especially in the world of AI, you’re not real at all.

Roderick Jefferson 1:08:53
And first of all, you’re not being real with yourself. So you could never be completely open to everyone else. I believe that I’ve got a lot more sunsets behind me than sunrises in front of me. I want to maximize every one of them that I have, and I want to know that every day I did something to help somebody else. I may not be able to make your life better, but maybe just a little easier.

Bill Gasiamis 1:09:26
See, and you had that in you because your career, and I’ll speak about your book right now. So Sales Enablement 3.0 the blueprint to sales enablement excellence, right? So your career was deep down, really still always about making other people successful. It was still all about enabling people and organizations to Excel. As selling, so that the company could benefit, so that they could benefit, so that the person buying the product would benefit from the product that they purchased.

Bill Gasiamis 1:10:10
However, seeing, having a career in that space through only the ego is kind of like one, it’s only 1/3 of the actual pie as to how to make a successful interaction when you’re selling something, for example, if you’re just connecting to people via their head, and all the numbers are great, you might be missing the opportunity to connect to somebody via through the heart.

Bill Gasiamis 1:10:39
Which who is more touchy feely, not in the actual physical version of it, but in the way that you know they want to be spoken to or looked at or or encouraged, or you might miss the opportunity to understand what their values are, and that makes a sale not land correctly, and therefore they don’t buy. Like there’s so many different things that you can enhance by going through the heart and adding this additional layer to your bow of the head.

Bill Gasiamis 1:11:12
Version of selling, because that’s a that’s that’s got it worked out, right? But then it’s this, this other part of connecting with people you can’t do it with the head, you can only do it with the heart.

Roderick Jefferson 1:11:23
I describe it as pre-stroke, I was teaching people how to sell post sell. Post-stroke, I’m teaching people how to help.

Bill Gasiamis 1:11:32
Yes.

Roderick Jefferson 1:11:36
Now it doesn’t change the mechanisms, it changes the approach, and it literally took the spotlight off of me. Turn it around, and I now put it on the the sellers and or the prospects or the clients. It’s no more, how do you sell? It’s all about how can I help? And it is so much more fulfilling now than when I was making way more money before, but now I can look in the mirror and say, I don’t just like I love the guy that I see, and not an egotistical way. I love him for what he’s doing for others now.

All Because Of The Ischemic Stroke Hypertrophic Cardiomyopathy

Bill Gasiamis 1:12:26
Yeah, it’s a good place to be, man, it’s a completely different way to completely different way to turn up in the world and to participate in the world and to engage with people. It’s just look and it’s all that’s what I keep coming back to. It’s all possible because of stroke. I mean, it’s just in crazy that it’s all possible because we are able to reflect on things that we wouldn’t have been able to if we didn’t have this thing happen to us. That’s I’m going to be on stage speaking to clinicians for 12 minutes, and then I’m going to have three minutes of Q&A because of the stroke, it just.

Roderick Jefferson 1:13:16
Actually, I think I looked it in a different set of lenses, you’re on stage for 15 minutes because of who the stroke. The stroke has helped you become.

Bill Gasiamis 1:13:29
Yes indeed.

Roderick Jefferson 1:13:31
And it’s not to negate what you’re saying. I think it’s more about the guy today, Bill versus pre-stroke. Bill, and they’re going to want to know the why and what changed you, and how do you go through life differently now, where you’re looking at going, it’s just who I am now, yeah, and it’ll be far more authentic that way.

Bill Gasiamis 1:13:55
Yeah. So that’s why the book title, you know that’s why, not for any other reason. That’s the only reason why the book title is the book title ‘The unexpected way the stroke became the best thing that happened. I would have rather learnt the lessons in a more different way, but I apparently I couldn’t. So here we are, I’ll take the lessons whichever way they want to come, and that’s I’m okay with that.

Roderick Jefferson 1:14:26
Thankfully you’re still here, yeah.

Bill Gasiamis 1:14:29
So tell me about your what the future has in store for you. Like, where are you at with that? How are you seeing yourself participating now, in in your work life, in your home life, and in all the other parts of your life.

Roderick Jefferson 1:14:49
I go back to that word balance, right? I just was blessed with my first grandchild six months ago, little girl and I am enjoying this so much now, one, I’m still here, but I now get a chance to see her mom in her at that age, all over again, but at her mom’s age, I was ladder climbing. I was trying to get to that next level. I was moving to try and get promoted.

Roderick Jefferson 1:15:18
I was trying to get, oh, I have a chance to and and it’s the two words that that I hear all the time in my home, and that is, be present, I have a chance to be present. When I’m talking to people, I try to be more present. Used to be I’d be talking to you and I’m checking my phone, or nah, you have my attention. I have yours. I think I’ve gone from a life of presentations to a life of conversations, and I’m loving it right now.

Bill Gasiamis 1:15:59
That’s a pretty profound switch.

Roderick Jefferson 1:16:03
Just feels right.

Bill Gasiamis 1:16:06
Yeah, it’s a two way conversation, whereas before it was one way.

Roderick Jefferson 1:16:14
Yeah, I leave the keynote guy up on the stage, even on the stage now I’m up there having conversations. I’m not giving presentations anymore. I’m talking a lot more about this subject than just the the productivity and the revenue piece, and I’m still doing that, don’t get me wrong, and there’s a place for that, but I think because of this, it’s given me a different platform now, and also different to your point of going and doing your 15 minute coming up, it gives us different stages, which now gives us an opportunity to impact different people differently.

Roderick Jefferson 1:16:55
It’s not just about the money. Money doesn’t hurt, but it’s not that’s not the primary driver, it’s How can I go and help somebody and and my wife says the same thing every time I leave, or when I’m jumping on something like this, she’ll pop her head in, she’ll look at me, and she says the same thing every time go make a new friend, and it just puts me into a whole different mindset and a different phase of life. Go make a new friend.

Roderick Jefferson 1:17:31
If we can do that every day, imagine how much sweeter life is because there’s enough garbage going on out there in the world, but at the same time, there are still some wonderful folks. And I saw something on social media the other day. There are a lot of really good people in the world. If you can’t find one today, be one.

Bill Gasiamis 1:17:58
Yes, that is awesome. I want to, I’m aware of your time, and I want to get us to the end, because I this could be a very long.

Roderick Jefferson 1:18:11
We could talk all night about this conversation.

The Hardest Thing About The Stroke

Bill Gasiamis 1:18:14
So, with that in mind, what was the hardest thing about stroke for you?

Roderick Jefferson 1:18:22
The hardest thing was, as an athlete, not having any control of my faculties, as a speaker, not being able to articulate what I was feeling and going through, that was the hardest part. Well, that was second hardest, the hardest was seeing the pain in my family’s eyes and every day being terrified as to whether or not I would wake up the next day. That was tough on me, you know, as a man, I’ve been married for 34 years now. I’ve got two lovely children, grandchild. I’ve always believed that my role was to provide and protect, I can’t protect or provide for-from not here.

Roderick Jefferson 1:19:14
That was the hard part. Remember when I came home from the hospital laying on the couch and thinking, if it’s crazy stuff that goes through your head, if someone busted the door down now and ran into my house, there was nothing I could do, nothing. And so what it did for me was it opened up, I’ve never really considered myself to be religious, but it opened up a whole different level of spirituality for me, and also, I realized that every time I tried to drive the bus, proverbially of life, I hit a wall or a tree, which I include the stroke.

Roderick Jefferson 1:19:54
But I realized when I sit in the passenger side and I let the. God, drive, I’m realizing how beautiful the scenery is that I missed out on by just trying to always be in control, always be in on top of things. Now it’s not about power, control, any of that, it’s literally about enjoying now, I’m not saying I live in its utopia, but things that used to frustrate me, I’ll admit it, I had a really, really bad problem with road rage, especially here in San Francisco, Bay Area.

Roderick Jefferson 1:20:35
Now, things that used to just infuriate me, they don’t even hit my radar anymore, not at all, I’m like ‘Wow, could be worse. And I’m reminded every time I drive past my hospital, it could be a lot worse, right?

The Lessons From The Stroke

Bill Gasiamis 1:20:55
Yeah, what is something that stroke has taught you? I know we’ve spoken a lot about the lessons, but what’s something that stands out?

Roderick Jefferson 1:21:06
What stands out for me is personally, we do all of the things we do professionally to again, provide and protect and take care of your family, but everything that I was doing was actually taking me away from them more, and I was too egotistical to even see it. I was loving being on the road. At one point, I was seeing beautiful places. I was going everywhere. I remember my kids got older, and they’re like ‘Dad,sure, we loved Hawaii.

Roderick Jefferson 1:21:33
We loved having a really nice, affluent life, but we would have wished that you were home, my friends dads are at our basketball games, our cheerleading pieces, our dancing competitions. I’m looking around like, where’s my dad? I miss my daughter’s eighth grade graduation. I was in Paris. It was a beautiful view, but she’s 34 now, and she still will never let me forget that. I mean, so now it goes back to being present.

Bill Gasiamis 1:22:07
There’s people listening who in to learn from our discussion, and they’re probably all, all over the spectrum of stroke and then recovery. Would you like to tell them? What kind of wisdom is this something that you could impart for the people that are where we’ve been before.

Roderick Jefferson 1:22:37
It’s going to get dark, gonna get really dark. Don’t give up because there’s somebody counting on you to get back, and if you remember your why, you’ll keep fighting. And like both you and I have talked about for the last hour, the lesson that comes out of your stroke may not be for you, it may be for everyone else around you, or people that are watching and paying attention that you don’t even know exist, don’t let them down.

Bill Gasiamis 1:23:16
Yeah, that is a very cool answer that’s kind of like the what kind of example, do you want to lead? Do you want to be the terrible example of how you go about recovery and how you overcome things? Or, do you want to be the example of, say, your loved ones are watching, or your grandkids are watching. You want to be the example of when they go through something terrible in their life, which inevitably they will.

Bill Gasiamis 1:23:50
They’ve got a a previous experience that they can reflect on and go, Well, okay, that’s how that person handled them. I wonder if I could perhaps go down that path, then one of those really terrible ways of handling a diversity.

Roderick Jefferson 1:24:10
Absolutely, I firmly believe that legacy is what happens when you don’t care who’s watching, because you’re just being real, an optimal dig, that’s legacy, everything else is brand and marketing at this point.

Bill Gasiamis 1:24:29
Thank you so much for being on the podcast, for reaching out and for connecting with me and sharing your story.

Roderick Jefferson 1:24:35
Thank you so much. I truly appreciate it.

Bill Gasiamis 1:24:38
That brings us to the end of episode, 325 I hope Roderick Jefferson’s story of surviving a near death ischemic stroke inspired you as much as it did me. His resilience and determination and journey of post traumatic growth offer hope for anyone navigating the ups and downs of recovery before we wrap up, I want to give a heartfelt thank you to everyone who leaves comments on the YouTube channel every single day, you are part of what makes this community so special, and your words often touch the lives of stroke survivors around the world.

Bill Gasiamis 1:25:14
I also want to acknowledge the almost 50 people who have left the five star review on Spotify and the many more who have done the same on iTunes, Your support makes all the difference helping others discover the podcast and offering them the same encouragement you found here. If you haven’t already, please consider leaving a five-star rating on iTunes or Spotify, and for those watching on YouTube, remember to like, comment and subscribe to stay updated on future episodes. And finally, if you’d like to further support the podcast, head over to patreon.com/recoveryafterstroke.

Bill Gasiamis 1:25:47
Every contribution helps us bring more stories like Rodericks, to those who need hope and guidance on their recovery journey. If you’re a stroke survivor with a story to share, I’d love to hear from you. My interviews are relaxed and unscripted, so just come as you are. You can also visit recoveryafterstroke.com/contact. If you’d like to sponsor an episode of the show, please get in touch. Thanks for joining me on the podcast today, and I can’t wait to see you on the next episode you.

The post Surviving an Ischemic Stroke: Roderick Jefferson’s Journey with Hypertrophic Cardiomyopathy and Recovery appeared first on Recovery After Stroke.

Many stroke survivors experience a crisis of meaning during recovery, questioning identity and purpose. This moment of loss can lead to profound growth and a rediscovery of life's deeper meaning, turning adversity into a new beginning.

The post The Crisis of Meaning in Stroke Recovery: Transforming Adversity into Personal Growth and Purpose appeared first on Recovery After Stroke.