The Hidden Dangers of Anabolic Steroid Abuse and Stroke

Introduction

The pursuit of peak physical fitness can sometimes lead individuals down a dangerous path. While anabolic steroids are often marketed as a shortcut to strength and muscle gain, their misuse can have catastrophic consequences. One of the most serious risks associated with anabolic steroid abuse is stroke—a life-threatening condition that can result in lasting disabilities or even death. This article explores the connection between anabolic steroids and stroke, weaving in Jonathan’s story as a cautionary tale to highlight the severe health risks involved.

Understanding Anabolic Steroids and Their Effects

Anabolic steroids, also known as anabolic-androgenic steroids (AAS), are synthetic substances designed to mimic the effects of testosterone. They are used medically to treat conditions such as delayed puberty or muscle loss caused by diseases. However, when abused for athletic or cosmetic purposes, these substances can lead to a range of harmful effects, including increased blood pressure, cholesterol imbalances, and heart problems—all of which elevate the risk of stroke.

Jonathan’s Story: A Sobering Reality

Jonathan Karmaou, a fitness enthusiast and family man, began using anabolic steroids in his 40s to achieve his ideal physique. Like many others, he was drawn to the promise of quick muscle gains and a chiseled appearance. However, the allure of anabolic steroids masked the silent damage being done to his body. Jonathan’s choice to stay on extended cycles—ignoring the recommended break periods—led to dangerously high blood pressure.

Despite experiencing warning signs, Jonathan continued using steroids. Eventually, this led to a hemorrhagic stroke caused by a ruptured blood vessel in his brain. Doctors gave him a grim prognosis: 77% of people with similar strokes do not survive, and the majority of survivors face severe disabilities. Against the odds, Jonathan survived, but the stroke left him with mobility challenges, slurred speech, and a new understanding of the risks he had taken.

The Connection Between Steroid Abuse and Stroke

Steroid abuse can increase the likelihood of stroke through several mechanisms:

1. Elevated Blood Pressure: Steroids can cause hypertension, which puts excessive strain on blood vessels, increasing the risk of rupture or blockage.
2. Thickened Blood: Steroids can promote the production of red blood cells, leading to thicker blood that is more prone to clotting—a primary cause of ischemic strokes.
3. Cholesterol Imbalances: Steroids often lower HDL (“good” cholesterol) and increase LDL (“bad” cholesterol), contributing to atherosclerosis and narrowing of the arteries.
4. Heart Enlargement: Prolonged steroid use can lead to left ventricular hypertrophy (heart muscle thickening), which disrupts normal blood flow and increases the risk of cardiovascular events.

Jonathan’s experience highlights how steroid abuse can turn a seemingly healthy individual into someone grappling with life-threatening conditions.

Steroid Abuse Risk Factors

Certain behaviors and conditions can exacerbate the risks associated with steroid abuse:

• Extended Use Without Breaks: Continuous cycles of steroids, as in Jonathan’s case, leave little time for the body to recover.
• Stacking Substances: Combining multiple types of steroids amplifies their negative effects.
• Ignoring Warning Signs: Symptoms such as high blood pressure, severe headaches, or vision changes should never be ignored.
• Pre-Existing Conditions: Those with a history of cardiovascular or neurological issues are at even greater risk when abusing steroids.

Lessons from Jonathan’s Recovery

Jonathan’s journey post-stroke has been one of resilience, learning, and transformation. With the support of his wife and family, he has embraced a healthier, drug-free lifestyle and has become an advocate for raising awareness about the dangers of steroid abuse. His story serves as a powerful reminder that while fitness goals are important, they should never come at the cost of your health or future.

A Final Thought

The risks of anabolic steroid abuse extend far beyond the gym. The pressure to achieve a certain physical ideal can lead to decisions with irreversible consequences. Stroke is a devastating outcome that no amount of muscle gain can justify. For those considering steroids, Jonathan’s story is a sobering example of the potential dangers. Always prioritize long-term health over short-term results.

Cited Resources

• American Stroke Association: stroke.org
• National Institute on Drug Abuse: drugabuse.gov

Stroke Foundation (Australia): strokefoundation.org.au

Steroid Abuse and Stroke: Jonathan’s Inspiring Road to Recovery

Jonathan’s story of overcoming a stroke caused by steroid abuse inspires hope, resilience, and recovery insights for stroke survivors everywhere.

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Highlights:

00:00 Jonathan and Brittany’s Introduction and Initial Situation
04:10 Hospital Experience and Initial Diagnosis
18:46 Family Strength: Brittany’s Support and Jonathan’s Journey
20:40 The Cause of the Stroke: Anabolic Steroids
31:08 Fluffy but Loved: A 16-Year Journey of Humor and Affection
40:25 Healing, Hope, and Progress: A Journey After Stroke
49:24 Shifting Focus: From Gym Junkie to Mentor and Role Model
1:00:39 The Stroke’s Impact: Jonathan’s Transformation and Future Vision
1:02:39 Advice and Insights for Stroke Survivors and Caregivers
1:08:41 Final Thoughts and Encouragement

Transcript:

Introduction – Steroid Abuse and Stroke

Bill Gasiamis 0:00
Welcome everyone. I’m so glad you’re here, whether this is your first time tuning in, or you’ve been with me for a while, your support means the world. By sharing the podcast, leaving reviews or just listening week after week, you’re helping to create a thriving community for stroke survivors and caregivers, a space where we can all feel seen, heard and supported. Since 2015 I’ve been dedicated to bringing you free, valuable resources through this podcast, and your support makes it possible.

Bill Gasiamis 0:33
If you found value in these episodes, I’d love for you to consider supporting the show on Patreon, at patreon.com/recoveryafterstroke. Your contribution helps keep this podcast alive and accessible for stroke survivors around the world. I’d also like to take a moment to remind you about my book ‘The unexpected way that a stroke became the best thing that happened’. It has been a guide and a source of hope for many stroke survivors and their loved ones, offering practical insights and inspiration for navigating recovery.

Bill Gasiamis 1:08
If you haven’t checked it out yet, you can find it on Amazon or at recoveryafterstroke.com/book. So what did we speak about in today’s episode? Well, Jonathan and Brittany joined me to share their extraordinary journey of resilience, recovery and transformation after Jonathan survived a hemorrhagic stroke caused by anabolic steroid overuse. Jonathan opens up about the day his life changed forever, from the subtle signs Brittany noticed to his grim diagnosis at the hospital.

Bill Gasiamis 1:45
We explore the impact of anabolic steroids on his health and how they led to dangerously high blood pressure and the devastating brain bleed that followed. Jonathan also reflects on his emotional recovery battling anxiety and depression and the lessons he learned about prioritizing health over esthetics. Brittany offers powerful insights into her role as caregiver, from navigating the challenges of supporting Jonathan through recovery to balancing the needs of their six children.

Bill Gasiamis 2:20
Together, they share how humor, family, support and resilience help them find light in the darkest moments. This conversation also dives into Jonathan’s mission to raise awareness about the dangers of steroid overuse and inspire others to make healthier choices if you’re a stroke survivor, caregiver or someone interested in the intersection of fitness and health, this episode will leave you inspired and motivated. Let’s dive in.

Bill Gasiamis 2:51
Jonathan and Brittany Karmaou, welcome to the podcast.

Jonathan Karmaou 2:55
Thank you. Glad to be here.

Bill Gasiamis 2:58
Take two guys, we tried this last week, didn’t work. I’m glad to have you back here today. Jonathan, let’s start with you. Tell me a little bit about what happened to you.

Jonathan Karmaou 3:09
Yeah, man, so what happened to me? It was August, 20, 2024 about roughly 15, almost 16 weeks ago, I got up about 4am like I normally do. I normally get up, have some coffee, scroll through my phone, then I crawl back into bed with my wife, Brittany. We snuggle until about 5am and then she gets up and normally gets in the shower. I typically head to the gym. That’s our morning routine every day of the week.

Jonathan Karmaou 3:41
This particular morning, she went to the bathroom before she got in the shower, she looked in the bedroom and saw that I had not gotten up yet. So she kind of come over to me and said, “Hey, you’re not going to the gym? Hey.” And I started mumbling, really funny, really weird. And I tried to get up, but I couldn’t quite get up, so she helped me up, but I was stumbling. Really couldn’t walk, didn’t have any balance. She knew something was wrong.

Hospital Experience and Initial Diagnosis 

Jonathan Karmaou 4:10
Right then she took me in the living room, sat me down, she got the kids ready, got them off to school, and I still was acting funny, still couldn’t walk, so she rushed me to the ER. After getting to the ER, the doctor there immediately said, I think he’s having a stroke. I need to do a CAT scan. So they scan my brain. He immediately came out and told Brittany, it’s not looking good. He looks like his brain is bleeding pretty bad. We’re going to have to transport him up an hour north to this Chattanooga CHI Memorial Hospital.

Jonathan Karmaou 4:47
That’s where they have a good neurological team, and they can try to save his life. So they transported me up there. From there, I don’t remember anything. I really don’t remember anything of that morning. They transported me up to CHI Hospital in Chattanooga. For three full days I was unconscious. On the fourth day, I regained consciousness, but barely. But the doctor was in the hospital room, and he told me that I was a miracle. 77% of people with the left thalamus brain bleed like I had -I’d lost so much blood- die, they basically pass away.

Jonathan Karmaou 5:33
The other 23% are severely disabled. I’m lucky that I’m alive, and I’m going to have a tough road to recovery. At that time, he was telling me that I could not walk. I had no movement or function out of my right arm. My face was fine. I looked normal in my face. I just was very tired, unconscious. My speech was slurring still, and I could not walk, and I could not really use my right arm. And that’s when my wife came up to get me now, and we went home.

Jonathan Karmaou 6:07
They tried to get me to stay at the hospital for recovery, but the hospital being an hour away and us having six children in school, I couldn’t stay up there, and she wouldn’t be able to stay with me. So we decided. I have a gym here at home, and I decided to do recovery and therapy on my own here at home. So that’s kind of the story of the stroke happened and how we got here.

Bill Gasiamis 6:33
Brittany, in the morning at 5 o’clock. It’s pretty normal for somebody not to want to get out of bed. What was it for you that made you go back and check up on him and make sure he was okay? Because nobody I know wants to get out of bed at five in the morning.

Brittany Karmaou 6:52
Well, he has, like, a military routine, so him not being at the gym is like, it don’t happen. Yeah, I just knew, like, was wrong, you know. And then he started mumbling. I’m like, you know, it was very weird, and you don’t think, ‘Oh, well, he’s having a stroke. It’s not like ‘Oh, bless.

Brittany Karmaou 7:20
I mean, the right side of my face is paralyzed or anything like that, like you, you know, you kind of have a little knowledge on people who have strokes. And it wasn’t just like all one right side is like you couldn’t walk at all, and it’s just so I didn’t know what to think. To be honest with you.

Bill Gasiamis 7:39
Same reward seemed more dramatic than something that you could kind of let him take a rest about.

Brittany Karmaou 7:47
Yeah, no, something’s definitely wrong. I mean, he rarely even get sick.

Jonathan Karmaou 7:56
What was so devastating was when the doctor told her that she needs to get prepared for the worst, because most people don’t come out of this. That was the most devastating part, because upon getting to the ER, she just thought I was having an allergic reaction or something. She had no clue that it was a stroke, more or less a brain bleed so bad.

Bill Gasiamis 8:25
What’s it like, Brittany? Like you’ve never heard that before said about your husband, these doctors, are they being are they giving you any hope? Are they saying there’s a, like, a small chance anything? Or they’re just telling you worst case scenario?

Brittany Karmaou 8:42
I guess it was more just like worst case scenario, the hot like I said, the hospital here is not equipped at all, so they’re just by telling you when things like ‘Oh well, we got to hurry and transport them as quickly as possible. Not getting to talk to the doctor right away in the Ted Nuza Hospital, and then finally, talking to him, he’s like ‘Well, there’s so much pressure on the brain. And you know, it’s one of those things where they can’t just say ‘Oh yeah, he’ll be fine, or anything like that. Because he’s so bad.

Bill Gasiamis 9:21
They really don’t know, time they’re hoping for the best.

Brittany Karmaou 9:28
Yeah, they’re pretty much. You just have to monitor them and, you know, do another CT scan and then do an MRI and see if there’s, like if the bleeding has stopped. But we can’t do that for such and such amount of hours, and so it’s like, you just have to wait and live in fear and pray, and you know.

Bill Gasiamis 9:51
What about the children at that time? How do you tell them what’s happening? What did you go through there? Let’s take a quick pause. Here to reflect on Jonathan and Brittany’s remarkable story so far, their journey shows the resilience it takes to face life after a stroke, the power of family support and the courage to overcome immense challenges. If this podcast has brought value to your recovery or inspired you in any way, I’d love your support on Patreon, at patreon.com/recoveryafterstroke.

Bill Gasiamis 10:25
Becoming a Patreon not only helps sustain the podcast, but also allows you to be a part of a community dedicated to growth and healing. If you’re looking for additional resources, remember to check out my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It has been described as super helpful, and one reader said bill comes off so positive, his book and podcast will leave you hooked, whether you’re just starting your recovery or further along.

Bill Gasiamis 10:55
The book is available on Amazon and at recoveryafterstroke.com/book. Now let’s get back to Jonathan and Brittany’s story and hear more about how they’re navigating recovery with strength and determination.

Brittany Karmaou 11:11
Well, when they came home from school, I told my boys that I didn’t really explain to them the whole stroke thing, because I felt like they would not quite get it. I just had to, kind of like he’s in the hospital, you know, and just lightly say everything’s going to be okay. I can’t just go and tell them ‘Well, I don’t know what’s going to happen, you know.

Brittany Karmaou 11:38
And then I told my girls, since they’re older, what had happened, and trying to explain to them to see if they were even knowledgeable at you know, to some circumstance they they’ve heard, you know what a stroke is, but not knowing the details of we don’t know what’s going to happen.

Jonathan Karmaou 11:57
And again, we have six kids. We have our three girls are oldest, but one’s almost 15, one’s 13 and one’s 11. Our boys, we have twin boys, they’re 9 years old, and we have a little boy who’s six.

Bill Gasiamis 12:11
And the 15 year old’s very capable of, kind of taking over the family for a small amount of time getting the kids organized and getting it right. ‘Okay, that’s really good. So then you’re in hospital, and this is all surreal to me, because this short amount of time for you to be on the podcast since your injury, and you’re scared and all that kind of stuff is unheard of. And to be speaking to me the way that you’re speaking to me in the capacity that you have, is really fabulous.

Bill Gasiamis 12:51
Let me just make sure that what I’m trying to do is like, express how profoundly joyful it is to see somebody who’s been through what you’ve been through to be on my podcast already and in your condition. So tell me about first it’s we’re at that stage of so much pressure. We don’t know what it’s going to have, what’s going to happen. We don’t know if he’s going to get through it, and then how many days to get to the other side where. Actually, I think he’s going to be okay. How many days did it take to get to there?

Jonathan Karmaou 13:26
It was, I think on day four, I just all of a sudden woke up. I hadn’t been conscious the whole time, but on day four I woke up. The doctor happened to be in my room. He was the only one there and a nurse, and he looked at me and said, ‘Welcome back, son. He’s the older gentleman, and he looked at me and said ‘You’re a miracle, because we weren’t sure if we were going to get you back. He and that’s when he told me the statistics, 77% of people pass away.

Jonathan Karmaou 13:58
The other 23% normally either never walk again, or they’re severely disabled. And at the time, that scared me, but I was able to talk a little bit. I was able to understand, but still really fuzzy. But he told me, he said ‘The bleeding is stopped, the pressure is going down, we’re going to keep you here for a couple of weeks for rehab. And that’s when I called my wife. She came up there, and we basically told him ‘We can’t stay I’ll go home and do rehab. Just need the rest and and that’s when we went home, and being home the story is even more amazing.

Bill Gasiamis 14:41
We’ll talk about that in a minute. But what deficits were you left with? What did you have to deal with to recover from?

Jonathan Karmaou 14:49
I couldn’t really walk, I had to use a wheelchair first. My legs just would not really move. Now I could stand up, but they were weak taking steps, really hard. My right arm really didn’t have any strength, I could move it, but it didn’t have any strength, any grip strength. My left arm seemed like nothing had happened, and then, of course, my eyesight was a little messed up. Things were blurry, I felt lightheaded, and my speech was really, really slurred.

Bill Gasiamis 15:20
Okay, and you discharged yourself from hospital because it was too far, and you came home with all of those conditions.

Jonathan Karmaou 15:29
Yes, sir.

Bill Gasiamis 15:31
Brittany, what was it like having that guy, this version of your guy back home?

Brittany Karmaou 15:39
It definitely was different. But, I mean, we made it through, you know, I told him, granted, I had to keep reminding him, like every five minutes, because he would forget stuff and I’d have to repeat it. That is going to be alright, I’m going to take care of you no matter what. I pushed him around the wheelchair until he moved to the walker, I helped him with everything.

Jonathan Karmaou 16:02
Bill, I don’t want to make a joke of this, but this, we had some hilarious times too. I don’t know if you’ve ever seen that movie, 51st dates. It’s with Drew Barrymore. Well, in that movie, there’s a guy that had a traumatic brain injury, and every 10 seconds he would lose his memory and forget. And so I would walk around and say ‘Hi, I’m Tom, and then seconds later, I’d say ‘Hi, I’m Tom. So we had a little fun with it too.

Bill Gasiamis 16:34
Sounds like you had some fun with it. Brittany would have been thinking ‘Oh my gosh, has he actually forgotten who he is? Does he think is Tom, yeah, I know that movie. It’s good to observe and sort of to turn things into, to kind of create a little a little bit of light laughter about the situation, because it’s pretty serious. And if you’re going to be serious the whole time, I mean, it’s going to be really stressful. I know there’s some stroke survivors who don’t believe there’s anything funny about stroke, but man.

Bill Gasiamis 17:06
I reckon there’s tons of stuff funny about stroke. I had some moments where I was in the most sort of serious state before my surgery in 2014 and my I was in the hospital getting preparation, getting prepared for surgery, and they do all the pre tests and all that kind of stuff. And my blade had settled down just enough so that I could get to surgery. They checked us out, and then when we were doing that, when I was doing that final examination, and they sent me home.

Bill Gasiamis 17:41
It was probably about three hours worth of tests or different tests to know what they’re dealing with for surgery. When they sent me home, I started having a dizzy spell, and I started noticing all this weird stuff happening, like I was out of my out of my head, out of my brain. I don’t know what it was. It was like, really surreal kind of experience, and we go and admit, I go back from I leave the area where I was getting all the tests done, different part of the hospital, and I go to emergency.

Bill Gasiamis 18:12
And I say I was here for tests for surgery in a week, blah, blah, blah, and now I’m having an episode. I think this thing might be bleeding again, because it bled three times, and I’m not feeling well. And they initially said ‘Okay, well, you look all right, can you go and sit down on the chair, just in emergency with your wife, and then we’ll get somebody out to come and help you. I said ‘Fine. I went and sat down, and then there was this kid sitting next to me. He must have been on the autistic spectrum or something, right?

Family Strength: Brittany’s Support and Steroid Abuse and Stroke Journey

Bill Gasiamis 18:46
And he was sitting next to me, and I was holding onto the the armrests of the chair, and he was too. And every once in a while, he kind of rubbed his hand on my hand, not accidentally, kind of thing, you know, we just touched hands. And then a little while later, I heard his mom say something to the tune of ‘You were in the toilet, yeah. And he goes ‘Yes. And then she said to him ‘Did you wash your hands? And in that moment, all of my stroke symptoms went away, and the only thing I could think of was I have got to get up and go and wash my hands.

Bill Gasiamis 19:27
And I said to my wife ‘You need to sit here, wait for me. I’m going to go to the toilet and wash my hands. And all the drug symptoms, all the stuff that I was experiencing, all the blurriness just vanished, immediately vanished. I went to the toilet, I washed my hands, and I came and sat down, and then I just kept my hands on my lap, so we wouldn’t interact in that way with this young kid again. So I feel like, if you look for it, there are moments where you can make light of the situation.

Bill Gasiamis 20:01
Because I think it’s really helpful. So now the this stroke story is going to take a little bit of a turn, because we know what happened to you, we know how you got home, we know what you’re like now. But why did this happen? That’s the big question here, because it’s a very different why to why most other people have strokes. So you hear about strokes, that’s that about 80, depending on who you hear it from 80 to 90% of strokes are preventable, and that is a really staggering number.

Anabolic Steroid Abuse and Stroke

Bill Gasiamis 20:40
Which means that of the millions of people who have strokes, most of the strokes are unnecessary. It’s lifestyle factors that causes it right? And you hear about the regular lifestyle factors, smoking, drinking excessively, being overweight, not checking blood pressure, diabetes, you name it. We’ve heard them all. We know the ones that they are, but your situation was different. So tell me about what caused your stroke.

Jonathan Karmaou 21:10
Well, really quickly. I want to give it some context. It started when I was younger. I was with chubby, you know, little fat kid. I grew up with body dysmorphia, if you know what that is. And so as I got older, right around 40 years old, I had a friend that lived in Arizona, and he turned me on to steroids. So I started doing steroids about six or seven years ago, I started off with mild steroids like testosterone and some SARM selective androgen receptor modules, very mild stuff and they did good building muscle.

Jonathan Karmaou 21:55
But they didn’t give me that lean, cut up look that I wanted. I wanted to be super muscular, I wanted to look like Superman. So the past like three years, I started trying harder steroids than multiple stories and stacking stories. They call it stacking when you use multiple compounds. Testosterone has but I started using things like wind straw that helps dry you up, make you look dry and cut, I started using things like trend alone, which builds muscle, builds strength, but also makes you look extremely muscular.

Jonathan Karmaou 22:28
Every piece of food you put in you, I don’t care if it’s a donut, it’s going to your muscle cells, it’s making you muscular. The thing about these steroids are you still gotta put in the work, you still gotta lift the weights, you just heal. And it happens a lot faster when you gotta you still gotta eat enough protein and work out. So what I had done is I made the big mistake of I did a cycle about a year ago, a little over a year ago, of trembolone and Anabar and wind straw with the testosterone, and I never came off.

Jonathan Karmaou 23:03
You’re supposed to cycle it 12 weeks and then take 12 weeks off. If I would have done that, I probably would have been okay. But this time I cycled on and never came off. I started to look so good, so muscular, so cut up that I just couldn’t imagine coming off of it in my body. Because when you do come off, you do fluff up. I call it fluff up a little bit, gain a little bit of body fat, but you don’t, you don’t lose a lot. But I didn’t want that anymore. I stayed on it, and that’s what led to blood pressure shooting up sky high.

Jonathan Karmaou 23:39
I ignored it, and it kept shooting up just two or three weeks before this happened. Bill, he had me in the ER because my blood pressure was too high, and they gave me medicine. Got my blood pressure down. I went on home, and I still injected the steroids the next day. And so I asked for this, it was my fault. But yeah, the steroids took me out, it caused that artery to rupture in my vein due to high blood pressure.

Bill Gasiamis 24:08
Yeah, okay, so, Brittany, what’s it like experiencing that, knowing that this was preventable, that it should never have happened, and then watching it happen. Now, I understand that there’s some other stuff going on. This relationship is, you know, full of many different experiences and things and wife issues and husband issues and kid issues. Like, I totally get that, and I don’t want to cause, create any kind of conversation that is uncomfortable for you guys.

Bill Gasiamis 24:42
But I am curious, since on the podcast, you’re all willingly here, what’s it like being the wife of a person who a has body dysmorphia? Let’s acknowledge that, and then B also takes this path to try and improve his physique I suppose.

Brittany Karmaou 25:04
I don’t know, I have a little bit of body dysmorphia, but I would never touch anything. But it’s I would say that I was definitely not knowledgeable about steroids. I’ve never researched anything, looked anything into anything. It’s not something that like, you know, you hear some people take steroids and they’re just mean, it was nothing like that. So I’m like ‘Well, you know, but having high blood pressure and ignoring it.

Jonathan Karmaou 25:38
The real, only side effect I got from the steroids were high blood pressure. I never got mean, I never got angry, I never got violent, destructive. It didn’t do those things to me, like you hear sometimes. It made me pretty normal. Now, it did raise my libidos through the roof, which, you know, that’s one of the side effects, and it generally made me pretty calm. It wasn’t bad like that.

Bill Gasiamis 26:07
When it raises the libido, you don’t necessarily see that as a negative either.

Jonathan Karmaou 26:13
No, but it well, it can be negative like, yeah, trim alone raises your libido to where you can’t stop thinking about it. So 10, 15, times a minute, yeah.

Bill Gasiamis 26:30
Okay, so impacts the way you think, not only the way your body.

Jonathan Karmaou 26:34
Oh yes.

Bill Gasiamis 26:34
But also the way you think about it.

Jonathan Karmaou 26:38
Yep, absolutely.

Bill Gasiamis 26:40
Okay, and that was really interesting. What Brittany said, like, you didn’t know much about steroids, and he and the only thing we generally hear about is, you know, they’ve got roid rage. We hear that every so often, and that’s about the only thing I know about steroids. And you didn’t see any real major changes, and you thought ‘Well, seems to be going, okay, friends, getting the result. Yeah, just kidding.

Jonathan Karmaou 27:11
I was result driven. I got the results. Quickly she saw that, she saw how happy it made me. And I didn’t let her know all the dangers. I just told her ‘Hey, this is something I’m taking. Don’t worry about it, it’ll be okay. And then, you know, I just kept on going.

Bill Gasiamis 27:32
And when you look back now, did it actually make you happy, or was it not real happiness? It was just like a smoke screen of what you thought happiness, where you thought happiness came from.

Jonathan Karmaou 27:46
That’s right, it was more like a smoke screen. It was something I’d wanted my whole life, so I’d started to obtain it. And so that did make me happy, but it was more of a smoke screen because I knew that once I stopped taking it, I was going to lose some of what I gained.

Bill Gasiamis 28:03
That’s the hook, that’s the whole thing. How often were you training?

Jonathan Karmaou 28:11
Every day, six, sometimes seven days a week?

Bill Gasiamis 28:14
Hence, why? How many?

Jonathan Karmaou 28:21
Sometimes multiple hours a day.

Bill Gasiamis 28:25
How much are you eating?

Jonathan Karmaou 28:28
Man, probably anywhere from 8,000 to 10,000 calories a day when I was in my bulking phase to put on size, but I cut it back to about 3000 when I was trying to lean up and cut up.

Bill Gasiamis 28:42
And the bulking time is that part of that cycle where you are trying to put muscle on so that the muscle gets a larger. And then the cutting time is it time where you’re going and doing any kind of shows, or is it just summer? When is it? When do you kind of go into the cutting phase?

Jonathan Karmaou 29:09
So bulking is just like you said, you’re trying to put on more muscle mass, but when you put on muscle mass, you have to eat a lot more. So you are going to get a little bit fluffy, put on a little bit of body fat. The cutting phase is more trying to get that dry look, lose all the water you’re retaining, lose all the body fat you’re retaining. Just kind of look like a Greek god. You just you’re chiseled everywhere.

Bill Gasiamis 29:33
Yeah, that’s such a fake thing. That’s such a temporary time, isn’t it? To be like that. How long can you sustain looking like that?

Jonathan Karmaou 29:46
Well, if you’re taking the drugs, you can sustain for good if you’re on them, but if you’re off, you’ll lose most of that muscle mass, and you’ll definitely start to lose that dry look, probably within a month.

Bill Gasiamis 30:02
So when you’re looking great, you’re looking in the mirror, you’re loving it when you’re bulking up. Are you okay with the way that you look when you’re bulking up, or are you totally hating it?

Jonathan Karmaou 30:14
I’m okay with it, not totally happy with it, but okay, because I know that I’m I’m gonna put on size that I’m gonna rip up, and I’m gonna look bigger and more cut. Now, one of the other things that you get is a lot of strength. You’re talking about average guy, five foot eight, I weigh 185 pounds. Now, when I’m doing those steroids, I’m benching 500 pounds. I can’t do that now. I’m not on anything now, so I can’t do that now.

Bill Gasiamis 30:46
So what about wear and tear joints, on your joints and all that, because of the steroids, are they healing quicker? There isn’t so much wear and tear. What happens there?

Jonathan Karmaou 30:55
When you’re on the steroids, you don’t feel any pain. It’s like it’s not there, non existent. But now that I’m off of steroids, I have shoulder pain. I have joint pain. Yeah, it’s pretty common.

Fluffy but Loved: A 16-Year Journey of Humor and Affection

Bill Gasiamis 31:06
So, Brittany, you’re with a guy who for whatever reason, we’ll try and see if we can unpack the reason in a little bit, for whatever reason, looks after his body and looks great. Have you ever seen him in the time that you’ve known him, the time that he’s been a dad and all that kind of stuff, to not look great, to think ‘Oh, this guy doesn’t look good.

Brittany Karmaou 31:36
I think he’s always looked great.

Jonathan Karmaou 31:39
But pretty fluffy so.

Bill Gasiamis 31:43
Compared to who like in your eyes or like in.

Jonathan Karmaou 31:50
Well, you know, yes, in her eyes too. She knew I was chubby, so we’ve been together 16 years. I’d say the first eight to 10 years. I was a little fluffy, I was a little overweight and but she still love me.

Bill Gasiamis 32:06
That’s what I’m getting at, right? Didn’t seem to be an issue, but for you, was it always a underlying issue?

Jonathan Karmaou 32:15
Yes, yes.

Bill Gasiamis 32:17
Okay, Friday, so I’m just trying to get the psychology of the whole thing. You know, the thing that makes you make a decision, it’s like a drug. It becomes, it is a drug, I know steroids are. But we’re talking about the drug of the look, not the steroid, per se, the look and how you want to perceive yourself or other people to perceive is it about other people, how they perceive you, or is it about you?

Jonathan Karmaou 32:45
All I want other people to look at me and say ‘Wow, look at that guy. And I also want to think of that myself. But like I said, all this comes from body dysmorphia and there’s a long history of it. In my life, I was raised up with no father, my mother was a heroin addict. My mother died of a heroin overdose when I was 14. I found her dead.

Jonathan Karmaou 33:09
My entire life, I never had anybody telling me they love me. No parents to raise me. I had a deep, deep and dark childhood, and so that helped create the body dysmorphia I needed people to love me. I needed them to love what they saw that would help me love what I saw. And that was the reason for the body dysmorphia.

Bill Gasiamis 33:32
Brittany, is this the same guy that you knew just a few weeks ago talking this wisdom, literally a few weeks ago, was it? Yeah, that kind of stuff from coming then, yeah, he’s changed heaps. It sounds like the old you wasn’t considering any of these things. It sounds like you’ve changed heaps in that time. Is that right, Brittany?

Bill Gasiamis 34:09
That’s a great turnaround. I mean, I’m trying to emphasize that for the purpose of how quickly things can change, how quickly your mind can kind of fall into line and give you, give you information and wisdom that you didn’t have before. So how are you how do you see yourself different? How have you sort of noticed that transition?

Jonathan Karmaou 34:30
Well, one thing is doing the steroids. Most of what I gained from doing the steroids has not gone away. I’m still in good shape, just not as muscular, not as strong, but the perspective I’ve gained is I’m almost 50 years old. I got a loving wife. I’ve been with her for so long, and I have six children with her, and they’re all, I’m all they got, and I have to provide for them and take care of them.

Jonathan Karmaou 35:01
And the thought of not being here and them struggling without me scares me, and so I’ve made it a mission of mine to stay healthy, to eat right, to not do any nicotine, not I’ve even cut back where I don’t even drink caffeinated coffee. I drink decaf. I’m gonna change this. I feel like this is the second half of my life, and now’s the time to do it right.

Bill Gasiamis 35:26
Yeah, you know, with all the dramas of your life, being a young kid of 14, discovering what you discovered, being without your Dad, did you have any support during that time from any other extended family, from counseling services. Did you go? Did you have any support whatsoever?

Jonathan Karmaou 35:47
No, my mother sent me to counseling services to get medication that I was supposed to take for issues I had as a child. But the medication was not for me. My mother would take them and sell them and then shoot them up, you know, do dope with them. So I didn’t really have a support system.

Bill Gasiamis 36:09
So has it been what’s life like been after you became an adult? Have you been able to transition into work properly at the beginning of this sort of after you’re 18 and all that kind of stuff. How did you kind of move out of that teenage phase where you’re meant to be unruly, crazy, not listening to anyone, when you have your parents around, but you had to do without your parents. So what was that transition like for you into adulthood?

Jonathan Karmaou 36:40
I’ll let you know a little secret. I don’t tell many people, but since we’re here, I’ll tell you, it took it was a hard road at 17 years old, when my mother died, I found out that somebody shot her up with too much dope and robbed her. Well, I ran into that person when I was 17 years old and almost killed him. I went to prison for 10 years. I didn’t get out till I was 26 years old, and that’s when I made the transition I was I told myself ‘I’m too young for this, I can’t be a criminal.

Jonathan Karmaou 37:16
I don’t want to go down the same path my mother went down. And I changed my, I turned my life around. Started studying information technology, studying computers, and then I got my first job, doing help desk, and I worked my way up to now. I work for a software company, and I’m a senior director of digital transformation now. So it was a long, hard road. I had to start from the bottom, but everything about me was about ‘Hey, I’m not supposed to be here. I’m going to prove them I am supposed to be here.

Jonathan Karmaou 37:51
And I met my wife early in that journey, and she supported everything I did. We had to move, we moved from Virginia to California to New York to Texas to Florida twice. I mean, we’ve moved around a lot, and she’s been pregnant most of that time, but she still supported me, because I could not stay in the environment that I grew up in. I had to get away and start over new.

Bill Gasiamis 38:20
Yeah. Now that is intense, you to be commended. It sounds like though your dramatic moments in your life are really important for you to turn the next page and create this next chapter. You know different version of yourself, and you seem to really learn from your mistakes, based on what you’ve already described about what happened to you only a few months ago and also many years ago.

Bill Gasiamis 38:55
So Brittany, from your perspective, where are things at now? What other things that you need to pay attention to and support for, like, what’s left with regards to the stroke that needs to needs the continued support.

Brittany Karmaou 39:16
Just life.

Jonathan Karmaou 39:19
Yeah, one, a couple of you know, I make a joke of the stroke and the recovery, but early on, it’s been almost 16 weeks. So when I say early on, it was more like I was four weeks after the stroke, I started to experience a lot of anxiety and a lot of depression came with it too, and I’ve never had anxiety or depression ever in my life, really, that I can remember. But all of a sudden I start worrying about everything, what I’m eating, am I going to have another stroke?

Jonathan Karmaou 39:52
You know, so much worry, and that turned to depression. Some days I’d wake up and I feel like there’s the in total despair, like, what is there left to live for? And this beautiful woman right here pulled me out of it every single time she made sure that I knew ‘Hey, you’re loved, you can’t go anywhere, you’re going to be okay. And that was the most important thing I needed. Then I don’t have any real anxiety anymore depression, but that was one of the toughest things I experienced since recovering from the strength.

Healing, Hope, and Progress: A Journey After Steroid Abuse and Stroke

Bill Gasiamis 40:25
So, I am honestly, like, I’m in a bit of situation where I’ve never been before. Things seem to have progressed really well, very short amount of time where, what are the doctors saying about this blood vessel now, about the bleed, about your blood pressure. Where is all of that?

Jonathan Karmaou 40:46
Well, from what the doctor said, they did more CAT scans. They’ve done more checks since the stroke, and they said ‘Everything looks good. There’s no blockages, there’s no plaque buildup, because I’ve been paying a lot of attention to cholesterol, and I’ve gotten scanned from head to toe, just looking, are there any plaque filled up, anything narrow blood vessels and nothing, everything looks good. So everything with in my brain looks good, everything through my body.

Jonathan Karmaou 41:14
The blood pressure was running really high at first. It’s now stabilized, not because of lifestyle. I’m eating right, drinking right, doing all the right things. It was mainly because I was anxious. I had a lot of anxiety, and so that was shooting my blood pressure up. Now I’m on blood pressure medicine, but it’s stabilized. Now I’m not I don’t have as much anxiety or anything like that. So right now, I feel like I’m as healthy as I’ve ever been.

Brittany Karmaou 41:42
And that lesson, and God came with more recovery. It’s like ‘Oh, today I wake up and I feel clear. And, you know, my sight is good, the lights aren’t bothering me. It’s like that progress and like ‘Oh, I am getting better. I’m not going to have another stroke. And, you know, and then it’s like, and she’s there to reassure getting better and better every day.

Bill Gasiamis 42:08
So as the as things improve, as the risk perhaps decreases, as everything starts to stabilize, then the mind can be eased, and then with a little bit of support and a little bit of encouragement, then those thoughts can go away. Then that makes sense that anxiety is kind of around when you’re unwell. Completely makes sense that it’s part of that illness. And many stroke survivors comment about exactly the same thing will happen on the stroke.

Bill Gasiamis 42:40
And kind of put themselves in a situation where they’re overthinking all the things which is very normal and and that’s good. That means that you’re able to be around for your family and for your wife and for everybody that needs you and loves you, and where, where are you at with the body dysmorphia, part of the whole journey? How do you think about that?

Jonathan Karmaou 43:07
Now, I honestly do not even think about it. The thing is, Bill, I started going back to the gym, and I have a gym at home, and now I’ve gotten my weight back up to around 185 I’m still about 20-25, pounds lighter. But as I look in the mirror and I’m lifting weights, the same veins still pop out, the same muscle, and I’m like ‘Wow, I still got it. I don’t need body muscle. I look good, and I’m no drugs, no stimulants, no anything. I’m just going to do it all natural.

Bill Gasiamis 43:42
That’s it perfectly, that’s good, that keeps you healthy, that keeps your muscle mass, that keeps you strong, that does all the amazing things that being physically active always. Did you know?

Jonathan Karmaou 43:54
Did you know what else? I want to talk to people. I’ve decided that I want to get out there and start to speak, to tell people what happened to me, the dangers of using steroids, the dangers of using some of these supplements, let them know my story and what I went through, and hopefully help somebody else one day.

Bill Gasiamis 44:19
I think that’s really important, lot of stroke survivors do that. They want to reach out and make sure people know about the risks of whatever it was that they were doing that caused their preventable stroke. For example, I’ve interviewed a couple of guys who’ve had damage to their carotid artery as a result, I think it was the karate artery as a result of jiu jitsu choking. So they’re in Ju-Jitsu, they’re training, you know, they’re practicing, and they’re competing.

Bill Gasiamis 44:51
So in the compete, in the competitions, either the opponent is trying to choke them out, because it’s a quick way to get a tap out. So, in training, they’re practicing choking people out. I mean, I can’t think of anything more stupid, to be honest, than practicing to choke people out. Now, the couple of guys that I interviewed had some damage to the back of their necks. And as a result of that, they had a stroke.

Bill Gasiamis 45:23
And as a result of that, you know, they went through a lot of the dramas that we’ve always already spoken about on this podcast episode and many others before this. And they wanted to reach out and make sure that they told people of the dangers of Ju-Jitsu, that part of it specifically where there’s a lot of blunt force trauma, there’s impact to the arteries, and people don’t realize how sensitive they are, and what they were experiencing was dissections.

Bill Gasiamis 45:52
So the inside of the artery was just tearing off a little bit, and it was creating a little flap. Now there’s nothing wrong with the artery. It’s not going to break and bleed or anything like that further. But that little tear inside that creates the flap inside the blood vessel changes the blood flow and causes clots. That was that’s the only thing it does. Sometimes it heals by itself, it goes back and it goes back to position. Other times it needs to be clipped. But the guys reach out. We need to tell people about this thing.

Bill Gasiamis 46:22
Because nobody talks about the injuries that are associated to the brain after Ju-Jitsu. So that’s common, and I really like the fact that you reached out for that reason and also prepared to tell me about things that a lot of people wouldn’t be prepared to tell somebody on a podcast that goes worldwide, you know, now, with regards to the steroids, are there any withdrawal symptoms? Do you notice anything other than how much you can lift, etc? Do you notice the body kind of needing to reset?

Jonathan Karmaou 46:59
The body kinda reset it. First, my strength went down really low. I wasn’t sure if it was due to the stroke or was it just because I came off the steroids, but my strength went really low, so I’ve had to reset and build that back up. Now it’s come comes back pretty quick, it’s called muscle memory. It came back pretty quick. I’m still not as strong, I probably will never be as strong as I used to be, because I’m going to be clean now.

Jonathan Karmaou 47:26
But there is a part two, coming off steroids that’s mental as well before, prior to the stroke and I was on the heavy steroids every day and working out every day, and my wife can attest to this. I lived and breathed body building. I lived and breathed lifting weights. I looked in the mirror constantly. It’s all I thought about, it’s all I did. And man, you know that part of my life’s gone now. It’s different.

Jonathan Karmaou 47:57
So there wasn’t a tad bit of depression at first, not doing that anymore, not having anything like my goal was to be super strong, super big, super muscular. Now that’s not my goal anymore. So I had to refine myself. I had to find new goals, new hopes, new things to do with my time and because sitting around just makes you depressed.

Jonathan Karmaou 48:21
So now I’ve put my focus into let’s go out and help other people. You know, I can stay in shape going to the gym. I’m almost 50 years old, I don’t need to be big and, you know, bodybuilder anymore. Let’s go out and help people.

Bill Gasiamis 48:39
Yeah, would you say there’s a little bit of OCD in that level of trying to build weight obsessive compulsive disorder? Is it? Because it seems like it’s an OCD kind of pursuit in that, oh my gosh, you know that that muscle is not popping the way it needs to the one that no one else has ever seen. Brittany, it was, was he? Look at my back. Tell me what it looks like all the time.

Brittany Karmaou 49:11
Yes, take a picture of my back. Let me see I’m like, it looks good.

Jonathan Karmaou 49:17
Yeah, even when it looked good, I could find issues with it. So, yeah, it’s definitely OCD a part of it.

Shifting Focus: From Gym Junkie to Mentor and Role Model

Bill Gasiamis 49:24
So that I and then the transition I can imagine is very different. You were focusing on nothing but your body the gym. You were a gym junkie, basically, yeah, and what are you focusing on now? Where are your thoughts now? Who are they on now?

Jonathan Karmaou 49:42
Well, I work in technology. I’m focusing now on growing my knowledge in technology, again, because it’s a never ending learning thing you have to do in technology. I’m focusing on helping my company. I’m at a director level. I can be a President, Vice President, one day I have the wits about me, and now I’m focusing my time on I want to help people. I want to put the news the message. Not only want to do I want to help people that are thinking about or doing steroids, the dangers.

Jonathan Karmaou 50:17
I want to help people, coaching them, mentoring them in real life. There are a lot of kids out here that have went through what I went through, not having parents, having a deceased parent, living on the streets, being poverty stricken. Well, I come from all of that. I’ve seen nothing but violence, drugs, sexual abuse, things like that as a kid. And there’s gotta be kids out there that I can reach and help get through that.

Jonathan Karmaou 50:41
There’s adults that’s that are hooked on drugs, that are they’re doing having substance abuse issues that need somebody like me to to mentor them and coach them along. And that’s where I really my passions there. I want to help these people.

Bill Gasiamis 50:57
Seems like you’re a good guy, generally speaking, and I haven’t known you for much so, like, it just seems that way. So I’m gonna, I’m very comfortable saying it. Brittany seems like an amazing, supportive person as well. 6 kids, it says a lot about you guys. I can’t, I could barely deal with 2 kids when I was a dad. So to land 6. So my hat goes off to you guys for that. That’s an amazing accomplishment. And one of the things that I’m very conscious of is this the example that I’m setting for my kids.

Bill Gasiamis 51:33
Because they’re boys. They were teenagers when I was going through my illness, like the real serious part of it. And I kind of felt like, how do I want the example to be about how I’m going to go through the recovery? And, you know, because I could go through it really badly, I could be really annoying and terrible and make it all about me, and, you know, not take other people into consideration. And of course, when I had a stroke, it’s not just me that has it.

Bill Gasiamis 52:06
Everyone goes through it, the whole family, extended family, etc, when you were going to the gym and doing the weights, if your kids had come to you and said ‘Hey, I’m going to go to the gym and start shooting up steroids. Would that have been okay with you? Would you have?

Brittany Karmaou 52:26
No.

Bill Gasiamis 52:27
No, Brittany immediately. I didn’t even finish the sentence, and Jonathan, though as well. But that’s the thing about it is, is that the dysmorphia part of it sort of stops you from seeing that thing that you wouldn’t let your kids do. That’s not okay for them, it was still okay for you.

Jonathan Karmaou 52:47
Yeah. I mean, I knew the dangers of steroids, but I kept doing them because of my own issues. Now, for my children, they did. They went to the gym with me, they worked out with me, they always asked to go with me and I took them, but there was never any speaking of steroid use or supplement using. They’d see me make my morning shake, but that’s about it.

Bill Gasiamis 53:10
Yeah, and did they learn later that this is the reason why I ended up in hospital? Have they learned that yet?

Jonathan Karmaou 53:18
No, they don’t know anything about steroids, and I’m going to try to keep it from them as long as I can, when one day when they can understand, I’ll let them know, but that is a long time from now, I just let them know I had a stroke, and I’m still training and still working hard. Now I get excited about my milestones, and when I make accomplishments, I’ll let them know about that. And my little boys, 9 years old, they come up to me and say ‘Ain’t no stroke going to keep you down. So that’s great, that’s a feel good moment.

Bill Gasiamis 53:50
Yeah, what happens if they stumble on this podcast interview? And for some reason, your teenage kids, which they probably never will, but decide to actually listen to it and go, beginning to end.

Jonathan Karmaou 54:04
Well, my girls, are the only ones as teenagers now, and I’ll let them know really quick that do steroids if you want, you’ll be looking like a guy.

Bill Gasiamis 54:16
No, I’m not talking about that. I’m talking about if they come across this interview and hear what their dad did.

Jonathan Karmaou 54:24
Yeah, to be honest with you, they’d probably be a little upset with me that I put myself in that kind of danger. But you know, we’re a tight family, like I said, it’s me and her and the kids, that’s all we got. We have no other family, and we’re tight knit, so they realize that ‘Hey, we might make mistakes, but we’re going to move forward. We’re going to move forward.

Bill Gasiamis 54:51
Yeah, everyone makes mistakes. The thing about mistakes sometimes is, you know, they end real bad, there was no intention to, right. And that’s the thing about steroids, I know there’s a lot of stories about people who have really made themselves unwell or not made it through some kind of a medical complication as a result of of that.

Bill Gasiamis 55:17
And it’s such a good thing to have you here to share that story, to learn your lesson, to look at new ways to I say, I suppose, give energy to that part of you that needs to give energy some it sounds like you’ve got an excessive amount of energy. If you just focus on the wrong thing, it might go there. But if you focus on the right thing and it goes there, then amazing things can happen, like have already happened, right?

Bill Gasiamis 55:44
Some of those amazing things include your wife, your family, your kids, clearly, a lot of that energy at the right time was put in the direction of something amazing, and that proof is in the pudding, the outcome is great. And then that you stray off a little bit, and you don’t realize that you’ve strayed off, and you’ve just gone down that little direction that you thought that’s not a big deal.

Bill Gasiamis 56:07
You’re going to start down there. But you know that, you know taking a one degree shift off course at the beginning of the journey doesn’t seem so bad, but 10 years down the track, that one degree you know has gone so far off course, you’ve got no idea how you even got there.

Jonathan Karmaou 56:24
Yeah, Bill, I’m one of those people. My personality is, if I’m going to do it, I’m all in. So if I’m going to do something, I’m all in and passionate about it. So I was that way about steroids at one time. Now that I know that I will never do it again. The opposite. I’m completely passionate about not doing it, making sure that I stay clean and do it naturally.

Bill Gasiamis 56:51
I like the sound of that, and that probably ends up becoming passionate about advocacy, about being against steroids and not doing steroids and training naturally, because you can influence a lot of people going into that potential path before they get there, or even if they’ve just entered, you could potentially help get them out.

Bill Gasiamis 57:15
Because, you know, the underlying reason that it’s happening for a lot of people, it could be body dysmorphia. Do you think that’s a big thing in the gym? Is Body Dysmorphia a huge thing in the gym that people aren’t speaking about?

Jonathan Karmaou 57:29
Yes, I think it’s huge. I think a lot of people have body dysmorphia. They don’t talk about it. But here, in the past 10 years or so, the epide, I call it an epidemic of steroid use, because you got kids now, 16, 1718, that young doing steroids, not because they’re fat, not because they’re underweight or don’t have the potential. Actually at that age, they had the highest potential. Their testosterone levels are so high at that age, that they could build that muscle without drugs. But they want it all, and they want it now.

Jonathan Karmaou 58:07
And there is an epidemic going on of using, I call it peds, performance enhancing drugs. And they’re using everything out here now, everything, and it’s given them a lot of danger. Not only that, I have a stroke and have those health complications from using steroids, it also made my heart thick, the lining of my heart thick. I had heart problems at first, and I had to take medication to get my heart back right at a normal level, and they said that it would be congestive heart failure if I didn’t stop.

Jonathan Karmaou 58:46
And they said they’re glad I stopped. They give me medication now my heart is strengthened back and came back, and it’s doing well now. But steroids not only have dangers with blood pressure and brain and artery, you have serious, serious complications with your heart.

Brittany Karmaou 59:04
And you really don’t know what you’re injecting into yourself, who you’re getting it from. You can’t trust people, companies. You could be just injecting poison into yourself. Yep, very true.

Bill Gasiamis 59:18
Yeah. And these kids, if they’re starting off that young, they’re interfering with their reproduction. They must be interfering with all sorts of things.

Jonathan Karmaou 59:29
Yes, by doing testosterone. And see when you’re doing steroids, testosterone is always the base. You have to have a test, because most of the steroids, the regular ones, it’s the pressure testosterone. So when you start doing testosterone, guess what it does? It cuts off your ability to make your own natural testosterone. So no more babies can’t make babies anymore. You’re shooting, they call it shooting blanks, and you can’t make and then even if you come off of the testosterone, it is extreme.

Jonathan Karmaou 1:00:00
Only difficult to ever produce your on your own anymore. So you might not ever be able to have kids. You might shut your testosterone forever. And if you take too much testosterone, it can have an adverse effect. It can cause gynomasia, which is guys form breast tissue and also it can make you retain a lot of water, which can drive your blood pressure up. It can do a lot of things. So steroids are just they have a lot of complications, and most of these kids out here now are taking them and don’t even know what they’re doing to themselves.

The Stroke’s Impact: Jonathan’s Transformation and Future Vision

Bill Gasiamis 1:00:39
Yeah, yeah. Well, man, I’m glad you reached out and Tom your story, I’ll be happy to share it and let people know the risks and then, and then, I hope that, hopefully that becomes that sort of foundation for you to take this to the next level and spread the message more in whatever way that you choose to do. So, as we’re coming to the end of the episode, I want to ask you three questions that I ask stroke survivors.

Bill Gasiamis 1:01:11
Brittany can answer these as well, because I’ll ask them, and she can answer from the perspective of a caregiver. But for you, first, Jonathan, what’s the hardest thing about stroke so far?

Jonathan Karmaou 1:01:28
So far, the hardest thing has been the depression and the anxiety and wondering, What am I going to do next? Am I going to survive this? Is it going to happen again?

Bill Gasiamis 1:01:44
Yeah. And Brittany, what about you? What has been the hardest thing for you to go through while your husband was unwell?

Brittany Karmaou 1:01:53
I would say just the unknown at first and then having to like, suppress my own anxiety, till I do the things to help his anxiety and depression.

Bill Gasiamis 1:02:09
So you got to kind of put yourself on pause for right now, stay in the holding pattern, get him over the line, and then get back to yourself, I imagine, at some stage, and sort of start supporting yourself again? Yeah, so this is a big question for you, Jonathan, because it seems like you’ve already spoken about these things, but what have you learned about your stroke or not about your stroke? What has stroke taught you?

Advice and Insights for Stroke Survivors and Caregivers

Jonathan Karmaou 1:02:39
Yeah, it’s taught me one why I had the stroke, and why did I do those things to begin with, I was a normal, healthy, male, beautiful family wanted to do those things. So it’s taught me to look for other ways to, I don’t know, do things with my time, to care more about myself, put my family above myself, you know, my body dysmorphia. And I’ve learned a lot of scientific information on what a stroke was, how it happens, the different kinds and ways to keep myself healthier, what to prevent. And that’s one of the key things I’ve learned.

Bill Gasiamis 1:03:22
What has this time taught you? Brittany.

Brittany Karmaou 1:03:32
Having more empathy for you just never know what somebody’s going through. I mean, you really don’t. You can look totally normal and it can be going through a worse situation. You just never know.

Bill Gasiamis 1:03:49
And that’s a interesting thing about people who have strokes with deficits that aren’t visible. For example, if their hand is not injured, or the leg is not injured, if they’re walking, they have what they call invisible deficits, right? And it’s me and my left side hurts and it feels different. My balance is, you know, but you see me in the street, you wouldn’t have a clue. And it’s really hard trying to convince somebody you’re having a really bad day when you look great as like.

Bill Gasiamis 1:04:19
The words don’t match the appearance, and it’s like, oh my god, this is so hard, so hard to to convince anybody of anything. But I appreciate what you’re saying. So this is also an interesting question. You could probably talk on this for an hour, which you already have, but I’m going to ask it again anyway, there are other stroke survivors and other people that are listening to this podcast, and they’re trying to get a tip or some advice or some wisdom or whatever they’re trying to gain from it. Right?

Bill Gasiamis 1:04:57
What do you? Jonathan? Want to tell the. Stroke Survivors about their journey, and perhaps some other people who may be listening because they’re they’re in the gym, and they found out about you, and now they’re listening to this podcast. What’s the message for the stroke survivors, and what’s the message for people who are not structure wise.

Jonathan Karmaou 1:05:23
Really four different words, resiliency, perseverance, strength and family. You gotta be resilient. You can’t stop. You gotta go. You gotta grind. You gotta keep working as hard as you can and not stop. It’s all about repetition and staying staying with it, and keep working hard, perseverance, knowing in your heart that you’re going to persevere and make it through this. You’re going to do whatever it takes, and you’re going to get through it strength.

Jonathan Karmaou 1:05:55
The strength to get up every day, to face the world with your limitations, with your injuries, anything that’s going on, knowing that you can do it and you’re going to make it passive and being strong. Don’t lay down for anybody. Just keep moving forward. And then family. Look for your family. Look for the people that love you the most, to support you. Stay around them.

Jonathan Karmaou 1:06:17
They’re going to help you get through the rough moments, the anxiety, the depression, things like that. I had my family. This is the only family I’ve got. And if it weren’t for her, I don’t know if I could have made it through so family is so important. That’s what I would tell each and every survivor out there before.

Bill Gasiamis 1:06:34
I ask Brittany. Something came up while you were saying that, that’s awesome. What you’ve said those four words, um, was steroids, a short route to something that you could have done that was harder to do. Do you know how you kind of mentioned you put the hard work in, etc. Were you trying to take a short path to that, or were you also doing the hard work and then trying to just take another path? What was that like?

Jonathan Karmaou 1:07:05
Well, again, doing steroids, it helps you get there quicker, but you still gotta put in the hard work. You still gotta lift heavy and all these things, but yes, definitely trying to get there quicker. I didn’t start till I was 40 plus years old, and I was like, Well, I’m behind as it is, so let me get a little help to move ahead faster.

Bill Gasiamis 1:07:26
Okay, so that was part of the motivator, okay, yeah. And Brittany, from a caregivers perspective, a wife’s perspective, what, I don’t know, what, what? What would you like to kind of leave for people to consider after what you’ve been through.

Brittany Karmaou 1:07:50
Never give up. There’s always a better day ahead. Don’t, yeah, don’t take the hard road. Don’t take the quick and easy thing.

Jonathan Karmaou 1:08:03
As a caregiver. What would you tell other caregivers? Yeah, how should they be? How should they treat the situation? Because bill a lot of a lot, a lot of times, I see people in stroke groups where their caregiver laughs at them or makes fun of them or doesn’t quite the invisible injuries like you were talking about. They don’t quite see them, so they’re like, Oh, you’re not in pain. Get up. You look fine. Well, you know, you gotta have somebody really understanding and loving to help you through those times.

Brittany Karmaou 1:08:32
Well, that’s just sad, because I don’t know who would say those things to their loved ones or even a stranger, but, yeah.

Steroid Abuse and Stroke: Final Thoughts and Encouragement

Bill Gasiamis 1:08:41
Ignorant people often not willingly ignorant, just people like I was before true, just ignorant of other people’s experiences, because I was too wrapped up in my own experience. And then I spent some time in a wheelchair, and I realized, oh, people in a wheelchair aren’t just sitting down. There’s a lot more going on. And yeah, I had no idea. And then when I found myself in one and had all the limitations of somebody who’s in a wheelchair, it was like, oh, man, I was an idiot. I had no idea what I was doing.

Bill Gasiamis 1:09:19
So that’s, that’s that’s the kind of people that do it, people that are just don’t know any better. It’s great that you’re more aware and you’re more empathetic. It’s probably a female thing as well. Can females tend to be a little more empathetic? I feel at least that’s my experience from the research that I’ve done with all the dumb mates and blokes that I know, but it’s been lovely to chat to you guys. Thank you so much for reaching out and sharing the story. I really appreciate it.

Bill Gasiamis 1:09:50
I wish you well in your health, your recovery and Brittany. I wish you some time so that you can start looking after the things that you need to you. Get back onto looking after so you guys can be healthy and well for your children, because there’s no point everybody. There’s still. One of the things that I try to sort of impart on a family who’s going through this is, you know, sometimes the relatives and the family, they kind of all suffer their own version of deterioration or breakdown after a caregiver.

Bill Gasiamis 1:10:28
Because they’re a caregiver after their loved one has a stroke, we can’t have 356, people in the family sick at the same time. Let’s look after ourselves so that we can be able to be well, to support that person who’s going through that, but also to not make things even more complicated and even harder. As you know, that’s kind of how I see it.

Bill Gasiamis 1:10:53
Caregivers forget to take care of themselves. They put everything that’s about self care on hold, and then they just put it all into other people. And that’s I wish for you. You’re probably already doing it, but I wish for you that you have some time for yourself.

Brittany Karmaou 1:11:10
We’re equal. We kind of, we take care of each other regardless.

Jonathan Karmaou 1:11:16
Yeah, even with my stroke, I’m, I’m always looking after her, making sure she’s okay. Because, you know, I’ve been the sole provider for this family for a long time, and I’ve been the protector the persons there, and even when I was in a wheelchair. I mean, hard to give that up. When you provide them, you take care of your family. I don’t care if I’m in a wheelchair, I’m gonna do something.

Bill Gasiamis 1:11:39
Yeah. I get it. I really appreciate you both. Thank you so much for being on the podcast. Yep, thank you, Bill. That brings us to the end of this episode with Jonathan and Brittany. Jonathan’s journey of recovery after a stroke and Brittany’s unwavering support as his wife and caregiver remind us of the power of resilience, love and determination in the face of life altering challenges. If today’s conversation resonated with you, I’d love to hear from you.

Bill Gasiamis 1:12:12
Please Like, Comment and Subscribe on YouTube, and if you’re listening on Spotify or iTunes, a five star rating or review would mean so much. It helps others discover the podcast and join our supportive community. Remember to check out my book The unexpected way that a stroke became the best thing that happened. Some readers have called it a must read and shared how it has helped them stay positive through their recovery. It’s available on Amazon or at recoveryafterstroke.com/book.

Bill Gasiamis 1:12:53
And if you’d like to support the podcast directly, Visit patreon.com/recoveryafterstroke. Thank you for being here and making this podcast a part of your recovery journey. I’ll see you in the next episode.

Intro 1:13:11
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 1:13:28
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 1:13:53
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.

Intro 1:14:18
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The post From Steroid Abuse to Stroke Survival: Jonathan’s Redemption Story appeared first on Recovery After Stroke.

Introduction

Brooke Parsons is more than a stroke survivor—she is a beacon of hope and resilience for the global stroke survivor community. Experiencing a major stroke at just 13 years old, Brooke’s journey over the past 30+ years has transformed her into an advocate, educator, and leader in stroke recovery. As a Stroke Foundation Ambassador and a lived experience consultant, Brooke has dedicated her life to reshaping stroke rehabilitation and advocating for better outcomes for all survivors.

A Stroke at 13: Brooke’s Life-Changing Experience

At the tender age of 13, Brooke’s life changed in an instant when she suffered a major stroke. The impact was profound—her parents found her unresponsive, unable to walk, talk, or care for herself. Despite the initial misdiagnosis of a migraine, Brooke’s family persisted in seeking answers, eventually leading to a diagnosis of a significant stroke affecting a large portion of her brain.

Her recovery journey was arduous and complex, involving six weeks in a hospital, learning to navigate life with new physical and emotional challenges. Yet, Brooke’s story is not one of defeat but of perseverance and triumph.

Deficits and Strengths: Living with the Effects of Stroke

Brooke lives with long-term deficits, including mobility challenges requiring a wheelchair, occasional speech difficulties, and fatigue. Despite these hurdles, she has embraced her “new Brooke” identity—a version of herself that she describes as fierce, stubborn, and resilient. Brooke’s ability to adapt and find purpose has been instrumental in not only her recovery but in inspiring others.

Advocacy and Leadership: Brooke’s Role in Stroke Research

As a Stroke Foundation Ambassador and a lived experience consultant, Brooke has become a vital voice in the stroke survivor community. She has been involved in numerous groundbreaking research projects, including the AVERT trial, which explored early rehabilitation interventions. Brooke’s input ensures that stroke survivors’ perspectives are considered in the development of treatments, hospital practices, and support systems.

Her advocacy extends to co-designing projects like the Young Stroke Service, which addresses the unique needs of younger stroke survivors, such as returning to work, maintaining social connections, and navigating life milestones after a stroke.

The Importance of Community and Peer Support

Brooke emphasizes the power of community in recovery. By sharing her story and mentoring others, she creates a ripple effect of empowerment among stroke survivors. Whether speaking at conferences, collaborating with researchers, or supporting fellow survivors, Brooke embodies the importance of connection and shared understanding in overcoming life’s challenges.

Philosophy of Resilience: “Drop the T”

One of Brooke’s most inspiring messages to stroke survivors is her philosophy of resilience: “Drop the T.” Instead of saying “I can’t,” Brooke encourages survivors to say “I can.” This mindset shift has empowered her to tackle challenges head-on, whether it’s participating in daring activities like the CN Tower Edge Walk in Toronto or representing stroke survivors on an international stage.

Brooke’s Vision for the Future

Brooke is committed to ensuring that stroke survivors are not just heard but valued in shaping the future of stroke care. She advocates for meaningful involvement of survivors in research, grant applications, and policy-making, emphasizing that lived experience is as crucial as clinical expertise.

A Legacy of Advocacy and Support

As Brooke looks ahead, she remains dedicated to mentoring the next generation of stroke survivors, researchers, and advocates. Her focus on succession planning ensures that her impactful work will continue to benefit the stroke community for years to come.

Conclusion

Brooke Parsons is a shining example of what it means to turn adversity into opportunity. Her journey from a 13-year-old stroke survivor to a global advocate and consultant is a testament to the power of resilience, community, and purpose. Through her work, Brooke is not only shaping the future of stroke recovery but also inspiring countless others to believe that life after stroke can be meaningful, fulfilling, and extraordinary.

Call to Action:

If you’re a stroke survivor or caregiver seeking inspiration, support, or community, follow Brooke Parsons’s journey and learn how you too can turn challenges into opportunities. Connect with the Stroke Foundation or explore the resources available to help you on your path to recovery.

Brooke Parsons: Inspiring Stroke Recovery Through Advocacy and Resilience

Brooke Parsons, a stroke survivor inspires with her journey of recovery and advocacy, showing how resilience can shape life after a stroke.

Highlights:

00:00 Introduction – Brooke Parsons
03:51 Brooke’s Early Life and Stroke Experience
12:11 Impact of Stroke on Brooke’s Life and Family
20:26 Challenges and Adaptations Post-Stroke
29:29 Inspired by Mentorship
38:04 Celebrating Milestones and Navigating Fatigue
47:42 Understanding and Addressing Oversights
57:16 Empowering Stroke Survivors
1:08:47 Shaping the Future
1:18:27 From Survivor to Mentor: Evolving Journey Post-Stroke
1:24:02 Embracing Change: The Transformation After Stroke
1:30:52 From ‘I Can’t’ to ‘I Can
1:34:34 Resilience and Advocacy

Transcript:

Introduction – Brooke Parsons

Bill Gasiamis 0:00
Welcome everyone before we dive into today’s extraordinary conversation, I want to thank you for being part of this incredible community. Your support, whether it’s sharing the podcast, leaving reviews or simply tuning in, makes a huge difference. Together, we’re creating a space where stroke survivors and caregivers feel seen, heard and inspired. Since 2015 I’ve been personally covering all the costs of producing the recovery after stroke podcast to ensure stroke survivors and their loved ones have access to free valuable resources.

Bill Gasiamis 0:37
Last year, I asked for help from those who feel they’ve received tremendous value from the podcast by supporting it on Patreon, at patreon.com/recoveryafterstroke. Your support helps keep this podcast alive, and I’m grateful for everyone who listens and engages and contributes in any way they can, as always, I’d love to remind you about my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is a resource for offering practical guidance and hope for stroke survivors and their families.

Bill Gasiamis 1:16
If you haven’t already, you can grab your copy on Amazon or at recoveryafterstroke.com/book. Now, I’m thrilled to introduce today’s guest, Brooke Parsons. Brooke is a stroke survivor, a Stroke Foundation ambassador and a lived experience consultant who has spent more than three decades advocating for stroke survivors and shaping the future of stroke research, she shares her inspiring story of resilience the challenges of living with deficit, and her work to ensure stroke survivors have a voice in the recovery journey. Let’s jump in.

Bill Gasiamis 1:58
Brooke Parsons, welcome to the podcast.

Brooke Parsons 2:01
Hi Bill. How are you?

Bill Gasiamis 2:04
I’m really well. I am excited to have you on my show. We’ve met a couple of times in person.

Brooke Parsons 2:10
Haven’t we? We’ve been social butterflies.

Bill Gasiamis 2:15
We have, and more so lately than ever, because I have always known about you, but we just never cross crossed paths.

Brooke Parsons 2:25
Is that a good thing that you’ve always known about me?

Bill Gasiamis 2:28
Yeah, because I’ve never heard anything terrible, always nice, lovely things and and it’s all correct. And then when I met you, you know, when they say, don’t meet your heroes and all that kind of stuff, when I met you, I was like, I hope she doesn’t let me down and disappoint me, and you didn’t.

Brooke Parsons 2:47
We were just sitting on the couches having a bit of quiet time, having a bit of a yarn.

Bill Gasiamis 2:53
Yeah, that was at the conference that we were both at Smart Strokes.

Brooke Parsons 3:01
That’s right, it was on the Gold Coast.

Bill Gasiamis 3:03
On the Gold Coast, and I had a little bit of time to do a presentation. I did about a 15 minute presentation, and you did a few presentations, if I remember correctly.

Brooke Parsons 3:13
I did one presentation.

Bill Gasiamis 3:15
One, yeah, what was your presentation?

Brooke Parsons 3:19
On my presentation was about the young stroke service, which is who I’m employed at the Flory Institute. So it’s a project that I’m working on, and I’m one of many. There’s a huge team involved. And I was very fortunate to say that I was going to smart strokes. So I was happy to present on behalf of everyone.

Bill Gasiamis 3:45
Yeah, what is Smart Stroke? What is the Young Stroke Service about?

Brooke Parsons – Early Life and Stroke Experience

Brooke Parsons 3:51
So, the Young Stroke Service is about meeting the needs of people who have strokes when they’re younger. So you would understand yourself bill that your needs and wants when you had your stroke may not have been met immediately, because our needs and wants as young people having strokes are much different to society that are generally met in the hospital when they have strokes. So as a young person, it was about, how do I get back to work? How do I reconnect with my friends and keep those connections going, how do I be a fulfilling auntie?

Brooke Parsons 4:46
How do I do all those things? Get a house or rent or I was very much at the very beginning of my life, and we’ve got an amazing medical system here. But when you’re discharged from hospital, that’s it, right? You’re out in the big, wide world by yourself. And although, over the years, I’ve been very fortunate to meet so so many, who have helped guide me, I’ve learned a massive lot as well. So it’s about addressing the needs and the wants of young stroke survivors in today’s world, we are between Victoria and South Australia at the moment. And it’s currently going well, I think.

Bill Gasiamis 5:46
So you definitely were a young stroke survivor, if I remember correctly. You had your stroke at around 13. So tell me about that part of the process. What happened? What do you remember? How did it evolve? Not evolve? How did you kind of go through those early days of stroke with your family and yourself?

Brooke Parsons 6:14
That’s a really good question, Bill, because I guess you know, I’ve got a lifetime now as a stroke survivor, 31 years, almost 32 years as a stroke survivor. So I’ve lived more than half of my life as a stroke survivor, that as a kid, I was very studious. That probably doesn’t surprise you, but I would always do my school work. I never missed school, I didn’t like missing school. I was always the eighth grade student, and then bang, I had my stroke. I was home alone, talking on the telephone to a friend about going to the local shops the next day to perv on boys, as girls do at 13.

Brooke Parsons 7:05
And my life changed. My parents came home and found me on the ground surrounded by shattered glass, and they had to pick me up off the floor. At the time, my dad was a butcher, so he was used to dead weight, thankfully. He picked me up, I was 50 kilos at the time. He picked me up and he put me on my bed, and from there, my parents decided to take me to the local hospital, where I was given a migraine tablet, and my parents were told to actually take me home, and that if I had a good sleep, I’d be okay, but I couldn’t walk, couldn’t go to the toilet, couldn’t do anything.

Brooke Parsons 8:02
And as a 13 year old, you’re also going through the 13 year old changes, hormonal changes, etc. So my parents stood their ground and said ‘No, we’re not taking her home because she can’t walk, this isn’t our daughter. I could barely string a sentence in any word that I was blubbering out. It was a blubber they weren’t clearly concise words. So I was then taken to a hospital on the outskirts of Melbourne, where I had a CT scan. My parents remained vigil beside my bed for that night, and neurologist came in at round 2am in the morning.

Brooke Parsons 8:54
Said I’d suffered a major stroke affecting a size of a 20 cent piece, my brain being completely dead and surrounding areas damaged, and that if I survived the night, I’d be transferred to the Royal Children’s Hospital. Now that became home to me for six weeks. I was in there as an inpatient. I was then out for weekend leave for a few weeks in a row to make sure mum and dad could cope with me being at home. Because I think it’s important to remember Bill that, yes, my life changed, but so did bears, so did my younger brothers.

Brooke Parsons 9:42
Because, you know, before they went out, the day of my stroke, I was a pain in the bum. I’m not putting any disclaimer on that, because I’m probably still a pain in the bum, but you know, I was this, a grade student that everyone just idolized and looked up to, never did anything wrong. So then to come home in a wheelchair, unable to really talk, while not articulate my words like I used to needing my mum to help feed me, barre me, do everything for me.

Bill Gasiamis 10:30
It was a change of life for all of us. Let me take a quick pause to reflect on Brooke’s incredible journey so far, her story of resilience, advocacy and community building is why I started this podcast to connect, inspire and provide hope for stroke survivors and their families. If this podcast has been a source of value for you, I’d love your support on Patreon, by becoming a patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 11:00
You’ll not only help keep this podcast going, but also join a growing community of people dedicated to recovery growth and making a difference in the stroke survivor space. Now let’s get back to Brooke and hear more about her remarkable journey.

Brooke Parsons 11:18
And then you got another layer on top of that, where you had my school community, so I’d grown up like we generally do with our friends at school, and then one day, I was stuck in a hospital bed, and all my friends at school found out that I was paralyzed, and they didn’t know what was going to happen. And then when I did come back, there was this whole adjustment around, you know, how do we treat her? She’s now got, we were just kids, okay, so she’s got plastic legs on her legs. What do we do? Do we give her extra time? Do we not play with her? Do we invite her out anymore?

Impact of Stroke on Life and Family of

Brooke Parsons

Brooke Parsons 12:11
So there was, I think there’s several levels of complexity to that, but above it all, and this is what I always try to remember to say, this is that I was 13. At 13, you’re still a baby. So in the big world, if your parents say ‘Go and brush your teeth, you go and brush your teeth. You don’t question it. You do it, because that’s what your parents have told you to do. I was very much that person. If I needed to go to the bathroom, I would say ‘Mum, I need your help. I need to go to the bathroom. If I wasn’t feeling well ‘Mum, I don’t feel well.

Brooke Parsons 13:01
If I was at school, it was all about open communication with the teachers on how they could assist me and what they could do to very much make my life regular, to make it normal, because I still wanted to be that BROOKE I was before the stroke, I still wanted to be that Brooke that would get a grades, that Brooke that would be in the music band, the Brooke that everyone loved to hate. Didn’t understand why that had to change, but it did, and I think, if anything, I’ve gone from strength to strength.

Bill Gasiamis 13:49
Now, we’re going to talk about that. I definitely think you have, but you know, navigating that experience at any time in your life’s hard, navigating it as a 13 year old, like it’s even harder. Your the thing about it is, like you mentioned, the thing that really stood out, which is that your life changed, but everyone else’s life changed in your family as well. That is a really important point, because I said, you know, I probably wrote about it in my book as well. I probably said, you know, the day my life changed. And every time I speak to a stroke survivor, it’s always the day my life changed.

Bill Gasiamis 14:36
You know, they it was kind of the line in the sand moment from this before that line, it was like this. After that line, it’s like that. But very few of us, it’s not that we don’t acknowledge the people who have supported us, helped us all that stuff. It’s that they’re not front of mind. They’re not front and center, remote, because we’re going through our own experience, and we’re thinking about like how our life has become harder and more difficult, but our family and our caregivers are going through it with us together, and they have to pause everything.

Bill Gasiamis 15:14
Their identity changes, and their work situation has to change, and their entertainment part of their life has to change, and the way that they occupy themselves and the hobbies they have and the people they hang out with and all that, it is a complete it’s a disruption of everybody’s life, yours, theirs and separately and as individuals, but also as a collective.

Brooke Parsons 15:41
Absolutely and if you think about it, Bill, I just said then about my school friends and my school teachers and the school community. For yourself, it might have been the work community that you belong to, like you may be the stroke survivor, but the effects of your stroke go way beyond you, yeah, and they go way beyond me. And I can even say almost 32 years on that my stroke still affects people today.

Bill Gasiamis 16:16
Yeah, okay, how I get it? But tell me how.

Brooke Parsons 16:21
When I’m fatigued, they may find it harder to understand me because my speech is still troubled at times. We all say we change as people when we have strokes, and I guess I’m a bit of a a tough nut, like, there’s not much that shakes me, but when I’m shaken, I’m shaken to the core. So if I’m having a bad day, and I’ve let things build up and up and up, and then I just sit there and cry, whoever’s around me is affected by that, and that at times, has been work colleagues, unfortunately, and they’ve just had to, you know, go, okay, well, that’s you today, goodbye.

Brooke Parsons 17:14
We’ll try again another day, or, I mean, I was just on the phone to a friend who didn’t wish me a happy birthday three weeks ago, and that was the first time in the entirety of not knowing her that she hasn’t done that she didn’t even register until the last five minutes, and I went ‘Well, look, we can all be a little selfish.

Brooke Parsons 17:44
And I was trying to relay it back to her situation, but I said ‘You didn’t even wish me a happy birthday like and then is that me being selfish because it’s Christmas and we’re all under the pump to get everything done, or was that me being a friend and really just laying it out on the table to a friend who didn’t want to hear it? It’s a little bit. It’s a double edged sword, I think.

Bill Gasiamis 18:17
Are you any different from any other person on the planet, honestly, because I get what you’re saying, because it’s partly your stroke affects you and the other people around you every single day. But quote, unquote, normal people, they and like, have their meltdowns in a different variety or?

Brooke Parsons 18:41
Absolutely, think about it. Everybody has a crappy day at work, everybody has disagreements with friends or family. Everybody in today’s day and age is looking for extensions on bills and all sorts of things. So I am no different. The difference between me and some others is that I carry the burden of the stroke. Yeah, okay, and that is obvious because I’m in a wheelchair.

Bill Gasiamis 19:17
That’s unique, right? In one way, maybe in a community where you hang out and there’s not a lot of survivors, because we both hang out in communities where there aren’t survivors of stroke, and then we hang out in communities where there are tons of them, but when you’re in a community where there’s not a whole bunch of other stroke survivors or people with disabilities or any challenges like that, it’s kind of like of the way I feel it is people who are not directly impacted by a medical situation touch wood.

Bill Gasiamis 19:54
Because they’re healthy and well and nothing’s gone wrong with them. It’s, you know, they’re ignorant, and not willfully ignorant, but they’re ignorant. And then it’s like, how do you know? Is it our job every time to educate people or not? Is it? I don’t think so.

Brooke Parsons 20:13
It shouldn’t be our job. But I’m sure you’ve found over the years, Bill, just as much as I have, that it ends up being our job.

Challenges and Adaptations Post-Stroke For Brooke Parsons

Bill Gasiamis 20:26
Some people deserve it. Some people deserve it in a way where, if you can nicely, kind of bring them back into reality about something, then I think it’s really necessary. Some situations, I’ve found myself being tempted to say something and then about my situation where, because I don’t look like I’ve had a stroke, the assumptions about me are huge, you know, and it’s like, maybe it’s not the right time to tell you in this particular forum what I’m what it’s like to be me, what I’m feeling, what I’m going through.

Bill Gasiamis 21:03
What my left side feels like, and maybe you’re not being mean spirited or anything, and I don’t need to really correct you or pull you up or anything. But then at the right time, it’s just a little bit of information. I feel like it’s better to give people information about me so that they have an awareness, even though they don’t relate and can’t understand but it’s more about supporting them to understand me better.

Bill Gasiamis 21:30
I think it’s like that, that I prefer to do that where I’m supporting you, so that we can interact in a way that’s not hard for both of us and and awkward for you, because I don’t feel awkward or anything, but you might take it like that if I give you a bit of a hard truth that you wouldn’t expect.

Brooke Parsons 21:54
You know, Bill, I think one of the big words you said right at the very beginning of that was “Assumptions”, people make assumptions all the time about everything and anything I’m sure it’s all in our makeup, right in our genetics. I found in the very early days, I would go and speak at Rotary groups, and I would sit in rooms, and I would just tell my story. I was the girl with the damn it doll, the doll that was lifeless limbs, and, you know, the fight that I had on my hands and I would look around the room as I was speaking, and no matter what I thought of my speech.

Brooke Parsons 22:41
There would be these men crying, and I could never understand why, right? Because what happened to me happened to me, not them. But I think what I’ve learnt over the years is that, yes, it’s taken a lot of education on my behalf to give out. But how much better are those people for knowing that education you’ve had a helping hand in that everyone we know has had a helping hand in that which has had a roll on effect, because assumptions can be horrible things.

Brooke Parsons 23:26
Assumptions, you know, I could have made my mind up about you before I’d even met you, you know, but thankfully that one day, I saw you sitting there alone, and I just said ‘Are you okay? And then that sparked a conversation. That’s all it needs.

Bill Gasiamis 23:48
Yeah, I agree. And it’s like, and same here. You know, I had heard about you. I’d seen some of your stuff on socials and what have you. I knew that you were involved with the flurry. I didn’t know what capacity or what you were doing. A friend of mine told me that he met you because he works at the flurry, and he was just, he was there because his role is to scan people’s brains when they come in for diagnosis or for different research projects or whatever. And he’s in the thick of it, with survivors of loss of neurological conditions all the time, and recently for him, just a little while after.

Bill Gasiamis 24:39
He started working at the flurry, and he’s been in hospitals his whole life like he was in a senior position at the Royal Melbourne Hospital in the Radiography department, amongst other hospitals that he’s worked at. And just after he joined the flurry, his daughter. Had a brain hemorrhage, and she was 17, and he was in near my hospital bed, next to my hospital bed when I went through it, you know, in 2012 and he’s the one that guided my recovery via the introduction to the person who would eventually become my brain surgeon, and all those things.

Bill Gasiamis 25:32
Cris was in awe of the role, I suppose that stroke survivors, not Brooke Parsons, yet he wasn’t like that were playing in the bringing light to this condition, awareness to this condition, breaking those assumptions down, and explaining things in a way that non stroke survivors would understand. And he was talking about how you guys met, that you guys spoke your presentation, what the project was about, and even me at that time, previously, when I say previous, me, pre-stroke me, would have made a decision about you, and because I wasn’t In the frame of mind.

Bill Gasiamis 26:21
Because I was actually very similar to what I am now, but I was a little bit kind of like, what’s the word like, front when somebody saw me, I was glass half full kind of guy, but in private, I was glass half empty kind of guy. So I had this kind of Jekyll and Hyde thing that I used to do. I used to present really well in front of people and then make assumption and then and then not do the same thing for myself in the background.

Brooke Parsons 26:52
Yes.

Bill Gasiamis 26:54
So when I met people who, when I spoke with people who had done different things in certain areas of what I where I couldn’t picture myself or hang out.

Bill Gasiamis 27:06
I was threatened to buy them, or I was whatsoever, like I would put them on a pedestal, and then I couldn’t interact with them, because then I would think that they were better than me, and I like so many weird things that came out of these interactions, which were so false, right? And the stroke, what the stroke has taught me, and the podcast has taught me, is that all the things that I tell myself about me and other people are all rubbish. And unless you have the opportunity to sit and speak to somebody and get to know them about what they are like.

Bill Gasiamis 27:41
Imagine being negatively impacted by somebody I haven’t met because they’re talking on a stage about a topic that’s dear and near to them. Because I don’t have the skills to do that yet, and I think that, and I’ve put them on a pedestal, and I think I’m not good enough yet. I mean, seriously, that just bring myself back down to earth, settle down, calm down, take a breath and just go and say hello and meet this person and formulate your own actual thoughts about this person, and from an interaction, not from far you know, this afar thing.

Bill Gasiamis 28:20
Social media, this afar, thing that we do is terrible, and I’ve found that the podcast has helped me just have no thoughts about people, bring them on and then go for it. I don’t know anything about anything, and I’m just going to, we’re going to discover about each other in the moment.

Brooke Parsons 28:42
You know, Bill, I think that. I think people are afraid these days to make friends, and I think that’s exactly what you’re describing there. You know, not making an assumption about anyone being willing to sit down and have a bit of a chat with them, find out what you can and work with what you’ve got, whether that’s becoming great mates or colleagues or, you know, the person you might see once a year or once every few years. It doesn’t matter, but there’s some sort of workable relationship there.

Brooke Parsons – Inspired by Mentorship

Brooke Parsons 29:29
I’ll never forget 21 years ago when Julie Bernhard rang me and introduced who she was, and that’s how I actually got into the flurry and into research. Up until that point, I was just one of these little people that went around and said ‘Hi, I’m Brooke, I had a stroke. I heard Julie B’s voice on the phone, and at the end of it, I just went, yeah, I’m going to give this a go. And I’m going to give this a go because she sounds like she’s a woman who knows what she wants and how to get it. And she was one of those people like I was talking about right at the very beginning.

Brooke Parsons 30:18
Who said to me, who’s your adult neurologist? If you’ve left the children’s now, where are you going? And I went, do I need someone? But it’s people like Julie B and Vincent and people way smarter than I could ever be including your friend, Chris, because I know exactly who you’re talking about, that I admire, that I look up to. I’ve been so fortunate to be guided by I asked for their opinions, and I remain open in in the feedback that I get from their opinions. But as a person, if you ask me to go outside and speak to a stranger, I’d have no idea on how to do that.

Bill Gasiamis 31:16
Yeah, I think where we’re getting at is is that this particular moment in time, with regards to stroke recovery, is bringing stroke survivors into the research field and treating us as equals, that’s where we’re at. We’re starting there equals in that what we’ve got to offer from our perspective, and what the researchers or the doctors have to offer from their perspective are actually both very useful things, and they need to be combined where previously it was, that was the part of my assumption about who these people were and what they did, was that they’re going to tell me what to do.

Bill Gasiamis 32:00
And I’m going to have to go along with it, whether I like it or not, no. And that kind of does, that’s the part that doesn’t work for me. And I always had that while they’re in a white coat, I know what that means for them, you know? Or do you know what I mean? So it was like that kind of assumption that I was making is I thought x of certain people, and then I thought that they had assumptions about me, and it was just too messy in my head and to break down those.

Bill Gasiamis 32:27
Those my ignorance by embedding myself into a podcast and then into the community by meeting tons and tons of stroke survivors, doctors, researchers and all that kind of stuff. What I realized is that I think we’re moving to that phase where there’s equality in what, in how we’re seen by the research and the doctors who work on solutions for stroke survivors, whether they are physical therapy solutions or neurological solutions or emotional issues.

Brooke Parsons 33:06
Med solution, I think that Bill that you know, you talk about, maybe the professors being up here and us down here, that’s it. Anyone years ago, I was very much like that, yeah, so I’d speak if I was spoken to as we’re now, you can’t shut me up, right? Because Julie professor, Julie Bernhard, Julie be to me, yeah, he’s taught me over the years that my voice is actually really powerful, and that if I don’t agree in something that the professors are saying, I need to tell them now. Otherwise it could change research. It could change the way things are done. Guidelines are done, policies are made.

Brooke Parsons 34:03
It could change the way stroke survivors are treated in hospital, and maybe not for the better, but because people like you and I have been through it, we can say, well, actually, that didn’t work. Or have you thought about it from this perspective? And that helps fill the gap that what the researchers don’t see from day to day in a hospital room or in a hospital or even in a home setting that we see because we as stroke survivors don’t get the opportunity to take our stroke off and have a holiday from it. Okay, that’s the sad reality of it.

Brooke Parsons 34:47
It’s with us. 24 hours a day, seven days a week, 356, days a year. For the researchers, they may be researchers 9:00 to 5:00 I know they do accept, allow us, but let’s say 9:00 to 5:00, they get to go home to their families and have a life outside of research. So I think for me, that equality is coming to an equal because if I don’t speak up, or if I don’t speak up, on behalf of those who can no longer speak up. Unfortunately, then our messages and our words are never going to get across.

Bill Gasiamis 35:32
Yeah, nothing will change and and not only the people who can’t speak up, the people who don’t know what to say when they’re faced with the situation, I feel like what we’re doing, you and I right now, is what we’re doing is we’re encouraging all the stroke survivors listening to get involved and to speak up and to be part of research and to be a part of whatever the Medical kind of world needs from stroke survivors.

Bill Gasiamis 36:02
Whether you’re presenting, whether you’re speaking, whether you’re involved in research, what we’re saying, I think, to everybody listening and watching, is we need to get involved. We need to make ourselves heard and our issues known so that people can start knowing that there’s more work to be done.

Brooke Parsons 36:27
There’s more work to be done, but also from a funding perspective, and I don’t mean to bring up dollar value, but at the end of the day, researchers need funding to do research, and often to get funding. Now, more than not, you need to have a consumer involved in your steering committee or on your board of your research, and that needs to be shown in the grant application. And I think if we can get consumers involved even before grants are written. So I know I was consulted about the Young Stroke Service before it was even written up as a grant application.

Brooke Parsons 37:13
And then I was asked to check the grant application before it was submitted. And then I was one of the first handful to find out we were lucky enough to get the grant to run the project at every step of the way I’ve been consulted and that, to me, has been real, true co design that’s being having a consumer involved in every twist and turn of the project. I think, you know, I’ve been around a long time now, sadly.

Bill Gasiamis 37:56
Not sadly.

Brooke Parsons 37:57
I don’t know, the gray hairs is starting to show.

Bill Gasiamis 38:00
I just turned 50. I’m excited about that. Are you serious?

Celebrating Milestones and Navigating Fatigue

Brooke Parsons 38:04
Absolutely, good on you. What a milestone, right? The other week, I turned 45 and it’s like I woke up excited, but then my day just got on with meetings and all the normal things, but then I made a cake. So when I went into work two days later, I had a cake to share with the researchers and the colleagues there, who are my friends, my work buddies, I call them. And you know, that was nice. That’s what I needed, because we can talk about all of this, and I’m very surprised it hasn’t come up yet.

Brooke Parsons 38:52
And I’m not sure how you find it, but I find as the year goes on, full steam, beginning of the year, my puffing Billy ready to go right? And then as the year gets on and on and on and on, I start to slow down because I’m fatigued. So as a stroke survivor who’s been around for a very long time, there’s new stroke survivors coming through the ranks to do what I started 21 years ago, and to do what I’m doing today in different projects, etc. And you’re right, it’s about breaking down those those those equality walls, to realize that it’s you’re just as valuable.

Brooke Parsons 39:47
And your input is just as equally as important as what the researchers who use but at the same time, you need to remember, and when I say you Bill, I mean all stroke survivors and researchers need to remember at times we can all get fatigued, and that when a stroke survivor gets fatigued, it may show in different ways. And then I guess I would be asking that members of the team around that stroke survivor would pick up the slack for that stroke survivor at the time of their fatigue.

Bill Gasiamis 40:23
That’s fair. So are you full time employed in this role?

Brooke Parsons 40:38
No.

Bill Gasiamis 40:39
How many hours a week do you do?

Brooke Parsons 40:42
Too many? I am okay, so I probably do about 5 to 10 on the books, but there’s a lot I do off the books.

Bill Gasiamis 40:58
No doubt, and how many years have you been doing this type of work for, or have you had this role, I suppose.

Speaker 1 41:10
So, with a monetary reward of being paid probably the last two and a half years for that, for 21 years, I’ve always been volunteering of some way, shape or form.

Bill Gasiamis 41:28
Wow, such a long time you would be the most prolific volunteer ever. I mean, you’re I’m saying that now being a little bit funny as well, but realistically, if you think about it, the amount of impact that all your work has had for 21 years, you know, and evolving with somebody who was very young, you know, very, very young when they had a stroke, and then bringing you along for the journey for 21 years mean that you got to influence people and explain to people what it’s like as a 13 year old, as a 23 year old, as a 33 year old, and so I like, Do you know what I mean?

Bill Gasiamis 42:13
And move through the whole life cycle that you’ve had since very young, that’s really going to that’s going to be very insightful, and it’s going to make Wow. It’s going to make what you can offer researchers so much more man rich in information and experience and all that kind of stuff. Does that make sense?

Brooke Parsons 42:41
Like it does make sense, but I think we’ve all got a lifetime that we can explain. So where you were pre-stroke, to what happened with your stroke, to straight after your stroke, to the next little bit, to meeting others who have had strokes and how that’s made you feel, etcetera, will be different to my journey of the last 30 something years.

Bill Gasiamis 43:09
Yeah, but your journey has been, your focus has always been about making and improving the lives of stroke survivors.

Brooke Parsons 43:18
It has, yes.

Bill Gasiamis 43:20
Yeah, and mine, and I’m not saying that it should have been. What I’m saying is your version, only because you had a stroke of 13, no other reason. You know, you’ve put a lot of time and effort into improving the lives of stroke survivors, which includes you, but that’s alright. That’s the whole purpose. You need to be your own advocate, and while you’re advocating for yourself, other people benefit, and that’s awesome.

Brooke Parsons 43:49
I think Bill there that you You’re right, but I think I do what I do not only because I love it, but because, unfortunately, stroke is an illness that we’re not going to be able to stop. We want to be able to stop it, but we can’t. So if I can have an impact on research now, that’s going to help someone who has a stroke in the future, I’ve done my job. That’s what it’s about. It’s not about going our strokes exist, and now they don’t. I want to be able to do that, but we can’t. So if it’s about just making life a little easier for somebody who has had a stroke, then all the better.

Brooke Parsons 44:48
Like, if we think back to the day that you and I met, and you just need a quiet time and poor Bill, you get me come up. Are you okay? You didn’t need to be open to a talk, you didn’t. You could have just said ‘Oh, bugger off. I want some time to be by myself. I would have had to have respected that, but I was concerned, because you were by yourself.

Bill Gasiamis 45:17
And I look really pooped, didn’t know you did.

Brooke Parsons 45:22
Although in Adelaide, I thought you looked more pooper.

Bill Gasiamis 45:26
Yeah, I think you’re right.

Brooke Parsons 45:28
Yes, so when looking back at that first conversation that you and I had, what did you take away from that talk?

Bill Gasiamis 45:40
Look, I just felt like you were, like you knew me more than anyone else, so you tuned in. You exactly knew where I was at. You didn’t even have to actually ask me. You knew and my quiet time was, I think, in that foyer when there was no one in there, it’s really nice and quiet, it’s large, it’s got good light and that and the sensory overload that I was experiencing when I was in the rooms where there was presentations happening and one after the other, after the other. So we’re talking about fluorescent lighting, lots of light coming through the windows as well.

Bill Gasiamis 46:21
Which we were right were right there details on the on the board, on the screen, where the presentations were happening, the sound from the microphone system and the PA system. And it was like, I am just nothing sinking in anyway. So it doesn’t matter who was presenting or what they was saying. I was like ‘I can’t be in here. I’ve gotta be elsewhere. I’ve gotta give my time, my brain, time to settle down, because we’ve got another half a day to get through, and the next day to get through. And I get energized emotionally and mentally being there, but I get drained physically.

Brooke Parsons 47:03
So completely agree.

Bill Gasiamis 47:05
I’ve got to play that game, right? So when you came over and we had that chat, firstly, I wanted to meet you. I was hanging out to meet you because Chris told me about you earlier, and I knew about you from before Chris told me about you. But also I knew you were going to be there and you, you were going to be presenting in some capacity, and that was my goal, was to get there and meet more stroke survivors. So I met you, I met Adrian O’Malley eight. I bumped into booth again, Brenda booth again, and a bunch of other people, right? And I thought, excellent.

Understanding and Addressing Oversights

Bill Gasiamis 47:42
This exactly what I want. And not only do I want to meet people just for the sake of meeting people, but meeting people who get me, who I don’t have to explain stuff to, is just such a like it’s such a relief to just be in a space where people just totally get union have to say anything, and that helps, because when I’m with my family and friends who’ve known me my whole life, and even though they know that I had a stroke or two or three in 2012 to 2014, they still default to my regular how they knew me. How they knew me before stroke, and they treat me like that.

Bill Gasiamis 48:24
And I’ve gotta always kind of massage them into like, I’m having a bad day bill, or I’m not up to this kind of, you know, whatever Bill. And I’ve gotta keep telling them and reminding them, by the way I had a stroke once, you know, and I don’t mean to do it and be nasty anything. I just gotta keep reminding them that I am having one of the things that happens to people without a stroke, and it hasn’t gone away yet, and it’s been 14 years, or 10 years, or whatever. It’s been 12 years.

Bill Gasiamis 48:58
So when I’m in a space where people get me, it’s strange that it happened to be I had to go through stroke for people to really get me, but I love it. I love it even though I’m wrecked, even though I’m tired, even though it’s just, I don’t know, it’s easier, but, and you know where I was disappointed, I’ve got to say, right? So you know, when we went to Adelaide for the Asia Pacific Stroke Conference, we’re in a whole place where everyone is there for stroke. They’ve traveled from all over the world, and talk about not getting us right.

Bill Gasiamis 49:36
There was a lady who did a presentation at the very opening of the event, and she had a stroke, and she had deficits. I’m pretty sure it was left side deficits. She wasn’t able to walk.

Brooke Parsons 49:55
Right.

Bill Gasiamis 49:57
Was it her left?

Brooke Parsons 49:54
Right.

Bill Gasiamis 49:55
Right? She had deficits. She couldn’t walk, she couldn’t move her arm, etc. And she was meant to get on a stage, and they brought and she’s with her caregivers, etc, comes to the stage, to the edge of the stage, and there’s no ramp, I know, push her wheelchair up the stage to get her to the podium where she could stand, and it’s like, are you guys serious?

Bill Gasiamis 50:27
We are at a Stroke Conference. Everyone is talking about how they’re going to help stroke survivors overcome all these things and improve outcomes, and, you know, have better results in hospital and all that kind of stuff. And the one thing where should have not even been a thing.

Brooke Parsons 50:49
That shouldn’t have even been a consideration.

Bill Gasiamis 50:51
Yeah, there should have just been a ramp there, part of the stage, yeah, and there was no, no one there. So I so that gave me that, that view of what it’s still possible, what it’s still like, even in the stroke medical world, and when and I felt like I wasn’t understood in that room, even though it wasn’t me or about me, like I felt you still don’t get me. You guys don’t get me, you spent 30 years doing this stuff, your professors, and nobody thought about a ramp for stroke survivor.

Bill Gasiamis 51:30
What do you mean? Whereas, when I was in the room with at the smart strokes conference, I felt like you guys got me, everyone got me. You know, you definitely did, but just generally, that was a way better, like it was a way better experience, there was ramps everywhere, it was accessible.

Brooke Parsons 51:54
Just interesting. Feel that there was more peer support at Smart Strokes.

Bill Gasiamis 52:01
Yeah, the intimacy of that event may have been what enabled that. So I get it, and there was a lot less international flavor there, so I totally get that, and it was a very well organized event. It was a great event. The presentations were awesome, and so they were at Asia Pacific Stroke Conference. But I just feel like I don’t know if it was the organizers or the people who run the Asia Pacific Stroke Conference, but it’s very telling when the most important thing is overlooked access.

Brooke Parsons 52:45
For a stroke survivor, this brings me to accessibility. We’ve all had accessibility issues in one way, shape or form or another, you bring up a very good point. Was it the organizing committee at Asia Pacific strokes conference that overlooked around to you and I, it’s just natural. It’s what should be there, but did anybody in that organizing committee have had a stroke, none.

Bill Gasiamis 53:29
That says a lot. I agree.

Brooke Parsons 53:31
Therefore, it brings us back to our original point that humans need to be involved in every single aspect, agreed, not just from a uni giving their input, not just from an institution giving their input, not just from an organizing committee, but from every angle, consumers are so needed and wanted.

Bill Gasiamis 54:02
Yep, I totally agree, absolutely. I mean, that’s the only thing that could possibly explain why they missed such an obvious thing. It’s like the elephant in the room. How can you not see it, honestly, but at the same time, maybe that’s there’ll be a learning from that, surely, because I think people would have told them, what are you guys doing? How come you didn’t have a ramp there?

Brooke Parsons 54:25
Did you give feedback?

Bill Gasiamis 54:28
Not about that issue, no.

Brooke Parsons 54:30
Okay.

Bill Gasiamis 54:31
Yeah, but I imagine that others would have surely.

Brooke Parsons 54:36
Yes, I’m hoping so.

Bill Gasiamis 54:41
So that’s interesting. I thought that others would, and I thought maybe I don’t need to, but I feel like now I should have, even though others might have made a point of that, I feel like I should have made a point of that just nicely in an email saying ‘Hey guys.

Brooke Parsons 54:59
Important to us.

Bill Gasiamis 55:01
Yeah.

Brooke Parsons 55:01
It’s important to you, you need to voice it. She could all live by the rulings of, someone else will mention that, or someone else will give feedback. But what if nobody does because someone else is thinking ‘Oh, Bill will give that feedback. Bill will do that. He was really upset about that when I saw him. I’m sure he’ll give that feedback, but you are thinking someone else was going to give that feedback. So no matter how many times these people hear it, they need to hear it.

Bill Gasiamis 55:34
Yeah. I agree. I suppose the more people saying it, the more it’ll sink in absolutely.

Brooke Parsons 55:44
Yeah, we’ve all been in those shoes where we wouldn’t have given ramps a second thought.

Bill Gasiamis 55:50
Oh yeah, I definitely was that quiet.

Brooke Parsons 55:55
Moved into an SDA, a Specialist Disability Accommodation, and yeah, the doorways are wider, and it’s very much catered to my needs. As I think I’ve picked up two things so far in four months that ain’t right with the place. But my point that is, I’ve gone from renting a one bedroom apartment to this 1.5 bedroom SDA apartment, the bathrooms bigger, so I’m able to get my wheelchair in, wheelchair out. I’m able to shower comfortably here, all these things I wouldn’t have thought of just as I didn’t think of when I first wanted to move out of home.

Brooke Parsons 56:46
But until you’re faced with those challenges, you just think ‘Oh, someone else will deal with that, but someone else’s issue that’s not mine. So we’re all my point is we’re all made to be like that, but if we can just remember, have that little voice in our heads going, but my voice is just as important. And if I thought that in the conference, I need to relay that.

Brooke Parsons Empowering Stroke Survivors

Bill Gasiamis 57:16
Yeah, that’s the point of the conference, to bring stroke ideas, information together, right?

Brooke Parsons 57:21
Absolutely, and consumers are more and more playing a role. So a couple of years ago, you would never have seen the the level that we saw at Smart Strokes of consumer involvement.

Bill Gasiamis 57:38
You’re literally talking about a couple of years ago.

Brooke Parsons 57:41
Actually, two years ago, yeah, you might have had one stroke survivor. Might have opened up the conference, and that was about it. Now this year, what did we see?

Bill Gasiamis 57:53
Yeah, they were front and center in every part of the conference, stroke survivors, every part of the conference.

Brooke Parsons 58:00
Absolutely, yep.

Bill Gasiamis 58:03
And Saran opened up quite a number of those main morning presentations. It was great, actually, absolutely,

Brooke Parsons 58:16
So I know last year I gave like, a three page letter feedback of all the things they could have done better for Smart Strokes, most of it was taken on board. This year my pet peeve was about the accommodation, but we won’t even go there. So I haven’t really provided feedback per se, but I am sure if I was that stroke survivor who had to get up on stage, maybe I’d be a little different, because it would have impacted me directly.

Bill Gasiamis 59:04
Yeah, I had to move so Asia Pacific, Stroke Conference. I had to move from the hotel room I was at that was suggested as the place to go for affordable accommodation near the venue where smart, where the Asia Pacific Stroke Conference was, and I think the organizers didn’t actually go and check out the accommodation that they recommended.

Bill Gasiamis 59:35
And let’s just say it was old, which is not relevant at all, because that doesn’t bother me in one bit, if something is old, but it wasn’t clean, and there was a lot of dust and debris in the air vents, and you could see places where furniture had been moved, and there was like a thick layer of dust that had a main vacuum.

Brooke Parsons 59:57
I wonder if we were talking about the same place.

Bill Gasiamis 1:00:01
We may have, we won’t mention the name, and then, as a result, I had to relocate and move because I was so unwell with my sinuses. And I made a note to the organizers and said ‘Hey, guys like you made a suggestion, and it seems like it’s been a while since you’ve gone and inspected that property that you’re suggesting to us to go and see, to go and stay at because the standards are not good enough, these are all the things that I’ve experienced, these are the photos to prove what I’m saying.

Bill Gasiamis 1:00:43
Like the dust was caked onto the air vents, yes, and I’d like to let you know that you need to do more in inspecting a place when you recommend it. So that was received well, and then I changed accommodation. The hotel wasn’t very supportive, but the organizers were a little bit upset, horrified that it would event would have that that thing would have happened. So I suppose, like I spoke out about that, because I know that a lot of other people were may have been impacted by that.

Bill Gasiamis 1:01:24
And it’s just that I’m still defining my role in how, what kind of role I’m playing in the community, in stroke survivors community, very powerful one. Well, I hope so, with the role, as in, like I have been, I have been a little bit not distant, but I have taken purposely a slow approach forward and, you know, stayed in the background because I didn’t know whether it’s an old, this is old Bill again, you know, going, I don’t know if it’s appropriate for me to talk to people like this, who are in these positions, who have these types of qualifications, and, you know, tell them what I think.

Bill Gasiamis 1:02:15
You know. So it was, I’m kind of about getting over that, and I don’t need to tell people what I think from I know everything perspective, it’s just from a you guys are missing the obvious thing, like the ramp at a Stroke Conference. You know, I’m feeling more and more comfortable about being in that position, and I think I owe my listeners and my guests the responsibility of taking what I’m learning from them.

Bill Gasiamis 1:02:44
When they offer me an hour of their time to listen to an episode, I think I owe them a responsibility to sort of take it to the next level and go ‘Hey guys, this is what I’m hearing from 330 stroke survivors that I’ve interviewed. This is what you need to be aware of.

Brooke Parsons 1:03:03
Yes, but I think Bill, you already do an incredible job.

Bill Gasiamis 1:03:10
Yeah?

Brooke Parsons 1:03:10
What you do? So, Bill, can take a hike for a little bit.

Bill Gasiamis 1:03:15
Yeah.

Brooke Parsons 1:03:18
The only bit of advice I would give if I’m allowed to give you advice is, choose what you want to make a difference in. And by that, if you want to talk about ramps and stages and conference centers, you might be thinking more along the architect side of things, accessibility side of things, that if it was a peer support thing, you might go.

Brooke Parsons 1:03:52
I might just put you in contact with Adrian O’Malley and Brenda Booth, or The Flooring Institute, or whoever that would specialize in that, and then you could proactively do the whole conference stage sort of thing. I’m only using that as an example. What I would tell you is that you can’t do it all.

Bill Gasiamis 1:04:18
No, no, none of us can do it all right? That’s very important.

Brooke Parsons 1:04:22
Because if we don’t look after ourselves, we’re unable to look after each other. And at the end of the day, as a peer support group, who do understand each other, we need to be able to look after ourselves.

Bill Gasiamis 1:04:39
I appreciate that. You know why? Because I haven’t actually really thought about what where I want to play most at that’s so that’s a really good point that you made there, and this might encourage me to sort of think about where that might be, whether, like you said, whether it’s accessibility, whether it’s something else. That’s the first time I’ve actually heard it like that. And why? Perhaps I felt like I can’t really comment about all these other things because I haven’t picked it as my hobby horse.

Brooke Parsons 1:05:13
Maybe and look, we’re all here to help and to guide you and to listen and to pose questions that probably mean nothing to you, but to get you thinking about what you would like, where you feel that you can make the biggest difference.

Bill Gasiamis 1:05:38
Yeah, that would be good to know that. Oh, my God, I think about that.

Brooke Parsons 1:05:47
Ring. You can always email.

Bill Gasiamis 1:05:51
Thank you. So what can you talk about some of the work studies, research that you’re involved in currently? Can you give us a bit of a idea?

Brooke Parsons 1:06:03
Absolutely. So obviously, I started out 21 years ago as the consumer representative for the avert trial, which is a very early rehab trial. It was an international trial run out of the flurry under the direction of Professor Julie Bernhard. At the time, she said ‘Can you give me three years of your life? And at the 15 year mark, we presented the results of that trial. So there’s no time frame on research. I think that’s the biggest thing I’ve learned, is that you know, if you’re going to do something, you do it properly. From that, I’m now the consumer consultant for the avert dose trial.

Brooke Parsons 1:06:54
So we’ve learned that you can get a stroke survivor up out of bed, but we’re trying to get the exact dose right, because it wasn’t necessarily correct in a vert. I was also the consumer consultant for pesto, which was a drug inserted into a person’s spine to break the paralysis cycle. I was a part of the novel project. Novel is an architect project, actually, and that had me hook, line and sinker. That was if we had an unlimited budget, how would we build a hospital? What would it look like for stroke survivors?

Brooke Parsons 1:07:48
And I had Rosie from the Jetsons, for those that aren’t too young to remember the Jetsons on TV, and they had Rosie, the robot that would clean up after them, etc. And we would have lighted walls. So if I put into the keypad on a wall that I had to go to physio, the walls would light up all the way to the physio room, etc. So that was really cool, because you could think outside the square as to what you wanted to do.

Brooke Parsons 1:08:23
I’m now involved in the Young Stroke Service, which we briefly touched on at the beginning, and there could be something coming up, but I’m under wraps at the moment someone stay tuned.

Shaping the Future

Bill Gasiamis 1:08:47
Alright, okay. Well, I think I know part of the, some of the stuff that you’re working on not going to mention it. That’s alright, and I understand why you might keep things under wraps, It’s important to do that. So what does it look like for you going forward in the next five years and 10 years in this space, do you still see yourself hanging out, playing, supporting, being involved?

Brooke Parsons 1:09:21
There’ll always be a spot for me. It’ll just be however big or however little I’ll want it to be, the way I’m looking at 2025, it’s going to be a massive year.

Bill Gasiamis 1:09:37
Okay, for research and stroke survivors for what specifically me, for you.

Brooke Parsons 1:09:44
For me in the research world. But let’s keep in mind that whilst I know where I’m heading, personally in the research world, I’m always thinking that, if I wasn’t around, would my role still go on? Who would do my role? Who’s coming up through the ranks? How do I want my role left from me for the next person to take over. So there’s always that going on in the background.

Bill Gasiamis 1:10:31
I like that. I like that you’re thinking about that because then we don’t want any of this to stop.

Brooke Parsons 1:10:40
No, because it’s much bigger than you and I, right? And life is fleeting, that’s the truth of it. So I mean, stroke research was always around before I started, but the consumer voice wasn’t as powerful as it is today, and I’ve had a real helping hand in making it powerful. So what can I do to ensure that that powerful voice of the consumer stays alive well and truly beyond my days when I decide, right, it’s time to retire, I’ve had enough need to go and sit on the Whitsundays.

Bill Gasiamis 1:11:31
Yeah, I like that. You’re thinking of that. What do we call that? Not it’s like, what’s the succession plan?

Brooke Parsons 1:11:42
Absolutely, yeah, we definitely need that everything we do, in research, there needs to be an outcome, but there needs to be a plan beyond that. So if we want consumer voices to be sustainable, beyond me, beyond you, what needs to be put in place for those for that to still happen, and it is happening. It’s happening with grants. Now you can’t get a grant without consumer involvement.

Bill Gasiamis 1:12:27
So, it seems like has there been a policy change or some kind of a change in the way that these organizations do research that kind of embeds that or cements that in? If this doesn’t happen, then nothing happens.

Brooke Parsons 1:12:41
It’s starting to but I still think there’s an element of a way to go. So a researcher may approach someone and say, will you be on our board? And they the stroke survivor can say yes, but then often penciling in the monetary awards of having that stroke survivor on the board is forgotten about. So you’ve got the element of having the stroke survivor committed. Yep, you’ve got them. But then it’s making sure the grant reflects the consumer’s involvement.

Bill Gasiamis 1:13:26
So it’s not just about ticking the box. No, you spoke to a stroke survivor. Technically, they’re on the board, but then that’s about it.

Brooke Parsons 1:13:35
Yeah, because if we think 20 years ago, it was very rarely heard of that a stroke survivor was on a board. Now that’s just expected you have a stroke survivor on your board. Okay, it’s taken us a while to get there, but we’re getting there if it’s written into grants, the monetary reward side of it all, then in the next 10 to 15 years time, that’ll just be ordinary. And therefore, why wouldn’t it be sustainable?

Bill Gasiamis 1:14:20
All the up and coming Brooks will just fall into the program as per normal, as part of the normal running of a grant process of a research program. And then there won’t be that whole like the battle. It’s for lack of a better word, the lack of the like the Battle of the stroke survivors, being heard, being included, being part of the program where that’s just expected. It’s standard every time there’s a grant provided or people asking for money. Your research is happening is just okay, stroke survivor involvement number one starts there and then going forward from everything else.

Bill Gasiamis 1:15:10
That’s such a great way to position research, especially it’s a great thing for other people helping survivors of other conditions to also imagine if we could kind of put that broadly into, you know, cancer. Cancer survivors are involved at day one day dot. Heart patients, they dot this patient, you know, that patient always that they dot, that’d be great.

Brooke Parsons 1:15:43
I think so, and the other thing to remember is that writing a grant or being in research takes a team. There’s no I in team, and that motivates me every day to get up and do what I’m doing, because it really does take a team, a team of exceptional humans, whether they are strict survivors, family carers, researchers and their Families and everyone needs a little bit of someone, and that’s where that peer support and that common understanding comes in.

Bill Gasiamis 1:16:31
Yeah, it’s that party I’ve got a part in my book that’s all about community. It’s like, find your community and get involved so that you can feel understood, heard, that you can feel like I’m playing a role, playing a part. You have purpose, meaning. Tell me a little bit about that for you, like the purpose and the meaning side of it does. Have you ever had that thing in your mind, like, you know, what’s my purpose in life? Have you done that? How have you? Because for me, I had a purposeful and meaningful life before stroke. It was all about my kids.

Bill Gasiamis 1:17:08
It was all about raising them and all that kind of stuff, and then they let you down when they turn 18, because they don’t need you anymore, and that your purpose, you have to redo it, I suppose, revisit it, and work out how you’re going to go forward. And one of the big things in my recovery was when I discovered the purpose was to help other stroke survivors, when I kind of stumbled on that and then I did the podcast and began that, then the meaning came after.

Bill Gasiamis 1:17:43
But at the beginning, the helping came from just attending the Stroke Foundation, Smart Stroke, Safe stroke speakers, course, that I did to learn how to present for them. And then we did a lot of awareness raising campaigns and all that kind of stuff to different community groups, corporations, a whole bunch of places. And it gave me, you kind of turned this horrible thing that happened to me into, man, I could actually turn this into something helpful, meaningful, purposeful and supportive of other people.

From Survivor to Mentor: Evolving Journey Post-Stroke

Bill Gasiamis 1:18:27
That’s not so I’m not going to decrease the amount of time that I’m going to be feeling sorry for myself. You know about what happened to me? Because it’s about other people now, right? Yeah. So what about you? Where are you with that type of thing.

Brooke Parsons 1:18:45
Pre-stroke, I wanted to be a music teacher. So that was pre-stroke. I knew at the age of 13 what I wanted to be when I grew up, and then at the age of 18, when I was looking at uni subjects and uni choices and courses and what I was doing in BCE and where I wanted to go after school, I really had no idea, because I knew I couldn’t become that music teacher I’d so desperately hung on to throughout the first five years post stroke, that was good.

Brooke Parsons 1:19:26
Mind you, hanging on to that idea for five years post stroke, in those very early initial days, gave me a purpose to keep going, to get up, to try again. Get up after every fall, and now I’m going to be okay from that, I would say luck’s been involved, because I was asked by the Children’s Hospital to be a chapter in a novel written by Neil Mitchell. Who was a3 AW radio presenter, and then somebody at the Stroke Foundation read that chapter and said ‘We’ve gotta get her as an ambassador. And then the CEO at the time, Erin Layla, nominated me to be on Julie B’s project.

Brooke Parsons 1:20:22
And so it’s sort of gone around and around in a circle. Now you may have noticed Queensland in Adelaide, I often take a back seat. And by that, I mean I’ll sit there and I’ll be amongst everyone. But if you said to me ‘Oh, Brooke, I don’t agree with that, or I do agree with that, and for these reasons, I’d say ‘Bill, please, say it, they’re really good points, because you’ve told me, right? You might just need that little bit of a push. For me, it’s about mentoring and bringing everyone else up through the ranks. Now, to do what I do.

Bill Gasiamis 1:21:09
I love that. That’s so great. So it’s kind of evolved, and it still involves your original participation, helping other people, be they researchers. As a result of helping researchers, you help stroke survivors, that’s all still there, and now it’s about mentoring other stroke survivors to sort of step in and play a role. I love that.

Brooke Parsons 1:21:30
Yeah, so I think I’ve always been giving. I think there’s always been an element of leadership there. I’m one of these people that always seems to know what’s going on, even when I don’t want to know what’s going on, like around places and things and all of that’s well and good. I’ll always have a little bit of a burning desire in me, I guess, to be a leader in one way, shape or form. And many would probably say I am a leader in what I do.

Bill Gasiamis 1:22:07
Yeah, there’s definitely a leadership quality there that is seems to come natural to you.

Brooke Parsons 1:22:17
I think, yes, yeah. But my purpose isn’t so much about me or doing what I do to fix me, because the cold truth is that’s never going to happen. But a deformed arm, that’s the way that’s going to be, got deformed legs. Sadly, that’s the way they’re going to be. But those that know me, those that have relationships in whatever form, with me, that’s because they know Brooke, the Brooke who lights up her room when she enters.

Brooke Parsons 1:22:58
The Brooke who has a sparkle in her eye every time she smiles, and the Brooke who will give her absolute most even on her worst day, just to get through the day. That’s why I do what I do. I think that’s what gives me purpose, and it keeps me going.

Bill Gasiamis 1:23:28
Yeah, that’s good to have something to keep everybody going. Anybody going? I as we come to the end of the episode and wrap up, I ask stroke survivors these three questions at the end of my episode, which I’ll ask you. But usually the stroke survivors who I ask are very new to stroke. When I’m saying very new. It didn’t happen 30 years ago. It happened say, you know, two months ago, six months ago, a year ago, they’re still in that very early sort of part of their journey.

Embracing Change: The Transformation After Stroke

Bill Gasiamis 1:24:02
And the first question goes, what is the hardest thing about stroke for you? So I’ll be very interested in in that perspective from somebody who’s been living with stroke the majority of her life.

Brooke Parsons 1:24:20
Do the hardest thing for me was accepting the fact I lost old Brooke. However, I gained a Brooke who is fierce, who is stubborn, who can be a loud mouth and still have most of the qualities that she had beforehand. So what I’m describing to you is, I can still be a pain in the bum.

Bill Gasiamis 1:24:48
So, you can be old Brooke. And then there’s this new version as well that’s also still emerged and taken the old Brooke with her.

Brooke Parsons 1:25:05
Absolutely, I think, you know, I could say I’m the old Brooke, but I’d be denying myself the fact that I’m in a chair now, and that I’ve had a stroke and that I’ve got limbs as much as I want them to work, don’t work. So that’s what I mean by old Brooke had limbs. Used to run around on a Saturday morning in a netball skirt and play goal shooter and then come home and study for six hours. New Brooke can’t do that, and that’s okay, but new Brooke is just as powerful as the old Brooke was. She’s just had to find those qualities that make her equally, if not, better.

Bill Gasiamis 1:25:56
More powerful. I love that. So then the next question goes, what has stroke taught you?

Brooke Parsons 1:26:10
What has stroke taught me? That’s a really good question. I this is going to sound weird, but we are all human, so therefore we all have the right to have good days and bad days for people like yourself, Bill and for like myself, despite being in a chair, our stroke is the burden that we carry every single day. So for example, I might say to you ‘Hey, let’s catch up and do lunch. And you’d say ‘Yeah, I’m just going to make a salad sandwich. I don’t know. I’m just making this up, by the way, the way you make a salad sandwich would be completely different to me.

Brooke Parsons 1:27:14
Ringing the support workers downstairs going ‘Hey, can you come up and make Bill and I solid sandwiches. Although it’s done differently because our abilities are different, we’re still people, and we have every right to express how we’re feeling and our opinions and be accepted and loved just as much as the next person. Does that make sense at all?

Bill Gasiamis 1:27:51
It does. Do you feel that society, this is such a general question, and it probably deserves a general answer and nothing specific. But do you feel that society still overlooks the needs of people that are different because of, say, their appearance, their disability? Does that still happen? Do you get a sense that I think overlooked, etc happens.

Brooke Parsons 1:28:24
I don’t know if it’s overlooked. I think we as individuals, though, need to find an acceptance that’s okay for us to go. This was the old me, this is the new me, and I’m still equally as important, and I’m still okay.

Bill Gasiamis 1:28:47
So it’s a personal thing to develop.

Brooke Parsons 1:28:50
I think so because, you know, it would be fair for me to say, people see me in a wheelchair, and they must go ‘Oh, poor bro, she, you know, she’s in a chair, her life must be so terribly hard. But did they see me get up and speak in Queensland? No, have they seen the process of me being in a novel? Absolutely not, but a person who’s been in a novel will completely understand the process of being in a novel. So I just accept how you do things may be different to how I do things. Yes, we’ve both had strokes, but they’re like our invisible friend that just tag along for the journey.

Bill Gasiamis 1:29:46
It’s about how you turn up, isn’t it? It’s about how we turn up to a place, and how we put ourselves out there, and the vibe that we’re giving off, as to how people are going to interact with us and classic example I always go back to this guy is Stephen Hawking, yes, in all of his challenges and disabilities and inabilities and all that stuff, he was still when he turned up, he paid attention. You need to listen to what he had to say about the particular topic that he was talking about. And it did make it made no difference.

Bill Gasiamis 1:30:20
He was the expert in his field, no matter what his condition was like, looked like, you know, nothing. So that’s, I think, where you’re getting it is like, it’s how we turn up, regardless of what we’ve been through or what we’re going through, absolutely. I like it. And then the last question is, and we may have already kind of gone over it a little bit, it’s like, what I don’t like the word advice particularly, but it’s like, what would you tell other stroke survivors?

Brooke Parsons – From ‘I Can’t’ to ‘I Can

Bill Gasiamis 1:30:52
Usually, they’re going through it early on, they just started their journey. Some of them might be, you know, a few years in, they’re still grappling with all of the changes, the differences can What do you tell them? What do you tell other strokes survivors who are listening?

Brooke Parsons 1:31:08
Yeah. Look, I think this is a really powerful question, because if I recall back those early days, and I’m sure we all can, in one way, shape or form, we hear the word can’t a lot. So the first thing I say to stroke survivors is, well, let’s drop the T and it’s I can. And if you can, you will find a way to do it. And an example of that is in 2023 I went to the World Stroke Congress in Toronto, where I spoke, and I said to two of my colleagues who happen to be physios, let’s go and climb the CN Tower, and let’s do the sky edge walk.

Brooke Parsons 1:32:07
Now these two physios clearly thought that I wouldn’t have thought of any dare devil activity, and that would be all safe because Brooke’s mentioned it. So they went ‘Yeah, yeah, no worries. So I paid for the three of us to do it. When we got there, they went ‘Holy Lord whose idea was this again? And I go ‘Oh, very happily. And then we got out onto the sky edge walk, and one of them hung over the edge and went ‘Yeah, I’m free, this is lovely. Another one would barely put a toe over the edge. But then it came to me.

Brooke Parsons 1:32:56
Here I am in the wheelchair, and I’m hanging over the edge, well and truly going, I’m free. This is wonderful. I don’t want to get down from here. That would have been very easy for me to turn around and go, no, I’m not doing that. But I didn’t, because who knows if I’ll get back to Canada. Hopefully I will, but it was something, then that evening, I sent the little clip to Julie B said ‘The only thing missing was you. And then it became the talk of the conference. Everybody knew that there was a girl in a wheelchair who did the CN tower climb.

Bill Gasiamis 1:33:47
Yeah.

Brooke Parsons 1:33:49
And that would be so easy to just sit back and go, I would like to have done that, but I’m in a chair.

Bill Gasiamis 1:33:56
I can’t there’s, I suppose, what you’re getting through is, there has to be, like, a willingness to participate in life. And it’s pretty obvious that when you do like, big things can come of it. I mean, you represented stroke survivors at a conference in Canada from Australia. That’s huge, and that’s possible, right? That’s, I’m not saying that the goal should be to be a stroke survivor who specs on a on a international stage, maybe, but it doesn’t have to be that. But that’s what I get from what you just said.

Resilience and Advocacy

Bill Gasiamis 1:34:00
So by participating in life and doing the scary things, one of them is, you know, looking over the edge of a massive drop, it kind of is a similar thing, to participate and then end up on a stage, which is a big thing in another country, doing a presentation. I see why you’ve achieved so much. It’s because of that willingness to do scare you well, maybe calculated, risky thing, but scary nonetheless.

Brooke Parsons 1:35:06
Yeah, I think it’s about dropping the T and believing you can when you can, believe you can anything is possible, because you’re willing to go to all lengths to make it, in itself is anybody can choose to if they want.

Bill Gasiamis 1:35:31
On that note, thank you so much for joining me on the podcast. I really enjoyed our chat, and it’s great to connect with you again, since we connected in the conferences, which always happens in very small bursts, because everyone’s rushing everywhere, and no one really has time, so much time. So it’s been lovely. Thank you.

Brooke Parsons 1:35:54
Thank you, Bill. Thank you so much, and I’m always around.

Bill Gasiamis 1:35:59
Well, that brings us to the end of this inspiring episode with Brooke from surviving a stroke at just 13 years old to becoming a fierce advocate and lived experience consultant, Brooke’s story is a testament to resilience, advocacy and the power of community. Her work is shaping the future of stroke recovery for survivors everywhere. If today’s conversation resonated with you, I’d love to hear from you. Please like, comment and subscribe on YouTube, if you’re listening on Spotify or iTunes, leaving a five star rating or review would be amazing.

Bill Gasiamis 1:36:38
It helps others discover the podcast and join the growing community. Remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available on Amazon or at recoveryafterstroke.com/book, and if you’d like to support the podcast directly, please visit patreon.com/recoveryafterstoke. Thank you for being here and listening and making this podcast part of your recovery journey. I’ll see you in the next episode.

Intro 1:37:08
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 1:37:38
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Intro 1:38:03
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Intro 1:38:30
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Acceptance: Hemorrhagic Stroke Journey and Path to Recovery

Life often takes unexpected turns, leaving us grappling with challenges we never anticipated. For those who have experienced a hemorrhagic stroke, the journey to recovery can feel overwhelming and uncertain. One of the most crucial yet challenging steps in this journey is acceptance. Acceptance doesn’t mean giving up; it’s about acknowledging where you are, finding peace with what has happened, and embracing the possibilities that lie ahead.

The Reality of a Hemorrhagic Stroke

A hemorrhagic stroke, caused by bleeding in the brain, is a life-altering event that can bring physical, emotional, and psychological hurdles. Survivors often face paralysis, speech difficulties, memory challenges, and other long-term effects. But beyond the physical recovery, there’s a deeper, often less-discussed journey: learning to accept the “new normal” after stroke.

The sudden nature of a stroke can feel like the rug has been pulled out from under you. You might wrestle with questions like, “Why did this happen to me?” or “Will life ever feel normal again?” While these thoughts are natural, the key to moving forward lies in reframing the narrative and shifting focus from what’s lost to what remains.

What Acceptance Truly Means

Acceptance is not about resigning yourself to a life of limitation. Instead, it’s about recognizing the present moment for what it is. It’s about letting go of regrets about the past and instead channeling your energy into what you can control now.

For many stroke survivors, the inability to undo past decisions—such as elective surgeries or lifestyle choices—can weigh heavily. But as difficult as it may seem, accepting that the past cannot be changed is the first step toward reclaiming your power. By focusing on what can be done today, survivors can begin to rebuild their lives.

Steps Toward Acceptance

1. Acknowledge Your Feelings
   It’s okay to feel anger, sadness, or frustration. Give yourself permission to process these emotions, but don’t let them define you. Journaling, therapy, or talking with a trusted friend can help release these feelings.
2. Focus on the Present
   The present is the only moment we truly have. Take small, actionable steps toward recovery, whether that’s attending therapy sessions, practicing mindfulness, or simply celebrating small victories like tying a shoelace or walking a few extra steps.
3. Redefine Your Identity
   A stroke may change what you can do physically, but it doesn’t change who you are at your core. Embrace the parts of yourself that remain strong and resilient, and allow this new chapter to help you grow.
4. Seek Support
   Connecting with others who understand your journey can be incredibly empowering. Whether it’s joining a support group, working with a recovery coach, or engaging with online communities, surrounding yourself with people who “get it” can make the road feel less lonely.

Finding Strength in the Journey

Every stroke survivor’s journey is unique, but one common thread is the incredible strength it takes to move forward. Acceptance doesn’t happen overnight; it’s a process that unfolds gradually. The key is to take it one day at a time, focusing on progress over perfection.

As Mike Kent, a hemorrhagic stroke survivor, shared in a recent episode of the Recovery After Stroke Podcast:

“I’ve learned to realize you don’t need to answer the question of ‘why.’ You just need to move on from it, resource yourself, and bounce forward.”

Motivational Takeaway

While the past cannot be changed, the future is still unwritten. Accepting your circumstances is not the end—it’s the beginning of a new chapter. It’s an opportunity to find strength you didn’t know you had, to rebuild, and to inspire others through your courage.

If you’re on this journey or supporting someone who is, remember that every small step forward counts. Your story is a testament to resilience and the power of the human spirit.

Resources for Your Recovery

• Explore my book: The Unexpected Way That a Stroke Became the Best Thing That Happened, available on Amazon or directly from recoveryafterstroke.com/book.
• Join the community: Connect with others and access resources by supporting the podcast on Patreon.

Acceptance is a journey, but it’s also a destination where hope, growth, and possibility await. Keep moving forward—you are not alone.

Acceptance: Mike Kent’s Hemorrhagic Stroke Journey and Path to Recovery

You can’t change the past, but Mike Kent’s hemorrhagic stroke recovery shows how to embrace growth and resilience to transform the future.

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Empowering Disability

Highlights:

00:00 Mike Kent’s Introduction and Initial Injury
03:59 Waking Up and Realizing the Impact
11:53 Dealing With Acceptance
18:17 The Beauty Of Enlightenment
28:17 Accepting Love In The Form Of Help
38:40 The Path Towards Post-Traumatic Growth
40:17 What Is Post-Traumatic Growth?
53:33 Being Your Own Critic
1:00:16 Becoming A Recovery Coach
1:06:02 The Hardest Thing About The Stroke
1:09:47 What I’ve Learnt From The Stroke
1:12:09 Advice From A Stroke Survivor

Transcript:

Mike Kent’s Introduction and Initial Injury

Bill Gasiamis 0:00
Hello everyone. Today we have an incredible guest, Mike Kent joining us, whose story is nothing short of remarkable. He went from experiencing a life-altering hemorrhagic stroke caused by a routine medical procedure to transforming his life and becoming a source of inspiration for others. His journey is a testament to resilience, the power of acceptance and the incredible strength of the human spirit. You won’t want to miss the lessons Mike shares about embracing the present moment and turning adversity into a platform for growth.

Bill Gasiamis 0:39
Before we dive in. I want to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It is available on Amazon or directly from my website, at recoveryafterstroke.com/book, if you’re looking for practical tips and inspirational stories to guide your recovery or support a loved one, this book is for you. Now, let’s jump into this incredible conversation with Mike Kent.

Bill Gasiamis 1:10
Mike Kent, welcome to the podcast.

Mike Kent 1:14
Thank you, Bill. Lovely to be here. Thank you very much.

Bill Gasiamis 1:17
Tell me a little bit about what happened to you.

Mike Kent 1:18
Well, what happened to me? Well, let’s go back five years to May or maybe April 2019 and I was coming back from Boston, I just managed to land my dream job working in customer success, which is a kind of a new field for technology companies. And I was coming back from interviews, and had successfully finished the interviews there and got off of the job, came back for a routine operation in France, which is where I live. And there I went into the hospital, and the number two neurosurgeon in France, as is the norm, gave the task to a stage which is a trainee.

Mike Kent 2:19
And that’s totally normal, and the trainee like they’re looking for cartilage to put in my nose, just at the top of thing. And it was a cosmetic operation. It wasn’t even necessary, and they drilled into put me in under, into sleep mode, and drilled into my head, got the cartilage and came out and sold it all up, unbeknownst to everyone, that trainee had actually drilled too far and had drilled into my brain and had caused a hemorrhagic bleed that no one was aware of in my head. And so I went into the what they call is the wake up room after the post operation, and I didn’t wake up.

Mike Kent 3:09
I just carried on sleeping, and the night duty doctor then decided to think it’s very odd that Mr. Kent’s not awake. He should be awake now, at least, should be moving, and he’s not moving at all. And so they put me into an artificial coma, and it checked into with a scan what was happening in my head, and they realized that I was bleeding, bleeding into my through my brain, and I had one and a half hours to go so that sorry, I just, it’s quite emotional to recount that kind of story. I didn’t realize that, and, yeah, it’s like I was one and a half hours from touching the other side.

Waking Up and Realizing the Impact

Mike Kent 3:59
So that doctor was absolute is worth his weight in gold, because he immediately put me into that artificial coma. And when you’re in an artificial coma I’m told you’re not, kind of like, forced to wake up. You wake up when you can, which normally is like a few hours or one or two, three days later. I woke up eight weeks later. And when I woke up, I was looking around, and I saw very blurred, I remember seeing my twin brother, and I kinda said ‘What’s my twin brother doing in France? You know, he shouldn’t be. He lives in LA.

Mike Kent 4:42
And what’s my mother doing here? She lives in England, you know. So it’s all bizarre. So then I just rolled over, and I fell out of the bed because I couldn’t move the whole of my right side. And it was then that I realized that, the whole of my right side was hemiplegic, which is, it’s a stroke, it’s just able to move the right side. And I started bursting into tears. It’s a hugely emotive and soul destroying and then gradually, kind of, like, dawned on me that I had come from landing my dream job, like, literally two hours ago, right in my time, right, and now I was in a hospital.

Mike Kent 5:38
And I couldn’t get up off the floor. So what the hell is going on here? And I’m a marketeer, I’m somebody who has always been interested in making the best possible thing that I can for whatever product is, whatever product that I’m marketing, right, whether it’s drinks or whether it’s liquid soap or whatever. So we’re always aiming for perfection, we’re always aiming for that golden nugget, and we didn’t to be actually sitting or lying on the floor and crying and not understanding what the hell is going on.

Mike Kent 6:26
Is my whole world is just collapsing right in front of me, and from then, I got lifted up by the nurses on top. I won’t go into all that, but the rest of that story is that I actually was so depressed that I went into a depression, and I even tried to end my life. But the one thing that saved me was that I want to know what it would be like when I was not here, and I would never know if I was not here.

Mike Kent 7:03
So that was, I was kind of like going at it round of my head ‘Well, Mike, you do this, you know. So I decided not to go ahead with it. I got given a book called The Awakening by Jeff Thomas, and that was from my brother. And that’s where it all just started to resonate with me in that I live now in the present moment. Everything I do is in the present moment and that is what saved me, really, and that’s where I am now.

Bill Gasiamis 7:38
It’s quite a contrast, one minute you’re fully involved in your life and going about business, dream job, all of that kind of stuff. Next minute you wake up and you’re gone, everything that you thought was the way that things were is not like that anymore. And now people people struggle to, you know, kind of have this idea of old age for some people. And it’s just some people describe as like a steady decline, and then over a long period of time, and then you get to 80 or 90, and, you know, some people are fitting well and a little bit less capable, perhaps.

Bill Gasiamis 8:25
And you know that coordination has gone a little bit or things are different, they’ve changed, but there’s this time difference that you’ve had to be able to grapple with the slow change and the things that you don’t do anymore. You can’t do anymore have type been removed from your abilities, right? So you kind of have this big adjustment period and that you can have your conversations with people about it, you can joke about it.

Bill Gasiamis 8:56
Can laugh but it can get annoyed about it, you can get counseling for it. You can do all these things, then a stroke is not like that. It doesn’t give you the time to deal with anything that it leaves you with when you wake up. And it’s impossible for anyone to be able to just grapple with that immediately and be okay with it.

Mike Kent 9:20
Yep, absolutely. The difference, the thing is that a stroke it’s not something it’s not in a moment. A stroke is, It’s a journey. It’s a long road of whatever you want to make it right, and it’s how you actually deal with the hardship, trauma, the difficulty, whatever word you would like to use, it is really up to you and your ability to actually you. We only have one life, whatever you want to believe that we are conscious of one life. So I want to make the best. I’ve always have wanted to make the best of my life.

Mike Kent 10:11
And I think being a twin and 20 minutes makes a hell of a difference for me. I’m the older one, but we are naturally competitive, right, but not competitive, as in, you know, really fighting and stuff. We’re just really driven, and so when you’re presented with a situation that you cannot understand and you cannot even begin to fathom or realize what on earth is going on.

Mike Kent 10:42
You ask yourself questions over and over again, and there’ll come a time when you actually want to get those answers, and you’ll start making an answer because you are just continuing saying ‘I don’t accept this, I don’t accept what I am, this is not fair, okay, I am not a victim.

Bill Gasiamis 11:01
Just jumping in with a quick message. I hope you’re enjoying this conversation with Mike Kent as much as I am. If this podcast has been helpful to your recovery journey, I’d like to invite you to support the show on Patreon. Since the very beginning, I’ve been covering all the costs of producing this podcast myself and your support can help me continue to bring these valuable stories and resources to you and others in the stroke recovery community.

Bill Gasiamis 11:31
By becoming a Patreon supporter, you’ll be joining a community that’s passionate about stroke recovery and helping others feel less alone. Visit patreon.com/recoveryafterstroke to learn more. Every bit counts, and your support makes a real difference. Now let’s get back to Mike’s inspiring story.

Dealing With Acceptance

Mike Kent 11:53
I am Mike, right. I am unique, we are all unique. We’re given whatever cards we’re given and dealt with, and we deal with them as best as we possibly can, these cards I’ve been dealt. I have to accept that I am like this, I am this way, but I don’t want to be a victim. I will do something about it, and so I always say to people that I actually want to concentrate on is what I have and not what I don’t have, yeah, and that’s what has been, has inspired me all along. And I’ve got this kind of get up and go attitude.

Mike Kent 12:35
I think that I’ve always seen the glasses half full, and kind of been a positive kind of guy. Luckily, I think that, you know, the US has ordained all this for me, and that there is a reason why all of this happened, and I’m now actually a recovery coach to people who are in difficulties, whether they are differently abled different, or whether they are disabled, or whether even when they are able bodied, but they are suffering from depression or suffering from whatever disorder or illness that they have.

Mike Kent 13:19
I’m just so I’ve got so much confidence right to share and give and help people, that it’s a super wonderful journey that I’m on now, and that’s okay. It wasn’t okay five years ago, but it’s okay, because I’m meeting people that I’ve I would never have met in my life before, and, yeah, I’d actually even think that they’re on a different side of the street. I would actually walk on a different path to these people. Does that make sense?

Bill Gasiamis 13:59
Well, you were an asshole. Were you?

Mike Kent 14:01
Completely, completely, yeah. And I don’t know why I might say that, because it’s just a different lifestyle. I was arrogant. I was cocky and stuff, you know, now I’m just humble and just want to serve and just want to get I don’t give back because I don’t like the idea of back, that means going backwards. I don’t want to go backwards, I go forward, so I bounce forward and just doing it, do as whatever I can, as well as I can.

Bill Gasiamis 14:32
I love your truth, the truth. And I suppose we’re not all we, perhaps we act like ourselves, but we’re not all assholes. Deep down. It’s just that this circumstances make you kind of steer away from your true essence, and then something has to happen so that you can come back to your true essence. That’s how I feel, because I was not the coolest guy.

Mike Kent 15:01
Were you an asshole then?

Bill Gasiamis 15:02
I was, a little bit. Earlier on in my life, I was terrible at school, I was a pain in the ass to everybody. And then later on, I kind of took that into my adult life, and one on one, we’d have a good time. We’d get along, you know, but I used to have it. I used to, like, if somebody, I thought, if I felt somebody wronged me, that person just never heard the end of it. They were just, it was a vendetta that I had to make sure that I sit, I saw out to the end. And it wasn’t, you know, it wasn’t stalking or illegal stuff.

Bill Gasiamis 15:45
It was just I would be rude and I would be blunt and I’d be short, and I wouldn’t give all the time a day I’m obnoxious, and I would just make their life difficult because I thought that they deserved it, which is actually completely, totally wrong, because I never spent one moment going. I wonder what’s happening in that person’s life today, for that person to behave the way that they did to me that I don’t know that I should give them a break about, and that was my turning point, right? And I share this story a lot.

Bill Gasiamis 16:19
When I saw people in a wheelchair, I just imagined they were sitting down. As bizarre as that sounds, I never connected it to trauma, illness, injury, any of that stuff. And then when I spent like, four or five weeks in a wheelchair because I couldn’t walk, I’m like ‘What an idiot you are, how could you have thought that this is an easy gig? Just sitting in a chair, pushing yourself around is an easy gig. Oh, my God, I’m dealing with all this stuff I can’t walk and all this stuff that the emotional storm, and it’s like ‘Well, you needed to be like this Bill.

Bill Gasiamis 16:59
So that you can become a more compassionate person because you acted compassionately, or you pretended you were you, you were compassionate, but you never acted compassionately when it mattered.

Mike Kent 17:14
I remember going to the rehab place, and I was in an ambulance, and there were these three guys who were all in wheelchairs just outside the front door, all smoking away. And I come in on a stretch, and I’m going, like, the first of all, I’m going, Why the hell are they smoking? But God’s sake, don’t smoke. You’re in a hospital thing, and you’re ruining your health, you’re doing all this stuff, it’s like God’s sake.

Mike Kent 17:47
And remember that even to this day. And that was their release. That was their only way that they could actually get to be with themselves without the have the trauma of the of realizing they actually were handicapped or disabled or in a difficult situation.

Bill Gasiamis 18:12
And they were doing that the day before they were in hospital, as if they’re going to stop today.

The Beauty Of Enlightenment

Mike Kent 18:17
Exactly, yeah. And you never think about that, you never think, you know, I think about my story when I was, you know, from Boston to the hospital, etc, you know, I never think about before. Anyway, what was that guy doing in the wheelchair the day before, right? He got in a wheelchair. What was his life like? Never occurred to me, just like you never, but I don’t think it does to many people actually. I think the the beauty of all this, is that our ability to actually reflect and take that on board makes us a bigger, better, stronger person.

Mike Kent 18:58
Right to be able to serve, to be able to to help others and and spread the word the people that where I live in Paris, has been recently the Olympics. And I went to see the Paralympics, and I went, I was in the swimming arena, and that was when the Brazilian guy who has no arms and very short legs. So basically quadriplegic and has nothing there. He won the gold medal. He beat a guy who had two arms and two legs into silver. I mean, it’s nuts, right? And he swims like it. And then turns on his back, and it’s like, it’s incredible.

Mike Kent 19:46
And then when he gets out of the pool, he is turning around and he’s clapping the eighth person, the eighth where he’s not clapping, but he’s going like this. He’s clapping the eighth person, encouraging, because they are all there to not to show off or to show how good they are, whatever. They’re just participants, that’s it. It’s incredible, and then the way, and they all go round and parading their medals, and it’s that three medalists all together. It’s not one, and then the next one, and then the next one, it’s a huge difference compared to the actual Olympics.

Mike Kent 19:49
Which is the epitome of individual pursuit. And then exactly the whole psychology is to outwit, outperform your competitor.

Mike Kent 20:44
Yes, yeah. And there it was and then the other. The other thing I noticed was that the crowd were so in tune with the athletes or with the swimmers, that there was such unity between the crowd and the and the swimmers and harmony. And that was just it, since she was just thinking about it, the beauty of it all, you know, and it makes it made a very, very incredible experience. And as really, it’s profoundly, taken me and helped me on my journey.

Bill Gasiamis 21:27
Yeah, sometimes you go to a marathon. And let me just qualify this, when I say, go to a marathon, you turn up, you don’t race, because I don’t do marathons. And I never, I never, would. And then there’s, you know, there’s the event which everyone starts off in, and then there’s the event that other people do five kilometers or 10 kilometers, and they might have a physical disability or a mental impairment or whatever, no matter what. And then you just, and then it’s just like the marathons, it’s not even about the marathon.

Bill Gasiamis 21:33
It’s about actually doing all the things that you had to do to get to the marathon.

Mike Kent 22:07
Yeah, exactly.

Bill Gasiamis 22:08
Overcome the injury, get out of hospital, rehabilitate yourself, perhaps train, learn to walk. You know, whatever it is, it’s all about that stuff. The marathon is just like, I feel like it’s just the icing on the cake. A friend of mine, friend of mine who’s able bodied, ran 100 kilometers about three weeks ago, two weeks ago, I was there with him. I was supporting him at every checkpoint, food, clothes, whatever he needed, a little bit of chat, little bit of motivation.

Bill Gasiamis 22:44
And we spoke about it yesterday, nearly two weeks later, and he just hasn’t, still been able to grasp the enormity of what he did. He hasn’t been able to comprehend it and for him, he’s able bodied, but the fact that he did 100 kilometers in 16 hours is still something that he had to find, you know, reach into places he’s never reached before, to be able to actually get over the line and do it. And I think he hasn’t been able to get his head around that it actually wasn’t the run, it was all the stuff that he’s done before the run in his 49 years, to get to the starting line and go.

Bill Gasiamis 23:33
I’m going and then to go, I’m going to go to the end. It’s a big achievement, but what got him there is the even bigger achievement in my mind, because I can’t even contemplate being at the start line of one of those events that I’m running. Yeah, I’ve got to get I’m not even there. I haven’t even done that journey yet, and I’m never going to do it. I’m not going to run 100 kilometers, because I don’t think I’ve got what it takes to do the work that gets you to the start line, because there’s a lot of work.

Bill Gasiamis 24:07
He trained for months and months and months. And it’s like, that’s kind of how I see this whole these guys that get to the Paralympics or become gold medalists in a para-sport or whatever. And it’s like ‘Man, forget the knighthood, so to speak, the knighting. It’s everything else that we don’t see, that’s the amazing part.

Mike Kent 24:32
They interviewed one of the swimmers, because every night on French TV they brought in the the medalists and the people of the day, and it was so well done. And these people just were so proud of what they would what they’d achieved. And you get them and said ‘Okay, so that’s your that’s the highlight of your career, right? So, what to get there, you know, what other major highlights Have you had? And the guy says ‘Well, actually, you know, to get here was, there’s a lot of ups and downs actually.

Mike Kent 25:11
Well, mostly downs actually, in actual fact, it was all downs, you know, we, we don’t see any of that we don’t see that, that had to get up at four o’clock in the morning and goes do it every single day, and on top of that, they are bringing all of their baggage, should we say, of who they are and their disability with them, and then fighting that, and then on top of that, fighting to try and just get to a race and or to a performance level that they’re being been asked to get to, and that’s not even getting into the Olympics, that’s just qualifying for them.

Mike Kent 25:57
You know, it’s fundamental. It really and that’s, I think the people that I have met, and you probably met a lot more than I have, but there’s a lot of guts and driven and determination and grit In disability, and frankly, there’s a lot of positivity. A lot of people who have gone not just the extra mile, but the extra life, sort of 10 miles or whatever, and really, really just going for it. And when they look back, they realize what they have actually achieved is phenomenal.

Bill Gasiamis 26:39
Yeah, and that’s what I want to really emphasize here. The key point is that we’re talking about people reaching the Olympics, competing a massive achievement, winning massive achievement. But somebody else’s Olympics might be going back to work. Yes, and that’s the thing, right? It might be driving, it might be becoming going home, getting a job, exactly, yeah, just going home. It could be anything like that.

Bill Gasiamis 27:08
So what I’m trying to say is, like, Mike and I, we see you, we don’t expect you to be gold medalists or run 100 kilometers or go to an Olympics. What we’re talking about is what’s possible. But also, you know, somebody else’s Olympics might not look like attending France.

Mike Kent 27:28
Yeah and they’re all there. All their Olympics are their own personal journeys and their own personal endeavors within their own way of living, and that’s absolutely brilliant in itself, inspiring in itself. Totally get that.

Bill Gasiamis 27:50
I see a lot of people get a lot of satisfaction, and have been able to tie their shoelaces again, even with one arm, learning how to do that. Or I see a lot of people getting, you know, really moved by being able to comb the hair of their daughter, you know, stuff like that. That journey to be able to get there, to do that might have taken them years. And it’s like, never give up. Keep going.

Acceptance Of Love In The Form Of Help

Mike Kent 28:17
It’s a very interesting point that because my son and my daughter, have accepted how I am because I’m stubborn, so I like to do things myself only because I don’t want to have handouts kind of thing, right? But I’ve learned to actually accept help now, and that it’s important to match. And people, it’s not that they’re not doing it because they are what, because they are sorry for you. They’re doing it out of love, right? They want to help you, right? And that’s a big mindset change that I had to go through.

Mike Kent 28:17
And now, you know, you talk about the tying of the shoelaces. Yeah, I can’t tie my shoelaces, and so I get my son to tie them, and then I just slip the shoes. I just slip on and off, you know, each time. And that’s okay, that’s we call it a win, win. He doesn’t get to do it. He doesn’t need to do it all the time. I don’t need to do it all the time, but he’s done it. He’s helped me with what tiny shoelace, but I’m doing it every day because I can slip the shoes on and off. But it’s little things, and it is always little things.

Bill Gasiamis 29:36
That’s right, it’s a compromise that you had to make, that you had to be okay with receiving help, which is a massive journey in itself.

Mike Kent 29:46
Yes.

Bill Gasiamis 29:47
How could that be a thing that we can’t do? How can that even be a thing that we can’t accept? I don’t get that at all. It’s so weird.

Mike Kent 29:57
I wonder why it. Cultural or what it is, but for me, I have completely changed. I really, really have completely changed maybe that I’m a much better person for it, but that still doesn’t take away that the the first three years, I was stubborn, but now I think maybe it’s age, maybe it’s just I’m loving the world now in a different way, and loving the world. You know, I actually walk a little bit slower to get to wherever I want to get to, but I get to see the world, I get to see the leaves.

Mike Kent 30:45
I get to see the leaves and the color we’re in autumn or fall, and we get to see the different colors of the leaves. And I get to actually experience that because I’m walking slower, and therefore I’m not rushing to the next place. And then you start realizing ‘Okay, I love what I’m seeing, this is really good. So therefore I’m just walking around with a smile. You know, they call me Mr. Bonjour, which is Mr. Hello. I just keep saying hello to everyone.

Mike Kent 31:12
But that’s because I give everyone the time of day. And so if my son comes to me and says ‘Papa, you need to do your shoelace up. Okay, can you help me please, you know? Because it’s all part of the spirit of just enjoying the moment that that I’m in, which is the life I’m in.

Bill Gasiamis 31:32
Yeah, I find, I do that does make sense. A lot of people would resonate with that. I find the similar things where I could go, you know, and just spend time now, having been to Paris and and understanding of the cafe culture there, and what you do when you go to a cafe, you just sit and you just observe and you watch them. I bring that, I go there, and I bring that back to Australia and Melbourne, where I go. And there’s a beautiful place that I love in in our central business district, our city, and I’ll just sit there for sometimes three, four hours with my wife, other times on my own.

Bill Gasiamis 32:07
And I’ll just do that, I’ll just observe people, and then people will come and they’ll do their thing. And often people who are looking for some spare change, or for whatever is, will come up, and they’re really interesting conversations, which I never had before with people like that. And it’s like they’re going to get a few coins, because I always go into the central businesses with coins in my pocket, whatever’s lying around the house, just so that I can have something to hand out when they approach. And sometimes there’s a big bunch of them, sometimes there’s a small amount.

Bill Gasiamis 32:40
And these guys are struggling even more to get a little bit of money these days, because everyone taps their cards or their phone to pay for things, so they don’t carry as much cash as they used to. So we have converse, I have conversations with these people that I never would have had before that are just enlightening, and forget about the drama and the trauma that’s got them on the street, that’s making them ask for money like you have a conversation with somebody, you just get a completely different perspective and you get the sense of positivity.

Bill Gasiamis 33:19
And even in that person’s situation, they still are looking to connect with people, to say thank you, to say ‘Yep, all I’ve got to do is get another 10, 15, $20 and I’ll be able to get a room tonight. And there, they have a goal, they have an outcome. They have something they need to achieve., they’re grateful when they achieve it. They share the same experiences and feelings as us. And there were people that I would have just walked past before. Sure, in a lot of European cities, and even in Australia, there are people who are scamming the system and are doing that.

Bill Gasiamis 33:57
Because they know that people will give, and then that they get to take people’s money, and they’re not in that situation, but some people just are in that situation, you can tell, right? And that’s the thing for me, being able to just sit still in one place and just have observed people, and have people come to me and people walk past me, is it just a completely different thing that I never did before. It’s kind of under the banner of people watching, but it’s more. There’s more depth to it than just people watching.

Mike Kent 34:31
Yeah, I can agree more, and I take that one step further. It’s like I go swimming every day, and on Tuesdays, there is the disabled people come and swim. And we can only swim from 12 to 2pm, adults, right? And then the disabled people are there from 12:30 to 1:30 and only on in one lane. And I just happen to be in that lane, yeah. And I’m swimming with like, you know, one arm and one half leg, something and, I can swim quite, I can do a kilometer quite easily.

Mike Kent 34:57
And then they are all these disabled people there, and I’m encouraging them when I’m there on the end, come on, you go. Got like five strokes to go. You know, one and don’t give up. Don’t go up and like and the smiles of joy and happiness. These guys are actual these men and women are actually experiencing that somebody else is actually encouraging them, other than the meta Nagel, which is the the life card person from the top.

Mike Kent 35:44
Who’s actually in the pool and there, and he’s got a problem as well, but we don’t know what it is, but he’s got nice smile, and he just helping and encouraging us is it’s a wonderful kind of unity and ambience and atmosphere to be in.

Bill Gasiamis 36:03
Such difference in life, such a small thing, massive positive things.

Mike Kent 36:08
And I happened, and I’m going to meet them on next Monday, actually, in talk with a guy. And, you know, little things happen after them, and just be an inspiration, talk to them, and, you know, hang with them and I think that’s so rewarding, and that’s certainly something I would never do before the accident, but now there’s so much pleasure to be got from seeing their smiles.

Mike Kent 36:36
And I would say it’s smiling from the inside out, yeah, where they can actually just resonate with you and have that kind of like sunshine that’s just emanating out of them, just by being with you or hearing you, and just them actually understanding that somebody else is in a similar situation and gets it, and that’s so important.

Bill Gasiamis 37:08
Isn’t it ridiculous how much life we were missing before?

Mike Kent 37:12
Unbelievable, unbelievable, unbelievable. I am here for a reason, I didn’t go to the side because it wasn’t my time. And all of what has happened to me has happened to me for a reason, and so that I can now, I’ve found my passion now and that’s great, but I had to go through all of this to get there, and that’s still hard to stomach. I still hard to to swallow, to be honest. But because I live in the present moment, because of the the accident, and my memory is not quite as good as it was, I’m almost like stuck in Groundhog Day, right? Every day.

Mike Kent 38:06
But that’s okay, because that means I’m just living so much in the present. I can’t change the past is what it is, and the future is going to be based on what I’m going to be doing now. And that’s okay with me, and if I need to know it, I will. I’m serendipity happens to me quite a lot, and so I work out where I need to be and what I need to do, just because that’s what happens and that’s that’s okay.

The Path Towards Acceptance And Post-Traumatic Growth

Bill Gasiamis 38:40
It was traumatic what you went through? Yeah? I mean, definitely traumatic. and see, you’re describing the steps towards post traumatic growth like it’s this concept completely people talk about that was given a term or was given the name post traumatic growth in the late 90s by two researchers. I forget their first names, but Tedeschi and Calhoun, they’re American researchers, and probably not American surnames, but they lived and grew in America, and they came up with the steps, and I was experiencing post traumatic growth through my journey.

Bill Gasiamis 39:22
You know, I’m 12 years out now, but through my journey, and not having a word for it, a label for I couldn’t describe to people all the things that we’re discussing now that I had done, achieved, learnt as a result of this stroke, the windows of opportunity, the doors that opened, the podcast, the book, and I didn’t know, I didn’t have this term, right? And then I wrote my book.

Bill Gasiamis 39:24
My books all about post-traumatic growth, but I didn’t talk about post-traumatic growth in the book because I hadn’t discovered the work by Tedeschi and Calhoun yet to say ‘Yeah, exactly what I’m talking about guys, because these are the steps, and that’s what I wrote about. And I’ve got the steps on the screen here. Now I’m going to read them to you. Tell me if these resonate right? So you’ve had the trauma, the adversity, and then there’s been an emotional struggle and distress.

What Is Post-Traumatic Growth?

Bill Gasiamis 40:17
You’ve had the cognitive processing and the reflection time you’ve seemed to have gained acceptance and integration of the whole situation. You definitely have new meaning and perspective in this space. You’ve you’ve seen growth and transformation, and within that growth, there is appreciation for life. There’s a deeper relating to others. There’s realization of more personal inner strength. There’s discovery of new paths and opportunities, new possibilities. And there’s spiritual change, a deeper connection to spiritual spirituality, or a shift in religious beliefs?

Mike Kent 41:04
Absolutely, 100% Yeah, it’s and it’s funny, because we’re not adhering to a script. We’re not adhering to a kind of a dogma. This is natural, it’s just happening as you just said, you know.

Bill Gasiamis 41:25
But you’ve taken some positive steps right to that it leads to. So there’s some things that you do that other people do that lead to this.

Mike Kent 41:38
Yeah, I mean, I have a Facebook group that started with one person, and it’s called impairing disability, but I had such a hard time accepting that I help disabled people right, because I didn’t consider myself disabled. I used to call them disadvantaged or uncertain people, something like that. I can’t remember what it was, I couldn’t use the word this disability till someone said ‘Mike, it’s not about you, it’s about them. What language do they use about themselves? Bingo, of course, it’s disabled because, you know, with and then I change it to disabled than it do differently abled.

Mike Kent 42:43
Right? And I thought, then it just be, it’s okay. They say we, I actually help disabled and able bodied people. Now it’s everybody. Isn’t that because, it’s people, exactly just people, right? Because we’re all individuals. We’re all we’re all unique, we’re all different in one way or another, and yet, we all have we’ve got strengths and weaknesses, because that’s part of the human kind of a being that we actually are. We can’t have just good parts without the bad parts, although we would never call them good parts, you know.

Bill Gasiamis 43:25
People are injured human being and people are all traumatized. They’re all got some injuries., they’re all got some wounds. Some of them are not visible, right? There’s a lot of invisible disabilities. Mine are all invisible, all the stuff that I live with nobody sees. It’s the pain and the muscles, it’s the left side numbness and all that kind of stuff. And there’s the assumption that you’re, you’re all good now, you know, and it’s like, I’m all good, but I’m still physically, I’m feeling these things, you know.

Bill Gasiamis 43:55
At the moment, I’m having a few months of, like, really difficulty with my left hand and my left leg and the way that it all feels, but the level of annoyance that it’s causing, and the suffering and the pain has increased a little bit, but it doesn’t look that way to anybody else. Nobody else can see that. So I can’t describe it, I can’t bring people on board to understand, I can’t do any of that. And that’s people, most of us are going through something that they can’t describe or, you know, know how to explain, or bring you on board with.

Bill Gasiamis 44:38
So in the end, it’s like, okay. When I coach people for stroke recovery, there’s some clients that I help on a monthly basis, their caregivers, the people who care for them, are just as traumatized and injured and wounded as the person that they care for.

Mike Kent 45:00
Actually caring for, thank you.

Bill Gasiamis 44:38
And sometimes they’re both on that call, and other times it’s just a caregiver, and other times it’s just strokes survival. I mean, it’s just about people. In the end, that’s all it is.

Bill Gasiamis 45:14
I use the word stroke to resonate with certain group of people because I get them and they get me. So that’s the only reason why I’ve narrowed it to stroke survivors, you know, really.

Mike Kent 45:27
It’s the label that I wrote a post about this, but label that the society gives us, because I actually don’t believe that we are all disabled. It’s a society that gives us that label, why? Because they don’t make the handrail on the left hand side going up the stairs, if I can’t hold on to it, they don’t make, they don’t make lifts wide enough to feel will best to fit wheelchairs in because and so ‘Oh, it’s a disabled access or disabled entry? No, I totally disagree with that. So it’s now just about understanding that you mentioned invisible disabilities 80 there was an article that came out in France.

Mike Kent 46:16
I think 80% of all disabilities are invisible. And that’s amazing. 80% that means, and you if you actually put that out to the world, you know, that means, like 8 out of 10 people are carrying something, stuff, right, that nobody can actually see. And even if it’s not that number, it just makes you think of the enormity, right? And as you said earlier, that everybody, everyone is carrying their own set of ailments or difficulties and but we don’t get to see them.

Bill Gasiamis 46:59
Was ignorance bliss.

Mike Kent 47:02
It’s a good question, really good. What is naivety? Is naivety bliss, right? I don’t know which one it, but I think we are better, knowing this, I’m certainly better. I’m not doing I don’t I do on do question it if I would have this level of interest if I hadn’t have had the accident. I have to assume that might not be the case. But I can be just as much as you can be a voice in my little little circle, and that can then emanate, and if we can just have people be able to understand 1% 5% more than they did yesterday, that’s a result, right?

Mike Kent 48:02
Because then that would then cascade across everywhere, and then the world we’re better place we’ve got. We’re never going to go from 0 to 100 in a day. We it doesn’t work like that, we put one foot forward each time, and it’s the best foot forward at that particular time, and we can only do the best we can so and I believe, really, that it’s about progress, not perfectionism. That’s what I’ve thought about now.

Bill Gasiamis 48:33
Fair enough, you’re never perfect anyway. There’s no such thing as perfect.

Mike Kent 48:39
There isn’t.

Bill Gasiamis 48:40
Yeah, but there could always be an improvement in anything, and people who try to accomplish perfection really suffer.

Mike Kent 48:52
Don’t they? Are you thinking of anyone or people in particular?

Bill Gasiamis 49:00
Yeah, I do. I do think of somebody. I mentioned the person, but I’m thinking of somebody in some areas that perfectionism has in later life has become apparent to be an issue for that person, and they’ve been able to understand what, how it gets in the way of, and it’s usually in the space of in academia, like in an academic space.

Mike Kent 49:29
That’s interesting, you said in later life.

Bill Gasiamis 49:31
So younger, they had the same tendencies. And it was always when trying to deliver something that was going to be reviewed by somebody else critically. And perhaps the reason for the perfection was that they wanted to avoid the discomfort of being told that. That’s not good enough, or you haven’t done enough work, and the confrontation that that might create, and that person is not somebody who particularly enjoys confrontation, so avoids confrontation, not that I enjoy it, but I don’t mind a little bit of confrontation in that.

Bill Gasiamis 49:33
So that’s just to give you a bit of an idea of the difference what I mean by that. So then in later life, as that person sort of just matured more and more and done more study and realized that sometimes in academia, the perfectionism like for the last sentence on a document or an article or whatever that could take three hours, and that much effort in that last line was not going to be the outcome wasn’t going to be a better last line, and it wasn’t going to make the difference to the entire document and that at some stage you have to just write the line and hand it in.

Mike Kent 51:10
It’s so true, but you can I was in marketing, like fast moving consumer goods or consumer product marketing, whatever, but grocery brands and the amount of time that we would spend on refining a sentence, it’s like, what? Just get it out there, put messy action out there. You know, just no one’s going to notice it. It’s like, they’ll just take the whole message, right? They won’t pick each and every word out, and they all that’s not you shouldn’t put ‘a, you should put ‘an instead of a ‘the, you know, whatever.

Bill Gasiamis 51:53
Yeah, the posts that I’ve seen, the most commented on, like in social media, are ones where there is an error in the spelling, and it might be completely and totally obvious, and I think that’s the point of it. So in so people might miss the actual idea of whatever the post is on about on that particular but they pick up on the error, and then they they feel the need to comment about you made a spelling mistake, and then that post has way more traction than necessary. But because of that spelling mistake, people get caught up and worked up over it, and it’s just interesting.

Bill Gasiamis 52:38
And it’s your, I imagine your team would have developed the campaign to have a goal, you would have structured. It would have had all of those things already embedded. So it’s like robust. It’s a really good campaign. The last line is not going to make or break it, and “A” or “The” probably does the same thing anyway, and no one reads, whether it’s an “A” or “The”, or swaps them around, or does any of that work.

Mike Kent 52:38
Because you only need to be you need to have 70% comprehension of what you are actually reading or viewing to actually get an A gist of the message. And then at that time, you’re forming the idea in your head anyway of what it is which is actually different to what is actually being said anyway. So never going to get it, you know, it’s a it just doesn’t make it’s a waste of time.

Being Your Own Critic

Bill Gasiamis 53:34
I have a painting company, and we’ve been painting people’s homes and buildings and commercial property and all that kind of stuff for many years, for about 20 years, and at the beginning there was, it was me, and I needed to make sure that everything was done perfectly, so that there was no no complaints by the customer. So I would spot thing is that nobody would notice or spot that weren’t even errors or imperfections that I would then ‘Okay, I’ll touch that up. I’ll go touch that up. I’ll do that, and then I would hand it over. And in fact, it would be a great outcome.

Bill Gasiamis 54:14
The client would say ‘That’s fantastic. But then I met somebody who said to me, like ‘Only you, only you would notice that nobody else would notice that. That’s like a perfect wall, only you’re noticing that. But it’s not something that somebody else pick. And it’s like ‘Oh, okay, so how do we handle how do I handle the end of the job then? So the idea was, tell the customer to go around and critique your work a day or two before you finish, so you’ve done the majority of the work, and a day or two before you finish.

Bill Gasiamis 54:46
You give them the permission to go and totally critique it, even the obvious things that we haven’t finished yet, put them on the list. They very rarely come back with a list, because our work is really good anyway, and the things that I know, that I see, they don’t see, or they don’t care if they see it, right? So they didn’t even come up with a list. They barely come up with a list. They might have two or three things, the obvious things are always on there, yep. And then there’ll be other little bits and pieces that are on there that I knew were there that I was going to touch up or do.

Bill Gasiamis 55:29
But they pick those things. And then the things that I don’t know about, that sorry, that they don’t know about, that I know is not in their expectation to be done or is not necessary, or is not part of the job, or whatever. So it changed my mind completely. Is when I give the other person the opportunity to look at my work and criticize it or not, they don’t really feel the need to, and it’s, it’s a it’s a really good pass.

Bill Gasiamis 55:59
So we kind of apply this principle about 90%, achieving 90% sort of doing it to 90% of our ability instead of 100% is good enough because it’s beyond what most customers expect. Anyway, it’s such a strange thing when we’ve got and then if customers said ‘Oh, by the way, I did pick up on this or that, well then it’s cool. ‘Oh, great, now I can do it and actually meet your expectation further.

Mike Kent 56:33
It’s like, I don’t know if it is Google’s tagline or was Google’s tagline, but good enough is good enough. Totally abide by that.

Bill Gasiamis 56:46
So important for people to like grasp that concept personally that you know now that you’ve got energy to conserve, and you don’t want to be using up your energy on things that are not supporting your recovery and helping you have a really great day, or getting to your exercise or to your gym session, or to your counseling session, or whatever like, yeah, it’s really important to not waste time and effort and energy into things that are only going to make you go backwards.

Mike Kent 57:18
I agree, I was just having a conversation with somebody just yesterday, and they were saying to me, I’m having a really bad day. And I said, but you’re not, are you really? It’s never, ever a bad day. It’s a bad moment in a day, right? I have 17 different emotions every day, and on the of those 17, one or two are not very good, right? But they’re never, it’s never the whole day, right? So we need to stop, like, actually saying those things, because we’re convincing ourselves that we actually are having a really bad day, and then you’re just, like, layering on the different elements.

Mike Kent 57:54
And they all and, no, just stop, you know, just understand it’s bad moment and you come out of that moment. It’s like, I say that you can always you have a down. I never say ups and downs. I say downs and ups, you know, I want to end on and up. I don’t want to end up on a down. But it’s silly little things like that, you know, that make the difference, and it resonates with people. They actually understand that ‘Oh, okay, I haven’t thought about now. They’re just thinking that, ‘Okay I don’t have a bad day, or I want to end on an up.

Mike Kent 58:27
And I do want to, actually, whenever there is a darkness, there’s always a light follows that. I don’t know how long it’ll be, or my three day, 3 minutes, 3 hours, 3 days, whatever, but it will be light, yeah, and it’s about trying to have people to understand that there is beauty all around us and to actually perceive it, live it, breathe it, and recognize it.

Mike Kent 58:59
I think that’s is important, and I can do this, or we can do this because we’ve changed ourselves, you know, and we’ve seen that the difference between where we were and where we are and how we got to where we were, how we are. So, that’s motivational, that’s inspiring for me to be able to actually recognize that and help other people to to recognize that.

Bill Gasiamis 59:32
I like what you’re saying, because what you’re talking is your new default setting, that’s where you go most of the time.

Mike Kent 59:39
Exactly, exactly.

Bill Gasiamis 59:40
It’s not where you always are, but it’s where you default to all the time. And that’s a really good thing, like to be able to default to that version of yourself instead of the angry, depressed, emotional, whatever, which is, you know, we’re there we go there, we deal with that. We go through that, we get through that down, we go to the up, and we get through that darkness and we go to the light like the whole thing.

Mike Kent 1:00:08
Yeah, totally agree with that.

Bill Gasiamis 1:00:12
Have you in the last five years been able to get back to work?

Becoming A Recovery Coach

Mike Kent 1:00:15
No. Now I’m a recovery coach to help these people overcome anxiety and reclaim their lives so and I joined the I got trained in the Jay Shetty school, and then I’m now on another program, and it’s high impact coaching, and it’s phenomenal, really is phenomenal. And it’s all about being present or honest or being there for the other person, 100% for the other person. Yeah, it’s not about me. It never was, never will be. You were always there for the other person, what? However they are showing up, whatever they say, and it’s like you.

Mike Kent 1:01:11
I was a consultant beforehand, and before I was always, whatever is your problem ‘Okay, I’ll go away and I write it up, and here is the document, here is the CD, whatever. Here is the drive, and they put it in the third draw, if they don’t implement it, and it’s forgotten about, so this isn’t coaching. Is not all about giving people solutions. People already have the solutions in them, right? It’s about actually drawing it out and having them in their own time, understand where they are and and how they’re doing.

Mike Kent 1:01:50
And all of that came from I used to work in Chile, right, which is I lived a long, long Mohammed time ago, and I flew across halfway across the world. I didn’t actually know where Chile was, and from England, and got to San Diego, and I was in a company truck going to the factory with one of the other senior brand guys, and he goes ‘You know, we don’t want you here, Mike. ‘Okay, I’m sorry. ‘No, don’t take it the wrong way, but we don’t want you here.

Mike Kent 1:01:49
I’m gonna, well, I’m sorry, but I think I might be taking the wrong way, you know, as a really horrible thing to say, Oh no, no. I’m not saying you, you personally, and you what you represent, and the term of the phrase, and it was all about, they want to do things and learn how to do things in their own time. They don’t want to be given the book and told how to do it, because they don’t actually learn.

Mike Kent 1:02:54
And so I learned that from a very young age, and that stayed with me, and I right now, as a coach, exactly what just you ask questions and know that the other person has the wherewithal to actually find their answers when they are ready to find them.

Bill Gasiamis 1:03:11
You might have the tools, but they’ll be needing them at different stages. They’re not necessarily going to be needing them when you turn up with a tool book and go here, do this.

Mike Kent 1:03:23
No, no, no, great. And you don’t say that you can do whatever you want, but you just can’t do it all at the same time.

Bill Gasiamis 1:03:35
It’s no different to a book. Is it really like my book? I wrote a book. It’s has a weird title, the unexpected way that a stroke became the best thing that happened. Well, it’s it’s full of 10 steps, or 10 tools, or whatever you want to call them, and if you do all of those, that’s what people did. And all those people achieve post-traumatic growth and are doing amazing things to change their life. I’ve had these types of conversations with them as well. There’s really deep, meaningful conversations, but nobody did it in the order that I wrote the chapters in.

Bill Gasiamis 1:04:10
And nobody did it in the timeline that I did it. And nobody, you know, everyone did it in their own way, and they did it in their own time, and they came to terms with the different steps. It took longer for some steps, it took a shorter amount of time for other steps. But they all, they all found their new default way of being in the light in their life, and we just happened to all come together at the same time. So they had already been on their journeys. We found each other at the same time, and then we were able to unpack that and talk about that.

Bill Gasiamis 1:04:47
But I’m sure that if I bumped into one of those people, which I had done a couple of times, and said ‘Do this, they would have thought, get lost. I don’t do that, don’t tell me what to do, and I was the same. And coaching, what you’re talking about is really about holding the space for the other person. It’s just about facilitating whatever is about to unfold or needs to be discussed, or whatever’s going to happen. It’s just about literally facilitating them. And it’s not even holding the hand.

Mike Kent 1:04:47
I say it’s a catalyst, you are we’re a catalyst. So we just, you know, it’s the washing machine, so you put the powder in, and you spins, and now comes a close kind of thing, though, and we’re just helping them spin faster or better or cleaner.

Bill Gasiamis 1:05:47
Yeah, I love it as we come to the end of the interview, because I know it’s late where you are now, tell me about the what’s been the hardest thing about stroke for you?

The Hardest Thing About The Stroke

Mike Kent 1:06:02
I don’t think the question is asked in the past, is what it is, because I live with it every single day, the first point when I wake up, I have three seconds, two seconds or whatever of reality that ‘Oh well, I wake up, or new day, and then it’s that and then I get out of it five seconds later. But that is still there, it is a reminder that now I’ve managed I’ve managed it to become my mantra, to spur me on, to actually help and serve other people. But there is no denying that. You know, I say 17 emotions in a day.

Mike Kent 1:07:01
You know, I still cry and I get upset in personal moments pretty much daily. But that’s okay, because I actually believe now that tears are coming out of my body. So I’m actually getting rid of the poison out of the body, and then I can actually put something better in it. Problem is I’m still in Groundhog Day, so the next day I’m still crying, but there is so much richness. But I would be, I will be, it would not be me to say that this is a perfect life. We got the perfection, if there isn’t, it’s progress. And I accept that is what I am doing and how I’m doing it.

Mike Kent 1:07:55
I love what I’m doing and I love how I’m doing it. Would I like to do, be doing something else? It doesn’t matter, because that’s not what I am doing, but it doesn’t it does cross my mind, but I don’t give it the time and day or time and space to actually fester. But so I think that the worst part of it was the very beginning, when I came out of the coma, and the first two months, three months, when I was in a wheelchair and I just I didn’t, I couldn’t find myself. I didn’t know where I was, what I was doing, who was meant to be.

Mike Kent 1:08:39
This was not what was supposed to happen, you know, it wasn’t even my question of fault, but I couldn’t even blame myself, you know, because it it had been done to me. Yeah, and I thought ‘Why? So many times I ask that question, or I have asked myself that question, but I’ve learned to realize you don’t need to answer it. You just need to be able to move on from it and resource yourself from it, to move forward and bounce forward and do whatever you want to do, and how you want to do it in the best possible way you can, and that, for me, it’s service.

Mike Kent 1:09:26
So it gives service to others. I think that also has been difficult, because I think 10 years ago, I don’t think I would have said that, certainly not 20 years ago, but yeah, it is funny how life changes. Funny how you roll with the punches and that you actually you embrace what you what what you’re given and what you have, and deal with and do the best with it that you possibly can. And I don’t think anyone can ask any more of you than that.

What I’ve Learned From The Stroke

Bill Gasiamis 1:10:01
Yeah, very comprehensive answer. Thank you. What is something that stroke has taught you?

Mike Kent 1:10:09
I think the first word that comes into mind is patience, and I am not a I was never patient before. I mean, you asked my mom or whatever, like my twin brother, we are always like, but now I’m less, much less, but I’m still a little bit of silver, a bit of gun COVID kind of thing. But no, I think walking slower, being patient, reflecting, being doing meditation, doing mindfulness, you know, having my morning routine, realizing that I am not able to do as much as I could do or was doing before in my life.

Mike Kent 1:10:58
But I get to do what I want to do, and that’s a real difference, like the got to do and get to do. I really love that nuance, because I suddenly think, okay, I get to do, you know, this podcast, right? I was so looking forward to this, because I never been on a podcast before other one, and it’s like, it’s really exciting. And and that’s that that’s great for me, right? But it doesn’t mean that I’m going to be upset that I’m not doing 85 other things during my day. I’ve accepted that, you know, I do the best I possibly can. So I hope that answers the question.

Bill Gasiamis 1:11:42
Yeah, patience. I mean, yeah, that’s a great answer, even if without the explanation. I mean, it’s a great answer, and common, very common answer that people get. What would you like to say to the people watching and listening, who are all stroke survivors and paying attention to you at the moment.

Advice From A Stroke Survivor

Mike Kent 1:12:09
That we are all in this together, we are a unified group of people. There is not one person in my eyes that is better or bigger, or what, bolder than anyone else. We all have our stories, and all our stories resonate with someone out there in the world, and that’s what’s important, is to get the stories out there to show others who are less abled or are not for whatever reason, or are not as far ahead in their journey as we are, that it is possible everything is figure outable, right?

Mike Kent 1:12:52
It really, really is. It’s never, ever the end, I think that’s that’s so important is to have. It’s not about having hope. It’s about believing that what you have is makes you unique and makes you very, very special, right to the people who love you. And that’s enormous, I love that.

Bill Gasiamis 1:13:16
I love that too. On that note, thank you so much for being on the podcast.

Mike Kent 1:13:21
I know. Thank you. It’s been my pleasure, really has been you’re you’re a fabulous host and very insightful and very brilliant. Thank you very much, really enjoyed it.

Bill Gasiamis 1:13:33
Well. Thanks so much for tuning in to this episode of the Recovery After Stroke podcast. Mike’s story reminds us that while we can’t change the decisions or events of the past, we can find purpose and strength by focusing on the present and embracing growth. His insights about resilience, the power of mindset and helping others, are lessons we can all learn from if you found this episode helpful, I’d love for you to leave a comment, like and subscribe on YouTube. It really helps get these stories out to more people who need them.

Bill Gasiamis 1:14:12
And if you’re listening on Spotify or iTunes, a five-star review would mean the world to me. It helps others discover the podcast and connect with our community. Remember, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available on Amazon or recoveryafterstroke.com/book, and if you’d like to join our Patreon community, you can find all the details at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:14:42
Thanks again for being here and remember, no matter where you are on your recovery journey, you’re not alone until next time. Take care and thanks for listening.

The post You Can’t Change the Past: How Mike Kent Turned a Hemorrhagic Stroke into Growth appeared first on Recovery After Stroke.

A dog bite caused Bruce Young’s stroke. Learn how he turned this challenge into a story of resilience, recovery, and advocacy for stroke survivors.

Strokesurvivorsadvocacygroup.ca

Support The Recovery After Stroke Podcast Through Patreon

Highlights:

00:00 Bruce Young’s Introduction and Initial Stroke Incident
04:03 Stroke Caused By Dog Bite
08:00 Reflecting on the Stroke Anniversary and Personal Responsibility
12:03 Living Separately and Coping with Stroke Deficits
18:44 Advocacy Work and Personal Growth
24:01 Personal Reflections
31:54 Embracing Change and Future Goals
47:06 Final Thoughts and Advice for Stroke Survivors
59:40 Future Plans and Community Engagement

Transcript:

Bruce Young’s Introduction and Initial Dog Bite Incident

Bill Gasiamis 0:00
Hello everyone, and welcome back to another episode of the Recovery After Stroke podcast. I am so grateful you’re here before we dive into today’s inspiring conversation, I want to take a moment to thank this amazing community. Your support means the world to me, and I’m thrilled to see how our podcast is connecting stroke survivors caregivers, and allies around the world. I also wanted to remind you about my book The Unexpected Way That a Stroke Became The Best Thing That Happened.

Bill Gasiamis 0:35
It has been helping stroke survivors and caregivers find hope and practical guidance during challenging times. If you haven’t grabbed your copy yet, you can find it on Amazon or at recoveryafterstroke.com/book. Now let’s jump into today’s episode. I’m excited to introduce Bruce Young, a stroke survivor with an incredible story. Bruce’s stroke was caused by something you’d never expect, a dog bite.

Bill Gasiamis 1:05
Despite the unusual cause and the challenges he faced, Bruce has turned his experience into an opportunity to inspire others and advocate for stroke survivors across Canada. In this episode, we’ll explore Bruce’s journey his work in advocacy and how he’s rebuilding his life with resilience and determination. So let’s get started.

Bill Gasiamis 1:30
Bruce Young, welcome to the podcast.

Bruce Young 1:33
Thanks for having me.

Bill Gasiamis 1:35
Tell me a little bit about what happened to you.

Bruce Young 1:37
Well, it was the beginning, actually the beginning of the school year in 2017 and it was Labor Day, Sunday. And I, in our family, had one of several dogs, and one of the sheepdog. He was a very old dog, 16 years old, and my wife and my son had said ‘You know, gotta be careful, he might snap at you. And so what happened was, it was time for supper, and I went and reached under his head and said, It’s time for supper, and he snapped at me. And interestingly enough, that’s what ended up causing my stroke, because I have a big scratch on my nose.

Bruce Young 1:45
And it was about to start the school year, and I went to a doctor, and tried to get a doctor on Labor Day, Sunday. It’s not an easy task. And so he just taped it back the skin, back in place, and then when I started the school year, I was just freaking out the whole time. I couldn’t keep track of what I needed to do, and my GP was, in fact, he was suggesting, he actually gave me prescriptions so I didn’t have to teach certain classes. And I was getting a major headache, and major headache around the back of my head, and I made it through.

Bruce Young 3:16
I managed to survive through most of September, and then October 21 I was walking around my bedroom, and my son said ‘Dad, you’re having a stroke, which I had no knowledge that was happening. And so the next thing I know, 911, and off I go to the hospital, and they put me in critical care. In critical care for neurology, and they didn’t quite know at that point what had caused my stroke. And strangely enough, the emergency physician who was my neuro ophthalmologist, who was the one that treat treated me and got me up there.

Stroke Caused By Dog Bite

Bruce Young 4:03
And at that point, for the next couple of days, they didn’t know what had caused the stroke, and then what they did is they sent a SAT sample of my blood over to The CDC. CDC is the branch of our medical system that goes and tests for COVID, etc. And they got the blood over there, and they figured out it what was causing this. The stroke was actually a canine bacteria. So I got a canine bacteria from my dog, and then when I was in the hospital, they did some searching in my heart, and they found a big lump of the cap bacteria in my heart.

Bruce Young 4:57
What had been happening, apparently, is the bacteria was being sprayed onto the back of my brain, and so they figured it all out using MRIs, and they’re all set to ship me off to the to do some in to do some heart surgery, open me up and clean out the part of my heart that had that in but few hours before that, the medical staff said ‘Well, maybe you could try an antibiotic. So it was on an antibiotic for six week drip, and I didn’t have to stay in. So I went home naturally during that time, of course, I couldn’t be teaching so.

Bruce Young 5:41
So then I got through with bunch of MRIs, they were able to figure out that the bacteria had been killed, but I still, because of the the results of the stroke, I wasn’t able to pull myself together to be able to teach. But believe it or not, I had nothing, no problems physically or below my neck. All of it was happening in the brain. So there are a lot of things that have stuck with me, which have prevented me from being able to do a full time job. So I had to go on leave.

Bruce Young 6:30
I was actually on medical leave from teaching for two years because I’d never taken any sick days off. So I had 383 days. So I was sick for two years, and then, because of my age, I was able to finish the sick days, and then I was able to go on to being retired.

Bill Gasiamis 6:59
That’s quite the journey. So the stroke deficits that you have been left with, the cognitive ones. What are they? What are you not able to do that you used to do once upon a time?

Bruce Young 7:13
Well, not able to if there’s a bunch of people in a room, for example, I have trouble focusing on one or two people have, I guess, what you would call brain fog all the time. And luckily, a friend of mine, who I met, he was able to be my driver, because of the stroke, I had lost 1/3 of my vision. So the neurologist said ‘Nope, you can’t drive anymore. So that took that piece out of my hands and I guess, you know, I get anxious very easily. So if I start to flip out on you, I’ll just put a rubber mallet on my head and get me to stay in my seat.

Reflecting on the Stroke Anniversary and Personal Responsibility

Bill Gasiamis 8:10
Okay, great. What happened in october 21 so you’re coming into the anniversary of that. Do you reflect on the anniversary at all? Do you think that maybe you should have done things differently? Do you have any of those types of thoughts, or do you just accept that it was one of those crazy things that happened that wasn’t really your fault or anybody’s fault, and this is just something that you have to deal with. How do you compre? How do you deal with it? Or how do you work it out and hit?

Bruce Young 8:45
Well, it’s interesting because my, as I had mentioned, my wife and my son had said to me ‘Don’t do that, dad, and I did. So I still hold it. I still hold myself responsible, which is very hard to accept, because through through my life, I’ve been looking back and realizing all the things that I didn’t listen to other people’s advice, and it’s made things difficult in terms of whether it’s my career or my family. So it’s taken a lot of positives away from the way I can run my life.

Bill Gasiamis 9:25
Yeah, the dog, did it get startled? Or is it just because it was old and it just, do they get grumpy, what was it that the dog reacted to.

Bruce Young 9:43
Well, he didn’t, you know, he was a, like we talk about humans being the old grumpy guy. So he was an old dog, and he didn’t want to be bothered to go get his supper, because he didn’t like to get up. He was pretty arthritic through etc, and so he was quite happy to just be lying down and not have to be getting up. And so he was taking offense to me wanting to him to do something.

Bill Gasiamis 10:17
Let’s take a quick break here before we continue with Bruce Young’s incredible story, I want to share a little bit about how you can support this podcast. Since day one, I’ve personally covered the costs of producing these episodes to ensure that stroke survivors, caregivers and their loved ones have access to resources and stroke stories that inspire and uplift. If this podcast has added value to your life, I’d love your support on Patreon.

Bill Gasiamis 10:47
By becoming a patreon at patreon.com/recoveryafterstroke, you’ll help me continue creating this content while joining a community that’s dedicated to stroke recovery and growth. And don’t forget about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s available on Amazon and at recoveryafterstroke.com/book, offering practical steps and motivational stories for your recovery journey. Now, let’s get back to Bruce Young and hear more about how he’s using his experience to support the stroke survivor community. Was he just letting you know?

Living Separately and Coping with Stroke Deficits

Bruce Young 11:30
Yes, exactly. And with my other two dogs, he snapped at them, and I think they moved back a little more quickly so they didn’t get a chance to to actually break the skin on their bodies, and they had a lot of fur anyway. But I think the long-term effect of all of this is that on January 2 of this year, my wife said ‘You know, we’re going to try an experiment, and I want you to go live somewhere else. And you know, when I hear you talking, for example, about your wife’s birthday, and other people talking about, you know, like Thanksgiving.

Bruce Young 12:17
Here this weekend, I don’t know how much you celebrate in Australia.

Bill Gasiamis 12:25
Not so much.

Bruce Young 12:26
You don’t celebrate Thanksgiving.

Bill Gasiamis 12:28
No.

Bruce Young 12:30
No? Anyway, it’s the whole thing with you get up the turkey, etc. So it’s Thanksgiving, so it’s a time to be thankful for all the things that all the things that you have, and it’s because it’s the first year of me having to be all on my own. It’s really challenging because I don’t have that Thanksgiving spirit.

Bill Gasiamis 13:02
Okay, now, when you mentioned going and living on your own, are you talking about a separation? Are you talking about, what are you talking about?

Bruce Young 13:13
Well, that’s exactly it. We’re not divorced at this point, but I think it’s a nice situation for my wife, because she has the house, and it’s worked out well, because I’m actually living in the condo that both that actually belongs to my wife and her sister, but it’s a condo that my mother in law was living in, and She had broke her hip, and she and my wife and her sister did not think that it was going it would be a advantageous for her to go back and live in the condo. So she’s now living in a care home, and I’m living in the condo.

Bill Gasiamis 13:59
Okay, so life’s quite different to what it was in 2017.

Bruce Young 14:05
Yes, very much. So yeah and but one of the things after two years. Well, in 20 June, 2019, I had a a massive seizure, and I think you suffered that as well. Did you not?

Bill Gasiamis 14:29
I suffered something that may have been a seizure. I didn’t have a massive seizure, a blackout, or anything like that, but I’ve had certain events that mimic that. Tell me about yours.

Bruce Young 14:39
Anyway, what I was on the phone with my wife. She was working, and we’re just chatting for a few moments, and suddenly my phone went dead, and literally, I had just collapsed in the house, and she immediately called 911, back to the hospital, and was there for four days, and it turned out that I had had a massive seizure, and the only thing I remember the time in hospital was a whole bunch of very large raspberry I guess they’re raspberries or strawberries, all on like wallpaper all around the bed the room of the hospital.

Bruce Young 15:27
So I was seeing things. And then after that, I came home, and the neurologist put me on an anti seizure medication, which I’m still on, and that’s pretty well it for medication. But the as a result of me having the stroke and the seizure and because of COVID, lot of the organizations like the March of Dimes. You ever heard of March of Dimes?

Bill Gasiamis 16:02
No.

Bruce Young 16:04
It’s an organization that does provide services for people with disabilities, and one of them that they took on in a big way was people with stroke. And so we are having lots during that COVID time. We were having lots of, sorry, lose my words a little bit. Am I in the right position?

Bill Gasiamis 16:34
You’re perfect.

Bruce Young 16:36
Okay, so in that so as a result of a lot of my Zoom calls, I met people from all across Canada, and they all had the same complaint that as soon as their time in the hospital was done, they basically were out the door and they said, essentially they said ‘God love you, and in many cases, we’re not given any future, any direction as to what they could do to further their rehabilitation.

Bruce Young 17:16
And when I heard the same story over and over again, I said ‘Well, maybe it’s about time stroke survivors had an organization that could speak on behalf of us, because like the Heart and Stroke Foundation and the March of Dimes, were large organizations whose function was to provide services, and they were providing services on their behalf, and not on behalf of stroke survivors.

Bruce Young 17:51
And so I formed an organization which goes right across Canada called stroke survivors advocacy group of Canada, and we now regularly meet over zoom, couple of times a month, and we’ve got involved in advocating for stroke survivors, because the rules for and the protocols for stroke survivor rehabilitation are are available from the art and strokes Foundation created a a whole book about what those recommendations should be, but the hospitals and the medical system are not required to implement those.

Advocacy Work and Personal Growth

Bruce Young 18:43
So what we’ve been doing recently, in right now is to connect with the Minister of Health for Canada and having chats with him and his staff about what protocols are there and and get those so that they are our rules as opposed to being recommendations. So working along with that, and still building on, on getting more and more people from across the country to work with us.

Bruce Young 19:20
It’s challenging to get stroke survivors, because you can’t walk into a hospital and ask ‘Well, who are your stroke survivors? There’s all the whole issue of confidentiality, which kind of puts kibosh on us being able to connect and identify the people who are stroke survivors.

Bruce Young 19:20
You’re right. So you’re fairly busy doing things. You’re doing all these things, and you still have cognitive difficulties.

Bruce Young 19:56
Yes.

Bill Gasiamis 19:57
Is this work that you’re doing helping you with those cognitive difficulties. Is it helping you to keep going? How does it support your recovery?

Bruce Young 20:09
Well, I would say it keeps me move moving forward. And because the people I’m working with are stroke survivors, I can’t simply say ‘Well, because of my stroke, I can’t, I didn’t remember to do this or that, because I get kick in the pants from other stroke survivors saying ‘Well, you can’t blame strokes or not. You’re the things that you’re forgetting to do because you’re a stroke survivor, which I think is a good way to connect stroke survivors, certainly across Canada.

Bruce Young 20:47
That’s one of the reasons why I wanted to connect with you, because I’m sure there are things that are going on in Australia and certainly in other countries around the world that can support what you’re doing as well as supporting the things that we are doing in Canada.

Bill Gasiamis 21:05
There may be certain things I’m not really involved in that side of recovery. I’ve provided some of my time as a volunteer for the Stroke Foundation here, done a little bit of work like that, but I haven’t really looked into the other things that go on around stroke. There’s tons of people doing that, in fact, and that’s okay. So, my whole thing is like bringing stories of stroke survivors into the public domain so that other stroke survivors finding them can feel less isolated and like somebody else knows what they’re going through and understands the situation.

Bill Gasiamis 21:52
But yeah, and I think that this Stroke podcast that I’m doing here helps, perhaps encourage people from the stroke community to get up and do something about whatever’s stopping them from accessing the type of care that they need or the type of care that other people needs. And it’s good that you reached out, and it’s good that you’re doing that as well on your end, because I feel like part of what you’re doing is providing me some kind of a purpose.

Bruce Young 22:29
I just met a lady ‘Well, I met her online, through one of the stroke the stroke zoom calls, and she lives on the on Vancouver Island, and she was sharing with me, she had her stroke, and she has two daughters, 57 and 58 and they only live, you know, a few blocks from where she lives. But they no longer will talk to her, because they’re saying to her ‘Well, you, you didn’t have a stroke. And just, you know, in terms of my own situation, I’m seeing that in spades with my wife basically saying you didn’t have a stroke.

Bruce Young 23:13
You can’t blame your stroke for what’s going on with you. And so that’s become part of my particular commitment to the organ to stroke survivors organization is to seek out people who are put in a position where, you know, because of something that happened to them, it should not be people, non stroke survivors, who are in a position where they can say and do whatever they wish and are not held accountable for their own behavior, which is very hurtful to people like yourself and me.

Personal Reflections From The Dog Bite And Stroke Recovery

Bill Gasiamis 24:01
So, you don’t look like a typical stroke survivor, according to them, and they can’t comprehend how absolutely this incident has caused all of the changes in the way that you are have experienced since the hospitalization and all the other things that you went through, there’s kind of like a misunderstanding of what’s happening to you.

Bruce Young 24:27
Yes.

Bill Gasiamis 24:29
How would you say your personality has changed? Has it changed? What do you notice about yourself that’s different, other than the deficits, the fatigue, the the brain fog, etc.

Bruce Young 24:44
You know, I don’t really notice any significant changes, because I find that, you know, through my years of teaching, I feel quite capable of teaching. If I were able, to overcome some of the issues in terms of anxiety, etc, that I face, if I were to walk into a classroom, which I know I can’t do, and it’s been pointed out to me by my wife several times, and by a psychologist I was doing some counseling with him, and I was, interestingly, he was a psychologist that set up a program for teachers to work with their anxiety as teachers.

Bruce Young 25:37
And when you went through the sessions with me, he said ‘You know, I really can’t help you, because you need to see somebody who specialized in narcissism. And so that’s a big label that’s been put on me, and you know, I’m certainly pursuing online things that I can do, counseling, etc, to try to deal with that aspect of me and learning that narcissism is not something that you can recover from, same way, in many ways, stroke is not something you can fully recover from.

Bill Gasiamis 26:23
I was gonna say, is narcissism a label they put on you now? Or is it a personality trait that you’ve had? Is it something that’s emerged? What do you think about that whole thing? Is there a difference between who you used to be and who you are? Or as perhaps the narcissism, if it was there, has that become more narcissistic?

Bruce Young 26:48
Well, that label was put on to me a number of years before I had my stroke, and I think it’s be been amplified, and it’s given a really solid reason for my wife to say, take a hike. And it’s unfortunate because now that I’ve taken on that label, I’m trying, attempting to do something about it, but I’m not in a family or personal position to really change what has happened in terms of my family relationship.

Bill Gasiamis 27:31
Okay, with the anxiety. Is the anxiety a new thing that you’re experiencing since the stroke, or is it something that you had to deal with previously as well.

Bruce Young 27:41
No, I think it’s been amplified. I was always the kind of person who worried about things. I was, always my mother telling me I was a worry wart. So it’s been something that’s been with me for a long time, but it is something that that certainly is is more amplified and is sticking with me.

Bill Gasiamis 28:03
And how do you track it? How do you know that you’re going into a space where anxiety is becoming an issue, and what does it manifest like, and how do you settle it down?

Bruce Young 28:19
Well, quite been taking a number of mindfulness classes, and so if I start finding that I’m getting over anxious, I will lie down and do a mindfulness session with with myself. In fact, I was doing some of that before I joined you this afternoon to make sure I kept my kept myself in order.

Bill Gasiamis 28:46
Yeah, you’re doing a great job of, you know, delivering your message, having a conversation with me. Everything’s fine and as a result of the things that you’ve learnt since the stroke, has it been a little bit insightful? Have you been able to kind of get a grasp on some of those long standing challenges that you’ve had your whole life, that you’re dealing with now? Is it kind of giving you a little bit of hope that these things are manageable?

Bruce Young 29:22
Yeah, I think so I would say that because of the stroke, as I said, some of those things have been amplified, and I try very hard to keep them in check, but I just got a hold of a book, and I’m just going to slip away for a second here. Apparently this is a book that was that was written over 10, 15 years ago, and the title is ‘Who Moved My Cheese. And I don’t know if you’ve ever heard it was written by Dr. Spencer Johnson. I have heard it’s really, you know, I could send, I’ll send you a copy if you’d like.

Bill Gasiamis 30:16
Tell me about it.

Bruce Young 30:18
Anyway. It’s very interesting because it’s putting four creatures into a maze, and you’ve got two mice, and you’ve got two mini humans, and there’s a cheese, there’s cheese in the maze, and the four creatures find that lump of cheese. And then the cheese runs out. I guess we gotta go find some more cheese, and they head off somewhere, whereas the humans say ‘Well, we better find out where the cheese all went. So they intellectualized the whole thing and make it and it talk.

Bruce Young 31:22
It’s talking about change, and it’s talking how humans don’t adapt well change. So for me, I think it’s a very useful book. And I found a few other other books as well, think there’s this guy, Bill Gasiamis. I think he wrote a book that has been very, very useful for me to kind of get my act together and realize that, as you said little while ago, I’ve got a mission, and so do you.

Embracing Change and Future Goals After The Stroke Caused By Dog Bite

Bruce Young 31:56
That’s why I’m so keen to work with you and work with other organizations, like the World Stroke Organization, etc, to have us create a concerted effort to provide the best services and care and recognition of people with stroke.

Bill Gasiamis 32:20
Thanks for the plug. I’m doing my best. So humans are creatures of habit, and change is something that does throw a spanner in the works. Would you have been the type of person before stroke to avoid change as much as possible, and has the change that stroke caused thrust you into this space of having to deal with something that you previously could avoid dealing with.

Bruce Young 32:55
Absolutely like I taught in a high school for, I taught 25 years. My 36 years of teaching, I taught in the same high school for a number of years, for 20 for 25 years. And during that time, there are other people in the school district who would come to me and say, ‘Well, why don’t you consider doing this, or why don’t you consider, you know, applying for this position in the district, and a lot of them were technology related, because at the time, I was the sort of the computer guru in the school, and I said ‘No, I still have things to do In this school.

Bruce Young 33:41
And I think it was a primary example of me saying ‘No, no, no, I don’t want to change, I want to stay here. And what was happening around me is that there were techy people, young, techie student, teachers that were coming to the school and doing video production and doing lots of green screen and doing all kinds of interesting, innovative things. And then the final year, when I was, which I couldn’t teach, I was being asked to teach a couple of courses that were technology based, but I was being asked to teach a grade 11 course.

Bruce Young 34:24
Which all the kids in the school had done the grade eight level of the course, and so they knew all this stuff, and it was a lot of programming, and I was left in a position where I couldn’t teach this stuff. And on top of my on top of my stroke symptoms, I had this kind of stuff happening to me. And I think talking about this cheese, here it is.

Bruce Young 34:51
It’s really giving me a kick in the pants to say ‘You know, you set yourself up for the position you were in when you left teaching. And I think the stroke gave me a major kick in the pants to say ‘Well, you know, I should have seen this thing happening. And the stroke, in some ways, gave me an excuse not to have to change.

Bill Gasiamis 35:19
Yeah, perhaps you’re good at finding thing excuses and reasons not to have to change anyway, if you’re kind of that way habituated, if you’re in a school for, you know, three decades, and you’re teaching the same thing and you’re avoiding that change, is it avoiding the change? Is it because of you’re comfortable? It’s a thing that caused anxiety, perhaps change or learning new things, or being out of your comfort zone? Why do you think that was?

Bruce Young 35:59
Well, there was a course that was introduced provincially, and it was called Planning 10. And I was put into that class when, when program started, and then 10 years later, the provincial government decided they were going to change the curriculum, and they were going to introduce a similar course at the grade 11 and 12 level. And most of the stuff in the grade 10 course, I found was was at was perfect timing for kids to learn how to make a Resume, how to do interviews, and by the time they got to 11 or 12 in my school in particular.

Bruce Young 36:44
The kids were all working McDonald’s and working at other places. So to introduce them to writing a resume or doing an interview, they’d already done it so, you know it, and it gave me justification to be able to say ‘Well, that was a dumb thing for them to do. And so it again, gave me that opportunity to essentially say ‘Well, I was right in the first place. Why’d you do that to me?

Bruce Young 37:13
Which, of course, comes back to we were talking about the fact that I got the bite in the nose. And I had been told by someone already watch yourself. So it’s the whole thing has caused me to have a complete reflection of my life. And that’s kind of where I am right now.

Bill Gasiamis 37:34
Yeah, it’s interesting how stroke does that for a lot of people, it does make them reflect on decisions, behaviors, attitudes of the past, and they somehow, seem to get an understanding that having the same approach to life after stroke just won’t work. Is that where you’re at? Do you see that being problematic if you were to continue to take the same path that it’s just not feasible to do that with what you’re dealing with now.

Bruce Young 38:10
You know, nobody’s really asked me that question, but you’re absolutely right. And so every time I talk to yourself or talk to other other stroke survivors or even family members, etc. You know, the same question is being posed by them to me and saying ‘Well, maybe what you need to do is instead of having Bruce 1.0 is go to Bruce 2.0 we actually had one of the stroke survivors here. He made up a little story about going from, he’s also stroke survivor going from 1.0 to 2.0 and the way he described it is you take a piece of paper and it’s smooth and flat.

Bruce Young 39:08
And then you crunch it up, and then you try to smooth it all out again. And the smooth and trying to smooth it out becomes your 2.0 and you have to understand that you can never return to the 1.0 because there are things that you can’t get all the wrinkles out of that piece of paper. And you know, each of these things has been an education for me to take a position that I need to do some things and I need to change in ways that I never thought I would have to.

Bill Gasiamis 39:46
That’s a great analogy, that paper analogy, I love that because it’s the same paper. It just has a whole, a whole bunch more texture on it.

Bruce Young 39:55
If you go, you know, I could send you the link, it’s on YouTube, they’ve made the little bit. He’s made a little video of it.

Bill Gasiamis 40:05
Yeah, send us the answer link, and then we’ll put it on the show notes so everyone else can have a look at it, if they like. Yes, so it sounds like you’re embracing change now.

Bruce Young 40:15
Yes, damn, and you know, talk to me, even when you come to visit my group in January this coming year, that you probably may notice some differences in me, and I’ll probably notice them in you, and it’ll be an opportunity for us to, you know, compare notes. And certainly you can have a lot of interaction and dialog with a lot of the stroke survivors that are in my group here.

Bill Gasiamis 40:48
Yeah, so the change that you’re making now, what have you noticed that’s different about you now that you’re starting to embrace change? How have you grown from that experience?

Bruce Young 41:07
I find it challenging to answer something like that, because there are a lot of things that I didn’t realize, that I still don’t recognize, that are necessary for me to change in order to be able to find more cheese. And every time I get a hold of something that’s been written about stroke, there’s always something in it that sends me to pursue different things about myself that I didn’t think I needed to be worried about changing. And I know you had an interview with, I can’t remember the name of the doctor, but the one who did the brain HQ application.

Bill Gasiamis 41:59
Dr. Michael Merzenich?

Bruce Young 42:01
Yeah, and I’ve been religiously doing one of those exercises every night, because I did it when I first my son actually gave me that gave me the subscription to it. Two years after my stroke, after a while being my typical self, I said ‘Well, now, now that I’ve got it, because I was going through the mall very quickly and and then I stopped the subscription, because I think I knew it all, and now I’m going back to it and realizing I didn’t know it all.

Bruce Young 42:40
And, you know, taking on my conversations with you and the book that I’m reading, the books that I’ve been reading, and things that are getting me to reassess myself and my new situation is really challenging, and I didn’t realize the extent of it until I was shown the door in January.

Bill Gasiamis 43:10
Yeah, what does the cheese represent to you? So I know that in the book, it talks about cheese, but what is it for you? I know it’s not cheese exactly, but it represents something. What does it represent for you?

Bruce Young 43:28
It mean it for me, like the whole thing with cheese is your relationships and so forth. And I think of the cheese represents relationships for me. In other words, I may not be able to reconcile the situation with my wife, but I’ve connected with an awful lot of people, and I feel a real sense of warmth, particularly the woman I talked about, who’s two daughters, have essentially turned their back on her.

Bruce Young 44:03
And it just gives me that as a result of what I’ve been put in, as in moving into another location, I think some of these things are realizing me that there’s a broader scope and perspective on people who’ve had stroke, and I just want to get that message out to my wife and to anyone else I can who will listen.

Bill Gasiamis 44:38
Does the physical move that you made into a new location. Does that support your ability to change? Because that’s a big change in itself, like you’ve gone to this new location, new environment, new different people around you, or less people around you are. There’s a whole bunch of things that are different just because you’ve moved there. Does that support the change process?

Bruce Young 45:09
Absolutely. I think, through my 43 years of being married, that there are many situations I can relay where people that I was working with at school or in other organizations, I would be asked to go and participate in something, and my wife would say ‘No, I’m too afraid of being in groups, so I we’re not going to go. And that’s something that happened time and time again, and I think with the separation now. I feel like I’m in a position to be able to search out those social connections that I wanted, and I’ve wanted for years, and that’s ended up being a real benefit for me.

Bill Gasiamis 46:02
Seems like they’re gonna add value to your life. Just wait till they pass, is that an alarm?

Bruce Young 46:16
There’s fire station right near me.

Bill Gasiamis 46:19
Okay, so they’re off to a job. Where were we? Tell me, what was I talking about?

Bruce Young 46:43
You were talking about how the move had as has required me to make other changes in my life, and I was indicating that some of the changes that I’m now able to do was things that I felt stifled to do when I was living in my house.

Final Thoughts and Advice for Stroke Survivors

Bill Gasiamis 47:06
Yeah, so you’re going back and doing things that you never got a chance to do for many, many years, and now that’s added a lot of value to your life.

Bruce Young 47:17
Yes, and believe it or not, something I’ve always wanted to do was to go on a on a boat cruise. And friend of mine who, who helps, who does the driving for me, when I need to go somewhere, I walk with a walking group, and the walking group is for singles, well, it’s for people. Most of them are, you know, divorced, or they’re all basically my age. I’m in my mid 60s, and they were, most of them are in their 70s.

Bruce Young 47:55
Most of these people, they’ve got a chunk of change in their back pocket, and they’ve been on cruises several times. And then six months ago, this friend of mine said ‘You know, people have been asking if I would go on a cruise. So beginning of February, I’m going on a cruise for the first time in my life.

Bill Gasiamis 48:21
That’s exciting, yeah, how long? How many days?

Bruce Young 48:27
It’s 14 days it’s a Caribbean cruise. So you start in Fort Lauderdale, and then you have two seven day cruises, one way goes, one cruise you go north, and the other cruise you go south. So we get to see a lot of the Caribbean by doing that.

Bill Gasiamis 48:50
And do those cruises stop at certain locations for you guys to get out and have a look around.

Bruce Young 48:58
Yes, they do, but have to watch my pennies, because all of these locations have their hand out.

Bill Gasiamis 49:08
Indeed. Yes, that’s part of the honey trap guy, isn’t it? Isn’t it’s the whole point of it is to extract from the tourists.

Bruce Young 49:18
Yeah, exactly.

Bill Gasiamis 49:21
Do you have to do any special kind of preparation to put yourself on a ship for seven for 14 days in that sort of situation as a stroke survivor?

Bruce Young 49:37
I’ve come to rely on my friend who drives me because he’s the one I’m sharing a cabin with. So that makes it somewhat easier for me to deal with it, and but the only thing I gotta, I’ve made sure of, is my passport is good. Good for is good until December 2025 pardon me, keep forgetting what year it is.

Bill Gasiamis 50:13
So, you’re going to be supported. You’re going to have somebody with you the whole time that knows you.

Bruce Young 50:17
Yes.

Bill Gasiamis 50:17
Knows your situation. So you got, you got that kind of all sorted. So that person helps you with not forgetting to get back on the ship perhaps as well.

Bruce Young 50:29
Yeah, it’s interesting. He’s 10 years older than I am, and, you know, it’s not like he remembers that everything all the time, but we’re going with eight people from the walking club, and some of these people have done a lot of cruising, and they all generally, you know, they are familiar with the fact that I forget things and leave things around. So I think they’ll be helpful as well. So I’m feeling quite confident that I’m going to be looked after.

Bill Gasiamis 51:07
Yeah, sounds like the community of people there to make sure that you’re on the right ship at the right time.

Bruce Young 51:16
Yes, right.

Bill Gasiamis 51:19
So, what’s the worst thing that can happen you get on the wrong ship and you end up in another country and just another adventure to get back.

Bruce Young 51:28
Exactly, yeah.

Bill Gasiamis 51:32
It’s interesting to finally meet you and observe your story and hear it about the whole path, and I know we’re only touching on little bits and pieces of people’s stories every time we have a one hour interview, but it’s very insightful to hear you talk about the things that you’ve become aware of and the things that you’ve implemented, the changes that you’ve made, the habits that you’ve broken, how you’ve done things that have been out of your depth before.

Bill Gasiamis 52:06
Even though you’re quite capable, you have to be that quite a capable person to teach for the best part of four decades, and then to still have these little bits and pieces that you need to work on, just goes to show that everybody’s a work in progress. Nobody works out anything yeah in their life, do they?

Bruce Young 52:30
Yeah, exactly. The stroke survivor group, the first zoom call, we had to meet everybody and decide we were going to do this. They’re all sitting, in their zoom windows, and they said, and I said ‘Well, we need somebody to be in charge. And they literally in the Zoom call, pointed at me. So I’m the president of the organization, so it’s good for me, because I’ve had to look at variety different personalities, and to adapt to them and apply what they what their strengths are and do, and to put those into effect in a variety of situations.

Bruce Young 53:14
Whether they’re some of them are very politically as suit, particularly the ones in Ontario. And then it’s kind of forced me into that position as well, because the we introduced in, well, it 2022, I guess it was a new federal law, and it’s called the Canada, Canada Disabilities Benefit. And the purpose of that law was to bring, it’s actually the prime minister said it was going to bring people out of out of poverty, all people with disabilities are poverty, and the person who initiated that, Bill is my MP, and she lives in North Delta.

Bruce Young 54:16
She was born with a disability where she has, she does not have a full complement of rods and cones in her eyes, so she can’t see as well as everybody else. And so, you know, and she was actually in a couple of Olympics, Disability Olympics a number of years ago, and I’ve had talks with her directly. I’ve also had talks with the the provincial the provincial representative. We’re actually going into an election in two weeks, and I sat down with my local and my local MLA, they’re called minister.

Bruce Young 55:06
What’s that member of legislative assembly, and I sat with him for full hour. He gave me 100% of his attention when I start, I told him the story I told you, and he was quite surprised, and he said ‘You know, I’m make sure I can help you. I can do things that are going to support stroke survivors in Canada, well, particularly in BC, because that’s his jurisdiction.

Bill Gasiamis 55:39
That’s good work Bruce, definitely good work there. I hope it gets you the results, and then it gets other people the results that you’re hoping for, and I think it will. And all this type of stuff can only be positive as we get to the end of the interview. We wrapping up now, I’d love to ask you the three questions that I ask my guests, and the first one being was, What’s the hardest thing about stroke for you?

Bruce Young 56:10
I think, based on my experience, it’s having the people around me who are not prepared to accept the fact that I had a stroke, and what the ramifications are of a stroke.

Bill Gasiamis 56:33
That’s definitely difficult, the misunderstanding.

Bruce Young 56:36
Yes.

Bill Gasiamis 56:38
And not being able to convince people would be very frustrating that would.

Bruce Young 56:48
Yes, yeah.

Bill Gasiamis 56:51
Yeah, I know most stroke survivors go through that. They go through that to a point where they can’t iterate to somebody what it’s like to have a stroke, and why, perhaps I’m not being lazy, why fatigue is a real issue, and why I can’t make in complete sentences and all that kind of stuff.

Bruce Young 57:12
I actually work with UBC, they have a stroke behavior lab, and what they’re doing is a lot of research, cognitive and physical research with stroke survivors, and I’ve done a lot of the research projects, and then I got on the bandwagon with them, and I wasn’t going to let it lie so, but every second day, I’m sending them another person I know of who is a stroke survivor that can be there, another guinea pig for them.

Bruce Young 57:48
So I’m always, as you can see, I’m always looking for opportunities, things that I can do to, probably, in the long run, get people to acknowledge and recognize what I was saying before.

Bill Gasiamis 58:04
What is something that stroke has taught you?

Bruce Young 58:12
That you cannot change a lot of people’s opinions, And that to try to do that in a head on direction, is not something that’s going to work. And, you know, I’m thinking with the people that I’ve been working with is if I can do it as in somewhat of a roundabout way, or let people know that there is that difference between a stroke survivor and other people, and that they will, in some capacity, be able to acknowledge that there are differences.

Bruce Young 58:56
And that others need to at least acknowledge that. But they may not change their opinions about stroke survivors, but at least they, I would like to see my wife say ‘Yes, you had a stroke, and yes, there are things that you have to live with, that I can’t.

Bill Gasiamis 59:20
Yeah, there’s all my guests have been stroke survivors, or people that help stroke survivors, or caregivers of stroke survivors, all the people listening, the same group of people, what would you like to tell them?

Future Plans and Community Engagement

Bruce Young 59:40
Well, it’s been every strokes, stroke support group I’ve been in, the comment is ‘Never stop, never stop trying. And in my case, the never stop trying is meeting with you or other people around the world or talking to other people and realizing it’s not just being able to get out of a wheelchair.

Bruce Young 1:00:06
It’s being able to get other people out of their wheelchair to make stroke something that we need to realize, it is a lifelong experience, it’s not something that’s going to disappear. It’s not something, as a neurologist say ‘That’s going two years from now. Well, you’ve done all you can do, that’s it, off you go.

Bill Gasiamis 1:00:37
It’s a lifestyle.

Bruce Young 1:00:40
Yes, it is.

Bill Gasiamis 1:00:43
Yeah, I appreciate you reaching out and contacting me. Thank you so much for sharing your story. Just before we go, there was one question I wanted to ask you about the bacteria that causes stroke. Do they know the name of it? Is there a name that you recall?

Bruce Young 1:01:01
No, but I could probably find out for you, if you’d like.

Bill Gasiamis 1:01:05
Yeah, if it’s possible, if it’s a medical record about that and you know, it’d be just, I’m not sure, curious. I’m just curious to know what that is all about. That is such a bizarre way to have a stroke in that.

Bruce Young 1:01:21
Well, it is.

Bill Gasiamis 1:01:23
I’ve met some people who have had strokes for many different reasons and every version you can possibly imagine, but the dog bite, that’s definitely a first, I’ve never heard of that before.

Bruce Young 1:01:34
Well, my neurologist threw up his hands and says, that doesn’t happen.

Bill Gasiamis 1:01:39
Yeah, it’s just fascinating and shocking at the same time, you know.

Bruce Young 1:01:46
Yes.

Bill Gasiamis 1:01:48
Hey, Bruce, thanks so much for being on the podcast.

Bruce Young 1:01:51
Well, you’re most welcome.

Bill Gasiamis 1:01:53
Well, that brings us to the end of this inspiring episode with Bruce Young from his unexpected stroke caused by a dog bite to his journey of recovery and advocacy. Bruce’s story is a testament to resilience, adaptability and the power of community.

Bill Gasiamis 1:02:11
If today’s episode resonated with you, I’d love to hear from you. Please leave a comment, like and subscribe on YouTube, and if you’re listening on Spotify or iTunes, a five star rating or review would mean the world to me, your feedback helps others discover the podcast and join our incredible community. Remember to check out my book ‘The Unexpected Way That a Stroke Became The Best Thing That Happened, on Amazon or at recoveryafterstroke.com/book.

Bill Gasiamis 1:02:42
And if you’d like to support the podcast directly, you can do so at patreon.com/recoveryafterstroke. Thank you for being part of this journey. Your support and engagement, keep this podcast going strong. I’ll see you in the next episode.

Intro 1:02:59
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 1:03:29
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Intro 1:03:53
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Intro 1:04:20
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The post How a Dog Bite Led to Bruce Young’s Remarkable Stroke Recovery Journey appeared first on Recovery After Stroke.

Reflecting on a remarkable year for the Recovery After Stroke Podcast: 54 new episodes, over 257,000 YouTube views, 61,000 downloads, and countless inspiring stories of resilience and recovery. Here’s to growth, hope, and connection in the year ahead!

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Transcript:

Bill Gasiamis 0:00
Hello everyone. Happy New Year. As we begin a new year, I’m filled with immense gratitude and pride as I reflect on what we’ve achieved together through the Recovery After Stroke Podcast and community this past year has been truly remarkable, not just because of the numbers, but because of the incredible stories, connections and growth we’ve shared.

Bill Gasiamis 0:27
In 2024 alone, we released 54 new episodes, bringing our total to an impressive 334 episodes. Each one of those episodes represents a story of resilience, recovery, and hope, stories that continue to inspire not just me but 1000s of people worldwide.

Bill Gasiamis 0:51
On YouTube, the growth has been phenomenal. We’ve had 257,000 views this year alone, which is more than all the views from the previous 10 years combined. Lifetime, the channel has reached an incredible 522,000 views, proving just how many people are finding value in this content.

Bill Gasiamis 1:17
The podcast continues to grow as well, with 61,000 downloads across all podcast platforms this year, bringing our all time total to an amazing 268,806 downloads. That’s more than a quarter of a million listens from people in 90 countries so far. A powerful reminder of how far reaching and universal the message of recovery and post traumatic growth truly is.

Bill Gasiamis 1:51
Beyond the numbers. What makes this journey truly meaningful is the incredible community we’ve built together your support feedback and heartfelt messages remind me why this work matters and inspires me to keep going. This past year, we received 48 five-star reviews on Spotify, a testament to how much the podcast resonates with listeners.

Bill Gasiamis 2:16
On Amazon, the book has earned six five star reviews and 338 copies of the book have now been sold helping stroke survivors and their families navigate the path to recovery and rediscovery. Your words of encouragement truly mean the world to me. One email I received just a few days ago stood out. The email goes afternoon, Bill and family. I got my book. Thank you.

Bill Gasiamis 2:46
You helped me on my path of rediscovery and healing. I’ve jumped to one hurdle, and it opens up more new norm onwards and upwards. You have helped me learn about the new me. Happy New Year to you and your family. So it’s moments like these that underscore the purpose of everything I do, and it’s not just the book. Your responses on the YouTube channel have been equally heartwarming.

Bill Gasiamis 3:15
One comment from a stroke survivors daughter really struck me. Thanks. You are an answer to my prayers. I was looking for a channel like this, looking for hope for my Dad. Knowing that the content is providing hope and guidance, not just to survivors, but their loved ones, is a reminder of why this work is so important. To every person who left a review, sent a message or shared their story, thank you!

Bill Gasiamis 3:46
Your encouragement fuels this mission and shows that together, we are making a real impact. While every interview holds a special place in my heart, this past year, one episode stood out and sparked a lively and important conversation with the stroke recovery community. Episode 297 Etanercept for stroke recovery, Myth or Reality? With Andrew stops became the most popular episode of the year.

Bill Gasiamis 4:16
It opened up discussions about alternative therapies and the possibilities that they bring to stroke recovery. Seeing the community engage so deeply in this topic was truly a highlight. Another significant milestone for me this time was setting up a Patreon page to help cover the ongoing costs of producing this podcast. Now I encourage people to ask for help, but asking for help in this way was a big personal hurdle for me.

Bill Gasiamis 4:50
There was a lot of internal resistance to overcome. However, I realized that creating this space for support not only helps sustain the podcast, but. But also fosters a deeper sense of connection with those who value its content. The response has been humbling and affirming, showing me how much this podcast means to so many of you.

Bill Gasiamis 5:13
These moments have been a reminder that growth comes from stepping outside of our comfort zones, whether it’s sparking conversations that matter, or learning to ask for help, each step has been a move toward ensuring the Recovery After Stroke Podcast continues to be a resource for hope, knowledge, and community.

Bill Gasiamis 5:38
As this year begins, I want to take a moment to express my deepest gratitude to everyone who has played a role in making the Recovery After Stroke Podcast what it is today. First of all, to all my incredible guests, thank you for sharing your stories, your insights, and your vulnerability. Each of you has brought something unique and valuable to the community, and your willingness to open up has inspired so many people around the world.

Bill Gasiamis 6:07
To my listeners, your comments, kind words and engagement keep this podcast alive and thriving. Whether it’s a review, a message or simply tuning in each week, your support means everything to me, knowing that the podcast is making a difference in your lives gives me motivation to keep going. A special shout out goes to Lance Garcia David, my assistant in the Philippines, Lance is the real reason this podcast continues to run.

Bill Gasiamis 6:36
Without his incredible work behind the scenes, there’s no way I’d be able to release an episode a week. From creating transcripts to uploading episodes to every channel, Lance ensures this podcast reaches you seamlessly. Producing just one episode takes at least eight hours of work, and with my limited time, neurological fatigue, concentration challenges, and difficulty initiating tasks sometimes the reality is that many interviews might never be recorded, edited, or shared without his help.

Bill Gasiamis 7:11
Lance’s dedication, attention to detail, and consistency are what kept this podcast moving forward, and I’m deeply grateful for everything he does. As we look to the year ahead, I’m excited to share some of my aspirations, and goals for Recovery After Stroke and beyond. These goals are rooted in my passion for helping others navigate stroke recovery and my desire to continue growing alongside this incredible community.

Bill Gasiamis 7:40
First on the list is recording the audio version of my book The Unexpected Way That A Stroke Became The Best Thing That Happened. I know many of you prefer listening, and I’m eager to bring the book to life in this format. I’m also contemplating starting work on my next book, which will explore post traumatic growth. It will be a guide for recognizing when post traumatic growth is unfolding in your life, learning how to pursue it and applying it to create meaningful change.

Bill Gasiamis 8:12
While it will be relevant for all audiences, it will have a special resonance for stroke survivors. The podcast remains a central part of my vision, and I plan to continue recording episodes, working towards the ambitious goal of reaching 1000 episodes. This milestone feels bold and deeply motivating, and I think about the stories, insights, and hopes yet to be shared.

Bill Gasiamis 8:40
Another important goal is to raise additional funds to spend more time on all things Recovery After Stroke. This would allow me to transition away from my current job, which is becoming increasingly difficult due to the physical demands and daily aches and pains my body now experiences. By dedicating more time to this mission, I can better serve this community and expand the reach of the podcast.

Bill Gasiamis 9:06
I’d also love to connect with more stroke survivors in person next year, meeting people face to face and hearing their stories directly is always a humbling and inspiring experience, and it reminds me of the power of community in recovery. Lastly, I aim to finalize and deliver my keynote presentation on post-traumatic growth. This has been a work in progress, and I’m excited to deliver it as part of paid speaking engagements, spreading awareness about post-traumatic growth, and inspiring others to embrace its transformative potential.

Bill Gasiamis 9:42
As we welcome a new year, I want to thank each of you once again for being a part of this journey, whether you’ve been here from the beginning or just joined the community. Your presence, support, and encouragement mean everything to me. Here’s to another year of growth, resilience, and recovery together. Happy New Year to you and your loved ones, onwards and upwards!

The post 2024 in Review: Stroke Recovery Milestones and What’s Next for 2025 appeared first on Recovery After Stroke.

Embolic Stroke: What You Need to Know About Causes, Symptoms, and Recovery

Introduction

An embolic stroke is a medical emergency that requires immediate attention. Understanding what it is, why it happens, and how recovery works is crucial for anyone affected—whether as a survivor or a caregiver. This article will explore everything you need to know about embolic strokes, from causes and symptoms to treatment and recovery strategies.

What Is an Embolic Stroke?

An embolic stroke occurs when a blood clot or other debris forms elsewhere in the body—often in the heart—and travels to the brain, blocking blood flow. This type of ischemic stroke deprives the brain of oxygen and nutrients, causing brain cells to die within minutes.

The term “embolic” refers to the embolus, or traveling clot, which distinguishes this stroke type from others caused by clots forming directly in the brain.

Common Causes of Embolic Stroke

Understanding the root causes of an embolic stroke can help with prevention and management. Common causes include:

1. Atrial Fibrillation (AFib)
   Irregular heartbeats can lead to the formation of blood clots, which may travel to the brain.
2. Heart Valve Disorders
   Conditions like endocarditis or mechanical heart valves increase the risk of clots.
3. Carotid Artery Disease
   Plaque buildup in the neck arteries can dislodge and become an embolus.
4. Deep Vein Thrombosis (DVT)
   Though less common, clots from the legs can travel to the brain through a condition called paradoxical embolism.

Recognizing the Symptoms of an Embolic Stroke

Time is critical in treating a stroke. Recognizing the signs can save lives and reduce long-term damage. Common symptoms include:

• Sudden Weakness or Paralysis
  Particularly on one side of the body.
• Speech Difficulties
  Slurred speech or inability to find words.
• Facial Droop
  One side of the face may appear uneven or drooped.
• Severe Headache
  Often described as the worst headache of their life.
• Vision Problems
  Sudden loss of vision or double vision.

If you suspect an embolic stroke, remember the acronym BE FAST (Balance, Eyes, Face, Arms, Speech, Time) and seek emergency medical help immediately.

How Is an Embolic Stroke Diagnosed?

Medical professionals use a combination of tools to diagnose an embolic stroke:

1. CT or MRI Scans
   To identify blockages or damage in the brain.
2. Echocardiogram
   To check the heart for clots or irregularities.
3. Carotid Ultrasound
   To detect plaque buildup in the carotid arteries.
4. Blood Tests
   To rule out other conditions or check for clotting disorders.

Treatment for Embolic Stroke

The treatment plan depends on the severity and timing of the stroke. Common treatments include:

• Clot-Busting Medications (tPA)
  Administered within a few hours to dissolve the clot.
• Mechanical Thrombectomy
  A minimally invasive procedure to physically remove the clot.
• Anticoagulant Therapy
  Long-term medications like warfarin or DOACs to prevent future clots.
• Surgical Intervention
  Rarely, surgery may be needed to address the underlying cause, such as a blocked carotid artery.

Recovery After an Embolic Stroke

Recovery is a highly individualized process that depends on the location and severity of the stroke. Key elements of rehabilitation include:

1. Physical Therapy
   To regain mobility and strength.
2. Speech Therapy
   To address communication difficulties.
3. Occupational Therapy
   To relearn daily tasks and improve quality of life.
4. Mental Health Support
   Coping with the emotional toll of a stroke is just as important as physical recovery.
5. Lifestyle Changes
   Adopting a heart-healthy diet, quitting smoking, and exercising regularly can reduce the risk of future strokes.

Tips for Caregivers

Caregivers play a vital role in the recovery process. Here are some ways to provide effective support:

• Encourage therapy participation and celebrate small wins.
• Help manage medications and follow-up appointments.
• Create a safe home environment by reducing fall risks.
• Seek out support groups for emotional and practical advice.

Preventing an Embolic Stroke

Prevention strategies can significantly reduce the risk of an embolic stroke. These include:

• Managing Atrial Fibrillation
  Regular check-ups and medication adherence are crucial.
• Healthy Lifestyle Choices
  Focus on a balanced diet, regular exercise, and avoiding smoking.
• Monitoring Blood Pressure
  High blood pressure is a significant risk factor for strokes.
• Controlling Diabetes and Cholesterol
  Keeping these conditions in check can protect your blood vessels.

Final Thoughts

An embolic stroke can be life-altering, but with immediate treatment, proper rehabilitation, and lifestyle changes, many survivors go on to live fulfilling lives. Education and awareness are essential for both prevention and recovery.

If you or someone you know has experienced an embolic stroke, know that recovery is possible, and support is available through a combination of medical care, therapy, and community resources.

Embolic Stroke: What You Need to Know About Causes, Symptoms, and Recovery

Mark Vega shares his inspiring journey of resilience, recovery, and hope after an embolic stroke. A must-hear story for stroke survivors!

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Highlights:

00:00 Mark Vega’s Introduction and Initial Stroke Experience
04:08 Hospital Experience and Self-Discharge
12:07 Recovery and Adjustments
21:10 Training for the Los Angeles Marathon
28:44 Second Stroke and Its Impact
44:01 Ongoing Recovery and Future Goals
57:57 The Impact of Stroke on Professional Life
1:04:59 Preparation and Strategy for the 100-Kilometer Run
1:12:47 Challenges and Mental Resilience at 50 Kilometers
1:17:50 The Importance of Crewing and Support
1:19:30 Bill Gasiamis’s Experience with Tony Robbins and Fire Walking
1:25:18 Mark Vega’s Philosophy and Running Goals
1:28:46 The Role of Mindset in Recovery and Future Goals
1:30:31 Final Reflections and Encouragement
1:33:44 Advice for Stroke Survivors and Final Thoughts

Transcript:

Mark Vega’s Introduction and Initial Embolic Stroke Stroke Experience

Bill Gasiamis 0:00
Hello everyone and welcome to another inspiring episode of the recovery after stroke podcast. Before we dive into today’s conversation, I wanted to take a moment to thank you for your continued support. It’s because of this amazing community that I’m able to keep sharing stories resilience, hope and recovery. I would like to remind you also of my book The unexpected way that a stroke became the best thing that happened. It’s been empowering stroke survivors and caregivers with stories and practical steps towards growth and healing after stroke for 12 months now.

Bill Gasiamis 0:40
If you haven’t picked up your copy yet, you can find it on Amazon or a recoveryafterstroke.com/book. Now let’s talk about today’s guest. I’m thrilled to introduce you to Mark Vega, an embolic stroke survivor whose journey is nothing short of extraordinary. Mark faced his first stroke at age 51 and went on to navigate a second, more significant stroke, all while rebuilding his life and mindset. In this episode, Mark shares his powerful story of resilience, the lessons he learned about gratitude and determination and how he turned adversity into strength.

Bill Gasiamis 1:20
Let’s get started. Mark Vega, welcome to the podcast.

Mark Vega 1:27
Thank you, Bill, good to Good to see you and good to be seen, I suppose.

Bill Gasiamis 1:31
Indeed. Thank you, mate. Tell me a little bit about what happened to you.

Mark Vega 1:40
Active professional was 51 years old. High metabolism had had it for a long time. High metabolism active, very physically active and otherwise and one day I lost my I went to instruct a new intern in my office and found myself searching for words. Thought to myself, Man, I need a whole pot of coffee. Something’s wrong here, right? I just couldn’t have come up with words, I was trying to tell an intern to just simply add photographs to a big photo shoot we’d done over the weekend.

Mark Vega 2:21
And we had done to fix up some some homes at the time that we’re using, going to utilize solar power in Southern California. This is 2015 and that’s a simple enough set of instructions. You know, just take the photos and put them in the right folders, add them to the website, simple, easy, but after a few minutes of trying to describe to this young intern what I wanted him to do, I realized, okay, something’s not working here. So I asked my operations person to kind of take over. I said ‘I’ll I need a whole pot of coffee and I’ll be back.

Mark Vega 2:59
And then walked out the door and uttered words that I hadn’t uttered before. That was, I don’t know what’s going on, but I’m going to go straight to the doctor, and I’m not sure what words I use, but they understood I was leaving. So went to the doctor and have a full TED Talk version of this long story, you know, for some time, but the the version was, I went to the doctor, went to my internist right away. He didn’t know what was wrong, seemed everything would be okay, but I just missed my words, I wasn’t I took the fast test.

Mark Vega 3:37
My face was fine, my eyes were fine, my speech wasn’t slurry, and I could pick up my arms and so the traditional indicators for you might be having a stroke. We didn’t see so he said ‘Well, take this baby aspirin and I’ll figure out. We’ll line up an MRI sometime later today, or something, okay, by the time I get home, by the time I get home, my my wife had done some research and said ‘You had a stroke, I’m certain of it. I’m like ‘Oh, I didn’t have a stroke, he would have told me how to stroke.

Hospital Experience and Self-Discharge

Mark Vega 4:08
Said ‘Nah, we’re not sure. So I go home, and I get to the house, and she calls for an ambulance to take me to the hospital. I’m sitting out on a bench out in front of the of the in my front yard, and ambulance comes around, and the paramedics come in and says, where’s the where’s the patient? And I stood up in my front yard and looked to the side and realized ‘oh, that’s me, me, me, me, me, me, me, I’m the guy, I’m the guy. So I’m talking a mile a minute, because it seemed as though if all I had to tell them was like, my wife’s in the house, I need to go take me to the hospital.

Mark Vega 4:50
I think I had a stroke. But what I said was something like ‘You guys are great. In house, you know, my wife, I’m here to the go the hospital is like ‘Let’s go. So that’s what I told the paramedics. The paramedics were a little confused, you know, thinking I might have been on crack or something. I’m not sure. My wife comes out and said he had a stroke, but his doctors said he’ll get an MRI later. Just take him in. Okay, so we go in and go to the hospital and in Los Angeles, and have to wait a long time, a very long time.

Mark Vega 5:36
I’m on a on a gurney, and they do a little checking, but there’s no MRI. Nothing happens until late at night 9, 10 o’clock. The doctor had previously scheduled me to have an MRI at six or so. He canceled that because now I was checked in or I was at the hospital. In the emergency room, did the MRI, but they wouldn’t tell me the results. They checked me into the hospital and said they’re going to tell me in the morning. So I in the morning, a woman, nurse comes in and says ‘Okay, well, good news and bad news.

Mark Vega 6:07
The good news is doctors coming, but he can’t come till about 9:30 and I look at my watch, and it’s, I don’t know, eight in the morning. I’m like, okay, great. That’s, you know, an hour. And she said ‘No, 9:30 at night. What? I think this is insane Bill. I don’t never heard of such a thing, and all I know for sure is my words are still disappearing, like I don’t know what is happening. I feel fine, but I’m speaking in this truncated manner because I can. It’s like The Matrix when those little green numbers go right. I was imagining diction, words and addiction, I open up the pages just disappearing.

Mark Vega 6:47
So that wasn’t acceptable to me. I didn’t know what I was going to do, but this seemed crazy, right? So little bit like Liam Neeson and some really cool movie. I stand up out of bed and I take off my hospital gown, and I literally rip out the EKG, rip out all the monitors, I put my clothes on, and I just storm out of the hospital. I’m on the pit floor or something, and I just walk past everybody. I’m consciously trying to make eye contact with people so somebody can tell me stop, you know, help.

Mark Vega 7:17
But I’m just kind of frustrated, I leave and I take the car, I get out, I start walking down the streets on set Boulevard. So clearly I’m not exactly aware of what exactly is happening, right? But I’m walking. So I call my wife, and I said ‘I left the hospital because they don’t know what they’re doing. She’s like ‘Wait, what? Where are you? What did you do? I left the hospital. They don’t let you leave. I said ‘Well, I left, I gotta go. I think I gotta go. And she’s now ‘Call your doctor, do something, call the doctor right away. She calls the hospital.

Mark Vega 7:49
Meanwhile, looks for me, and the hospital says, well, we can’t find him, but she can’t find him. What happened? Where is he? What’s the deal? So she’s super upset. Meanwhile, my Internist, I can’t even on the phone, I can’t even tell I did a message and says, if it’s an emergency, plus press one. So I look at my phone, and I hang up, and I call my wife back. I’m like, is this an emergency? Do I press one right now? And she said ‘Yeah, do that. So I call back the doctor. He gets on the phone. He’s like, go directly to Cedar Sinai. Here’s a guy I’m going to connect you with.

Mark Vega 8:21
Don’t just that hospital, terrible, just go to Cedars. So I go into cedars and but I don’t go to the hospital. I go right to the doctor’s office, into the neurologist office. I bang on the door, walk in and I say ‘Hey, I’m a new guy, but I just had this thing. I just walked out of the hospital. I’m blah blah, blah, blah, blah at this point, Bill, they also know I’m a lawyer, because I must have said that I identify myself. So all we know is this, this neurologist who’s one of the leaders of the organization, of the group, right? I got this.

Mark Vega 8:49
He’s got this crazy, quote, unquote patient who says he’s a quote, unquote lawyer, who says he just walked out of the hospital and he thinks he’s had a stroke. He doesn’t know this is a candid camera episode or some other kind of reality prank show. He doesn’t know for sure, but he lets me in Doctor. Hey, I’m only talking past because I’m losing my words and I don’t know what to do. I don’t know exactly if I’m losing words or not, but it feels like I’m losing my words. He’s like, whoa, whoa, whoa, whoa, okay, okay, okay. But he doesn’t trust anything, right?

Mark Vega 9:17
Well, right about on cue, bing, my wife calls my phone, so I’m able to say ‘Here, talk to her, and my the doctor’s like ‘Oh, this is bizarre. But of course, you know, we meet all kinds, don’t we? Mean all kinds. So it picks up the phone. Yes, doctor is true. He just walked out of, out of Presbyterian Hollywood, Presbyterian Hospital, and they tried to check him in last night. They’ve got results, but they won’t give him the results. So the doctor said ‘Okay, hang on. So my wife had the guy’s phone number somehow, I don’t even know how the my new neurologist calls.

Mark Vega 9:51
The guy says, Hey, this is Doctor blah, blah, blah at Cedars. My patient Mark Vega is right in front of me. The guy, did you do the test? Guy says ‘Yes, my new doctor says, go to Line 46 and 47 or something like that. Read off the data. So he reads off the data. Whatever that was. I don’t understand. It didn’t matter. But it felt like this guy was finally listening, and I finally had somebody pay attention to what I was doing.

Mark Vega 10:14
And I was kind of for just the first moment, I started to think maybe I don’t have to speak even as quickly as I’m speaking to you right now, Bill, because finally, maybe those words will stop disappearing. But I don’t know that for sure, but I think that’s possible, right?

Bill Gasiamis 10:26
So let’s take a quick pause here before we dive back into Mark’s incredible journey and insights about embolic stroke recovery. I want to talk about how you can help support the podcast. This podcast has been a labor of love from the start, and I’ve been covering the costs myself to bring these episodes to you, but to keep it going and achieve my goal of reaching 1000 episodes, I would like your help. If these episodes have made you feel less alone or glad that you found the show. You can make a difference by helping ensure that future stroke survivors have the same experience.

Bill Gasiamis 11:06
Your support on Patreon makes it possible to continue recording and sharing stories that remind stroke survivors they’re never alone on this journey. Please consider becoming a Patreon today. Every contribution helps me keep creating content that connects, educates and inspires. Visit patreon.com/recoveryafterstroke to learn more. Now let’s get back to Mark Vega and hear more about his experience and the lessons he’s learned along the way.

Mark Vega 11:37
He gets the data, and he looks at me and my wife’s on the cell phone right in the ring. He looks at me, he says ‘Well, you definitely had a stroke, you might have had a major stroke, and I’m so glad that your doctor gave me that baby aspirin, because I can’t even tell you, we wouldn’t be having this conversation. So I’m going to get you checked in real quick, and we’re going to take care of blah, blah, blah, blah, blah, blah, blah, good. I get checked in. Ultimately, I’m there for about a week, right intensive care for a minute, and then they transfer me to the stroke Ward.

Embolic Stroke Recovery and Adjustments

Mark Vega 12:07
Ischemic stroke on one side of my brain. They determine it is ultimately, though, diagnosis, prognosis is embolic stroke of undetermined source, the all elusive, ESUS. Now they say Bill that maybe 3% of the people of the 1000s of have strokes every year are captured in that 3% range, right? So that means every year that’s from could be 1500 to a couple 1000 people like me, like you, like people every year, like okay, what that means is they don’t really know what caused it, they don’t know what to how to prevent it. They can’t guarantee that it won’t happen again.

Mark Vega 12:44
Those things we know for sure, none of those are very self satisfying, right? We’re not very satisfied with that at all. However, I’m alive, right? And within a couple days, the words stopped disappearing. I was able to speak more deliberately. I could always speak deliberately and slower Bill, but I just was concerned. It was the matrix, I’m like, I better.

Bill Gasiamis 13:08
Get the words out while you can.

Mark Vega 13:11
Yeah, I get paid. I get paid to speak, and the words are important to me. And yes, I can write, write, write, but speaking is important, right? So after a few days, I sensed that the words leakage had stopped, so I didn’t have I didn’t get back things, but it just felt like the the matrix stopped right, so the the letters were no longer falling off the page. But at that time, I flipped through the encyclopedia or the dictionary, and still there were big spots of white spots on the on the dictionary, like, well, I don’t know what was there. It looks like it was I because it’s in alphabetical order.

Mark Vega 13:45
In my mind, I could, well, I can imagine, imagine that some pieces, I could tell what was right before it and what was right after it. And later on, my confirmation bias, or my own research Bill let me know that, in fact, that’s kind of how the brain rewires itself. Anyway. If there is holes on the page right, we the synapses fire above and below and all around, and so all of a sudden, the neural networks kind of reconnect, right?

Mark Vega 14:08
Doesn’t happen right away, and I didn’t know anything about this at the time was happening? Obviously, we all have to learn through our own lived experiences, but that seems to be what was happening. So that’s just the first one. Can I keep telling with going to my story? I don’t want to stop. I don’t want to if you’re falling asleep, you’re bored about it, I want to tell you because you’ve heard a lot of stroke stories, man.

Bill Gasiamis 14:30
I had one delivered quite like this. Man, keep going.

Mark Vega 14:36
Listen, I’m 51 years old. The doctor’s like, well, that’s, that’s, you’re kind of young for this kind of a stroke to happen doesn’t make sense. So it wasn’t hemorrhagic, there wasn’t some event that happened that we could identify, like blood vessel burst or something was nothing like that. And also didn’t have any kind of history of anything, and in my family that we as far as we could tell, and all the research and study that we done, right? So. Okay, well, I’m alive. I’m grateful, but I don’t know if you did the same.

Mark Vega 15:08
I bet it is because I also had a business at that time and I and it’s the same business I now have today, right? Just like you still on the grind, still hustling, but when this first, when the first stroke happened all of a sudden, or not all of a sudden. But my instincts were to make my footprint small, because I still had to keep the business going and support my family and right, but I had to really, I just kind of like things.

Mark Vega 15:33
I just let things get small, drink a little or intentionally did, so the number of client personnel I had it shrunk, and the number of active outreach and collaborations and side hustles and other jobs and other work things I were doing, I just kind of let them go on their own. I just couldn’t I, and there was no doctor told me to do this. Nobody in my life was saying, keep doing more Mark, and nobody was really saying you shouldn’t do anything, because you know why? Just if this is your experience, because nobody knows, nobody really knows.

Mark Vega 16:07
You don’t know about stroke when they realize it’s not a heart attack and it’s just stroke, when the moment people realize it’s your brain, in my experience, anyway, they want to be supportive, they want to be helpful, but in the back of their head, they’re kind of like, if they couldn’t see you react, your reaction. I imagine all my friends going, what his brain? But they don’t say that. But your brain, oh my god, that’s so that’s so messed up. Oh god, I guess you can’t do anything for the rest of your life.

Mark Vega 16:39
You know, in your head, in my head, I was like, I didn’t want my clients to have that reaction, didn’t want my family to have that reaction, didn’t want my friends and neighbors to have that reaction. So I just made my footprint small, and I had a core group of people who were family members and some important clients and people who had known me all along, and you know, their reaction initially, some of those clients, my closest clients, who are still clients today, their initial reaction was ‘Thank God at least when they now, you’re not, not going to talk as much as that.

Mark Vega 17:10
That’s kind of an upside for me, they would say, right. So, we took that in stride and really kept a good smile on our faces. And I thought I had to in the process of me making my footprint small, my business small, like I didn’t want to make mistakes, right? I didn’t want to do anything that was going to mess up the business. But at the same time, it’s possible, though we did 8000 tests, it’s possible that stress and other levels might have contributed to some of this, right?

Mark Vega 17:41
You never really determine exactly, but in order to prevent that, we just get rid of anything that is extraneous, right? That’s what we try to do. One thing I hadn’t done, though, and my neurologist was suggesting this, as long as the cardiologist too, I used to run when I was much younger, but I hadn’t done so for years because my knees got I’m a US Army veteran, and I hurt my knees, not in active duty, not in more time at all, but just I was, I was deployed in South Korea, and I hurt both my knees and had surgeries.

Mark Vega 18:11
And so, okay, my running days might have been over, maybe, right, so, but the doctors were like ‘Mark, you should, you should start, you know, working out again, but not like with lifting weights, necessarily. Why don’t you just start walking? And I thought walking, walking, me walk, that I felt like I’d poke pencils in my eyes. No, I’m not gonna. I’m not a walker. What do you mean in a mall? I’m a young guy. I’m like, what I can’t that’s not the image I need or want, and I don’t see myself that way, right? And they laughed, and they said, okay, there.

Mark Vega 18:43
Okay, hot shot, well, what do you what do you think? Am I? Well, can I? Can I run? And he’s like, Well, he’s your card, and you got I’m like, I get it. I had a cardiologist at that time, not because I had a heart attack, but because, remember, we in embolic stroke of undetermined source. We don’t really know what causes stroke, so the neurologist and cardiologist and my internist, like I had a little team now, doctors scratching their head, figuring, I don’t know, you’re kind of an anomaly there.

Mark Vega 19:07
Remember the first time I saw you? You busted down my door and started talking a mile a minute, telling me you just walked out of a hospital as my neurologist, right? And he said ‘So remember that made an impression on me. So part of the energy and the vibe and exactly who you are. You’re still that guy, Mr. Vega, you’re still that guy. I’m like, well, good, good. So even if that’s the you know, first impression of you to me, doctor, neurologist, I’m okay with that. So can I run? He says, Well, you’ll go slow. You’ll figure it out. But, yeah, go slow.

Mark Vega 19:37
So Bill, that’s, that’s what happened after many years, I decided to, I was going to try to run. And I thought, what better way? Because it used to run, what better way? Like, I’d never run a marathon. Like, wow, how about, how about if I run a marathon? Can I do that? He’s like, Well, of course, you can do anything you want. Okay, I’m going to try it. So this is stroke. Is June, 2015 first one by August, 2015 I’m ready to, like mobile. I ready to kind of get some real exercise, I’m ready to do something, right? I gotta do something. And I still have a small footprint.

Mark Vega 20:16
From a business perspective, I don’t know if you did this, Bill. I saw some of your recovery photos when you were like, trying to get ambulatory again, I felt that the one thing I could control was my movement, my body movement. And I’ve now, since then, have come across a lot of stroke survivors that have talked to all different types of stroke survivors and many different modalities, many different levels of Ambulatory abilities, et cetera, et cetera, right?

Mark Vega 20:40
And so I was really grateful, because at the time, my brain, my stroke, just impacted in such a specific element of impact that I was grateful for everything else, right? So running made sense to me, and I had run for a long time. And at the time, I’m 51 that’s not old, but it certainly wasn’t that young either, right? So I’m not going to be, I’m not going to be running races to win races, but just the idea of running in the first instance like that should be enough, right? That should be good.

Training for the Los Angeles Marathon

Mark Vega 21:10
So I do it. I start to train, and I see the Los Angeles marathon. 2016 is on Valentine’s Day. 2016 february 14. Oh, right, come on, that’s an aspirational thing. I’m in Los Angeles. Happens, I have a LA Marathon in a couple of months. I’m there, man, I’m in it. I’m going to try. I’m going to do it. So I get a coach, and I go online, and I figure out what I’m supposed to do I’m not supposed to do, and and I start. And it took a long time to get going, because at first, initially, I guess because I was monitoring my heart rate, I had to actually walk.

Mark Vega 21:43
I had to walk enough so that I could start to walk faster so my heart wouldn’t go crazy, right? So I started to train and the real and really embrace the idea that we’re training. I was in the US military, in the army, and we ran road guard. I ran all kinds of exercises, but that’s a very different scenario of training that you’re training, trying to learn how to cooperate with 125 people all moving in the same direction, very different from just going out there for your own health and getting out and running. So I run, I run. I do all the programs on January 10.

Mark Vega 22:17
So listen, almost a month away from the marathon bill, I feel so good. My physical footprint, my for my business hasn’t expanded, because I’m still really questioning, because it just had happened, right? I’m just grateful that I didn’t lose clients, and you know, but I just didn’t want to pretend like I knew more than I knew about these strokes, right? With very leery. Didn’t want to talk to much anybody to say this happened or that happen, and certainly, as a lawyer, I discovered this, there’s a lot of lawyers who are kind of closeted. They’re quiet about ever having a stroke.

Mark Vega 22:49
Why? Because they’re lawyers. Yeah, I tell the world that their brain had some kind of anomaly, but luckily, you and I can tell them, and you’ve told the world a lot, you inspire people, y ou communicate well with them. But really, the brain is so fascinating that it’s possible to injure your brain so significantly that it takes years for that brain to start to come back, indeed. But for the vast majority of brain injuries, that’s not true. We had extra brain we just not right? So you just gotta give the time chance and time to rewire the little black skid marks, right?

Mark Vega 23:22
So the for that stroke had us, you know, skid mark over my ear. If you look in the MRI like, oh, there it is. It doesn’t go away. It doesn’t get better. It doesn’t become not black. But the wiring synapses, everything just rewires around it. No problem, right? I like that. So it’s a month before the, the the LA Marathon, right? Valentine’s Day, 2016 Are you excited? I’m so excited, just reliving it. It’s so fun. A month before, I don’t know if you run it all or do training, but you run a marathon for a long distance run, right?

Mark Vega 23:53
Usually about a couple of weeks, and sometimes a month before you start what’s called a taper. Now you still have to exercise with the same amount of intensity, but for a few weeks before the race, you you reduce the quantity of training. So you might run 20 miles, and then you’re going to start, then you’re going to go, you know, to 10 miles and eight miles and six miles and three miles. While you get there, though you’re still not You’re not slowing down the intensity, but the quantity of training, you slow down.

Mark Vega 24:23
So a month before my 26.2 mile, first marathon ever, in the history of ever, I’m going to be running on Valentine’s Day or eight story, in my mind, I’m going to do it. I will have done it. Bill, I tackled it. I’m going to do it. A month before that, I do this long run, about 20 miles, and feeling great. Never felt so good, really, physically and mentally, just all good. And I was on a, this was a that was a long run on a Saturday, next day, on Sunday, January 11, 2016 I’m fixing myself some lunch, having a salad, somewhere on my lunch counter, kitchen counter.

Mark Vega 25:03
And I reached down to pick up a mug, pick up a cup, and like this, I can do it this way, no problem. But then I reached to get this cup on the counter, and I just knocked it over, like on the floor. Luckily, there’s no water in it. Like, okay, what? I don’t even notice. I just knocked on the floor, and I bent down to pick it up and and I and I bent down to pick it up, and I I see my I see now I’m blur my background from it. I see my hands. I reach down to pick up the cup, and my hands are like this on the floor. So I kneel down on the floor, and I’m still in this moment.

Mark Vega 25:39
In that moment, I’m still not realizing what I’m doing. I mean, I don’t realize that this is the things I’m actually going like this. I’m trying to get the cup, and I say to my daughter, who’s in the house, the house is filled with people. I don’t know why, but anyway, there was it was, right? He yells, my daughter, Hey, David, can you come in here? Help me? I just dropped the cup, right? But she doesn’t hear me say that, my daughter hears me say, and she she comes in the she comes in the kitchen.

Mark Vega 26:11
She’s like ‘Dad, you are such a goof. And she walks out, you know, with her bone in her hand. Meanwhile, I’m on the floor. I knelt down, and the next thing I realized, Bill, I can’t stand up. So not only can, I can’t pick up the cup, but I’m kneeling on the floor. Now, at this moment, I still don’t know that anything’s happening. I just know I just doesn’t, I can’t pick up the cup, and my wife comes in the she comes sliding into the frame in the doorway, right when you’re in the kitchen, and she’s got her phone on her ear, and so she slides into frame with her phone up into her ear.

Mark Vega 26:48
It’s almost like Tom Cruise when she he slides into the frame of that movie, Risky Business when he had a own brush, of a hairbrush, and like he’s going to sing like a microphone, she slides in the frame with her thing with the phone in her ear, and she runs toward me onto the floor and says, Mark, Mark, shut up, shut up. You’re gonna scare everybody. And I’m like, I just dropped the cup. What are you talking about? But I don’t say that. I say she’s like, Shut up. Don’t see any work like what she said, Mark, you had another stroke. And I’m like, you didn’t have a stroke.

Mark Vega 27:30
I dropped the glass. I can’t pick up the glass, but she hears me, so she freaks out. She cups. She puts her horn over and like so violent for such a just picking up a cup I should have covers your face. She grabs under my arm. She says, come. She says to my yells to my daughter, Hey, baby, how many come in here? I gotta help your dad for a second. So she comes in, and they get under my arm, and they sit me on the sit me on the chair. And again, I’m like ‘fI just dropped a cup, and both of them hear me say, but bizarre.

Mark Vega 28:09
So I put my head my hands for a second, put my hand on the table. With just a couple seconds, right, happened? Next thing I know in that, within those three seconds, I swear, paramedics are busting through my door like full gear, Fireman with full gear like in front and I’m thinking, was this a setup? Because that just happened four seconds ago. What is going on comes in through the front door. Mr. Bank, we understand you. We think you had another stroke, and understand you had a stroke six months ago. But I’m like, I didn’t have a stroke, I’m fine. I just dropped the glass.

Second Stroke and Its Impact

Mark Vega 28:44
And then the paramedics hear me say my explanation, and they’re like ‘Oh my god. So I’m looking at their eyeballs. I’m looking at their reaction Bill just like yours, and they’re looking at me like their their reaction is, you know, like this, they’re like, and like, in my mind, I’m like, don’t talk. What are they? What’s What do you guys? What’s going on, man, what is going on? So I go to stand up, and they’re like, they put my hand, which I just sit there, Mr. Vega, just hang on.

Mark Vega 29:16
It’s like, okay. Calls and he says, Mr. Vega, against medical advice, you’re going to send me away, but you have to tell me to go away, because it’s against medical advice. I’m telling you, we need to take you to hospital, you had no stroke. I didn’t have a stroke anyway. Stand up, they can’t stop me. But this point, I stand up, and I go over to the counter and I pick up a Kleenex. I feel like I gotta blow my nose for someone I pick up, blow my nose. And when I do that, I can’t I like this, blowing my nose to your face, watching me just like I’m at I still don’t know anything’s going on.

Mark Vega 29:51
I don’t even see myself. Like, blow my nose. And when that happens, I did sense, like, a little bit of clarity in my head, like ‘Oh, liike, when you go above. But you know, when you’re a flight and your ears start popping when you’re high above and a high elevation felt like that. But next thing I know, paramedics got a phone exam, Mr. Vega, we’ve got the nurse on from some cedars. she, we believe he spoke with you six months ago. So I take the phone. I’m like, this. I’m ‘That’s me. Hello, huh? He’s like ‘Mr. Vega, we think this is Joe, Joe, Joe, blah, blah, blah.

Mark Vega 30:22
We I saw you six months ago. You believe you had your first stroke. So I believe we believe you’ve had another stroke. Now I’m against medical device. You can tell these paramedics go away, but Miss vague, I think you had a stroke. I think you got to come see me. So for the first time ever, Bill as I got the phone in my ear, I see the paramedic, I see my family’s concerned faces for the first time ever, I realized my hands dangling on a butt was ridiculous.

Mark Vega 30:48
But I realized everything happened, and I say something like ‘Oh my gosh, I’m so sorry, everybody, I’m so sorry. Thank you. Thank you. Let’s go, so for the first time I hear that language I just spoke, and I can hear that it’s messed up, but I can understand what I’m saying. And at that moment, they could understand it too. So they got me in the they got took me to cedars, went in there quickly and ending, wrapping up, ending this story. So on the other side of my brain, the stroke twice as big as the first one other side of my brain.

Mark Vega 31:25
First one, there’s a skid mark about the width of my pinky. Second one’s a skid mark about the width of my thumb on the by the other ear. And same thing, ischemic stroke, embolic stroke, undetermined source. They still don’t know what it is, but I’ll tell you this bill, and we’re almost to the end of the story for now, at least the story of the stroke itself. They added another doctor for me, this time a blood guy. So now I get a whole team, like I’ve never. Had never had a team of what this is, insane.

Mark Vega 31:55
Anyway, I had turned 52, so now I’m 52 and, remember, it’s, you know, it’s like a month, this would be right before the marathon. So I feel good. So I recovered that there was no word loss, and again, the artifacts were minimal. They existed, but at the time, I didn’t sense any of that, but the neurologist grabs me on the shoulder ‘So Mr. Vega, listen to me, had you not been exercising? Had you not been working and really maintaining an observation of your both your metabolism, your health, your heart, both your cardio and your steady state activities.

Mark Vega 32:37
That second stroke, it would have killed you. He had his hand on your eyes ‘Oh, okay. Thank you. Thank you. Thank you. And he shakes me, Bill. He shakes me ‘No. Mr. Vega, if you had not been exercising the way you had been exercising and that second stroke hit, you would be dead.

Mark Vega 33:11
First time ever in the history of ever I shut up, I could hear a pin drop, because for the first time ever, Bill, I heard him, I heard him, I heard what he said, I heard it, and I couldn’t I just I heard it. There was no doubt about it, I heard what he said, and I have to listen to it right now. I’m going to stop because this is crazy, I’ve gone been going on for too long, but I want to show you something I did start to recover, and by May of 2016 my everybody, the doctor, I’m like ‘Yeah, you can start training again. You can run again, if you like, you’re ready, we’re ready for that. Okay. Can I run a marathon? Sure.

Mark Vega 33:57
When can I run a marathon? I don’t know. What do you mean? I said no, when I got a train, so I can’t, like ‘When can I can I do it in October? Like the guy, nah, that’s not October. Can I do one in November? He says ‘Yeah, I think you know about November. So at that moment, first time ever in the history of ever, I looked up at the phone, like, November marathons, and I see, oh my god, New York feels like the biggest marathon in the world. I never run a marathon yet. Why not New York? I said ‘Can I do New York? And he says ‘Okay, yeah, sure, you can do New York.

Mark Vega 34:25
I’m like, Okay, I’m doing New York. So I trained and trained and trained. Was very happy to do that, and happily by November 6 to 2016 took me a long time, but I ran across that finish line. And it was nobody around, just me. But I ran across that finish line, Bill, and I sobbed. I was so satisfied, so happy, that it all came together. And nothing, it didn’t, you know, and clearly it didn’t kill me, and then I’ll just do one quick little display, if you can see that. So I went from running no matter, marathons at all, to 2016 I ran the New York City Marathon.

Mark Vega 35:03
I have since run the New York City Marathon twice. I’ve run la a couple of times. I’ve also run ultra marathons, and most recently, just last weekend, I ran a trail marathon that I really, really love. So I’ve got a 50k on the schedule. First time ever I’m going to run a 50 miler, and I’d like to do 100k, so when I turn 62 I want to run 62 miles, and on my bucket list is a 100 miler. Now that is really my stroke story.

Mark Vega 35:37
It’s all about the strokes, and none of this would be happening had I had each of those steps not been taken? So I, on one hand, Bill, I really apologize for taking up so much time to tell the story, but on the other, I appreciate that it feels like this platform more than any other platform in the history of platforms, right? This is the place you get to tell the stories, right?

Bill Gasiamis 35:59
Absolutely, it is really important to set the scene and to hear your energy and the way you go about things, because without the whole thing comes together, it makes sort of, it paints a perfect picture of who you are, like, what, who they’re dealing with, what kind of a person they’re dealing with. When you turn up to a hospital, there’s so many familiar parts of that story to my story. You know, I go to the hospital the third time I tell them I’m having a stroke, just put me into the MRI machine. Don’t worry about all the paperwork, don’t do any of that stuff, right?

Bill Gasiamis 36:36
You know, shrinking the business down and just kind of keeping it just skeleton staff just sort of ticking over a couple of important clients, helping me just cover the costs, pay a few of the bills, just keep me active, keep the brain ticking over. You know that’s familiar, being in really good health afterwards and just feeling great and then starting to exercise and riding bikes and all that kind of stuff.

Bill Gasiamis 37:04
And then the next one happens. You know, the whole thing sounds familiar? That the part that I want to understand is, what kind of a guy are you with regards to your probably been, you’ve been in dangerous combat zones, I imagine, or perhaps you’ve been in dangerous combat zones, had you as a Marine?

Mark Vega 37:33
No, I served the US, I mean, during the Cold War. So I was in South Korea for during the Cold War, was in early 80s, and so there was no active theater of engagements, except for Lebanon. There was a small one and Grenada. So there was no active theater of war at the time. But you woke up, you trained, you ran in PT every day, so you’re a constant state of readiness. But very different from many of my colleagues and veteran friends who have PTSD and significant PTSD. So I had the great fortune of not suffering through any PTSD with respect to separation or involvement in the military.

Bill Gasiamis 38:10
Yeah. And I imagine at that age, anyway, you’re not thinking about the possibility that you’re you’re going to die. You’re thinking, you know, you’re bulletproof. Mostly at that age, I imagine, to an extent, I know what what you’re doing. Yeah, you’re participating in but you’re not expecting it to ever happen to you, but at 51 had you ever considered this thing that happened to you as a serious health issue, and that, you know, because I did it 37 the first time.

Bill Gasiamis 38:37
I kind of thought I might not be around in six months. Like actually thought that, and it sunk in. You know, did you ever have that thought?

Mark Vega 38:44
I love the question. But the reason it’s so good is because you’ve had multiple strokes, and I have a good friend who I will introduce one time. His brand, he is Sean Anton is his name, and his brand is the stroke hacker.

Bill Gasiamis 38:44
Oh yeah.

Mark Vega 38:44
And he got choked out in an MMA, accident, 19, two down, 13, I think, and so had one stroke, but it really is debilitating. His left sides all messed up, still to this day, and he practices. He’s really a good human being, he had one. So we were, we knew each other long before then, but didn’t. Then we fell out of touch, and then after I had my strokes, I realized I got back in touch with them, and realized he had a stroke.

Mark Vega 39:27
So now the joke is, though, because I had two and he’s had one, so every time I see him, he’s like ‘Well, you had two, and he’s Yeah, so here’s how about this Bill, because we gotta keep it light, right? So I asked Sean that if I for some reason, if I stroke out at the third stroke, and I’m gone and you’re still alive, Sean, I want you to go up to I want you to present when I die. I want you to go up to the podium and I want you to say ‘Mark always said that no good joke starts with. Well, after my third major stroke.

Mark Vega 40:00
But here you are, you’re living proof, you are a third. You have three, I can’t believe it. So I love that. I love the question, because when, at what point in our lives do we, you know, think on existential elements of our lives, right? When do we say we’ve been we’ve had enough, and are we ready to go or never want to go right? So at 51, I can proudly say, after that first stroke, that it was in my mind, it was an anomaly. I don’t know what it was. The fact that medical science couldn’t tell me what it was. It was going to happen again. I’m like ‘Well, okay, I changed everything, though.

Mark Vega 40:38
I changed my my diet. I mean, I already been at high metabolism, and I’ve already done a lot of detoxing and changing diets, just for one way or another. So I’m always pretty active. Who you see right now is this guy, right? I’ve kind of always been that guy, but I took it more serious in that, well, thank God I’m alive. I would don’t want to leave. I had young kids. I don’t want obviously, I’m so grateful that I’m still here, and so I did think, man, I want to do everything I can to keep just doing things right, I don’t want to mess it up.

Mark Vega 41:13
And that would include like, training running, like, you know, it’s like, formally, when you commit to a training schedule, when a with a marathon or a race or other types of athletic events too, but because I had a an event, you know, I could keep my promises to myself. And I don’t know about you, but both in business and in life, when I do that, I’m going to be I’m going to be okay, because then I can trust the training. I’ve made promises to myself, no matter what happens then out in the universe, at least I made, I kept the promises to myself. I kept showing up, I kept bringing it right?

Mark Vega 41:46
So I’d have to say that was kind of my attitude during after the first one, but after, I trained for that marathon, and the other thing the blood doctor told me is, like getting there’s no way you’re running this marathon. You’re not running at all. We gotta figure this out, remember what? It killed you? No, no, Mister Vega, you would be dead. So after that conversation, I realized, that’s when I realized, Bill, okay, I’ve gotta look at this differently. I can’t I didn’t think, and I think this is the point of your question.

Mark Vega 42:17
I didn’t think at any moment that I was cavalier about how things happen, or what’s going on in my life, or how I treated the stroke, I never did, but after the second one, I realized, okay, I don’t know enough about this. I don’t know what this is, and it was not very comforting my friend to have a team of doctors to tell me right? First words out of the mouth, well, we don’t, you know. We gotta learn more about this. I’m like, what you don’t know either. Like, you know, it’s enough that I don’t know. But somebody should, somebody should know, right?

Mark Vega 42:54
Anyway, so that was my that was my sense of things that once after the second one happened, then everything I did in my life was seen through the filters of both of those strokes. So I have the chance like this time to give people talk to you this, tell you the story. If you tell the story of anyone, it’s fun, and I can talk about it’s interesting, but no, for me, it was the impact of having one unexpectedly training and doing everything I could to just be proud of myself that I survived one then somehow, was it something I did that brought on the second stroke.

Mark Vega 43:29
And as the blood doctor was like, no, if you wouldn’t have been training, you’d be dead. That’s how big the second one was, but because you are training, you’re alive, and we’re still trying to figure that out, and I wish I could they all we did. I did so many tests. I don’t know if you did this after more strokes, after the second one, I had more doctors, and I have read more tests were run on my system than anything, because then we had data. We had data from the first stroke, exactly what protocol we were using to deal with the first stroke, including my own training and all that kind of stuff.

Ongoing Recovery and Future Goals

Mark Vega 44:01
But my nutrition, diet, everything. And then after the second one, like ‘Okay, now we have more data. What is going on and to this day, though. So that was 2016 January. 2016 to this day, we are many, many miles away. And after the first year and second year, by the fifth year anniversary, I told myself, Bill ‘I’m done, I don’t want to keep talking about the strokes, I’m done with it. I’m over, right, but not true.

Mark Vega 44:28
And as I’ve listened to many of your guests and many of your YouTube videos and some of the podcasts, like, yeah, sometimes this, this is just one thing that happened to us in our life, just like my army service. It didn’t last for a long time with only a handful of years, but it was very real, so no need to delete it from my life resume, just like these jokes. No reason to do that, and then occasionally it’ll happen, even if I’m on a podcast or I’m on a meeting or something. Guess what? Occasionally a word will disappear.

Mark Vega 44:58
Now I know. I’m older now, I’m 61 so I know everyone’s ‘Oh yeah, we all forget words. Well, don’t tell anybody. But every once in a while, one of those words is not here, and I’ll guarantee you, Bill, it’s an artifact. It is an artifact of that first stroke. I know it because I look up in my mental image of that dictionary, and so the white spots are still there. Remember, there are still there.

Mark Vega 45:25
The neural network was able to rewire everything, and I’m fine and fully functional and better than ever, probably, but I’m telling you, there’s indelible marks on our brain, and we can understand and appreciate but we can’t ever fix we don’t ever you can’t get rid of it. You can work around it, right? Can’t get rid of it. Yeah, that’s a great that sound. Does that ring true for you? Some of that ring true for you?

Bill Gasiamis 45:53
It sure does. Man, that’s a great answer, because so for me, the first time again, they didn’t know what caused it this. These things happen every every so often. No big deal. Go back to work, try and get to business as usual, although they tell you not to go against doctors orders. The second one was six weeks later, and then it’s like ‘Wow. Okay, this thing hasn’t gone away. It hasn’t settled down. It isn’t the worst case scenario. It isn’t the the most unlikely scenario, the one that is going to sometimes they settle down on their own.

Bill Gasiamis 46:26
They stop bleeding. This one is still bleeding. Okay. Now all my cognition is gone, you know, my ability to type an email, talk, start, finish, send. This is all gone. I feel like I’m, you know, living in some kind of like a a mushroom trip. Most of the time, things are just all over the place. You know, for months, many, many.

Mark Vega 46:45
How long did that last? How long was that after the second one?

Bill Gasiamis 46:48
Look, it probably lasted about five or six months. Yeah, it’s just slightly different plane in and out. And sometimes I had clarity, and sometimes I was just so zoned out, like was just ridiculous. And what was difficult about it was it was happening when I was unex when I wasn’t expecting it. So it was kind of catching me off guard. And it wasn’t enjoyable to say, like a mushroom trip might be. It was, it was annoying, and it was in the way of my day, or what I was in the middle of doing, and it was like, Yeah, then this is not appropriate, right now.

Bill Gasiamis 47:27
I don’t want to be in this space, and that kind of made it worse. So then the but what I was doing like you, as soon as I understood that I had an arteriovenous malformation, like a blood vessel that was not healthy or not in the best shape, etc. What I did was try to control the controllables. So for me, all I could control was what I consumed, how I went about my day, how much effort and time I put into my work so the amount of hours shrunk.

Bill Gasiamis 48:05
I’ve controlled all those controllables so that by the time we were three years down the track, I hadn’t done my own words to myself, I hadn’t done anything to contribute to the Next one. Personally, if it happens again. It happens, but I haven’t done something to make it possible for the third one.

Mark Vega 48:27
Exactly, okay, and three years after, and then.

Bill Gasiamis 48:32
And that’s almost three years after, and then I was going to work, because by then, I had recovered enough the blood clot in my head that started about the size of a dime became the size of a golf ball, and then that started to decrease in size. And as it started to decrease in size, more and more, my brain came online with the looking after my my nutrition, no sugar, no caffeine, no gluten, no dairy, no alcohol with that, like my body was just in the best shape it had ever been, you know, for many years, for two decades.

Bill Gasiamis 49:10
And then when I got to work, and I was having that third sort of those symptoms again, and I thought of, I sort of knew What was happening. I understood where I was at. I just accepted it. I just accepted it. And I drove myself to the hospital. I just was matter of fact, told them what was happening. You guys do what you got to do. And then my surgeon came in probably a few hours later to check up once she discovered that her patient was back in hospital, and she said, We’ve got to go in and take this out. But I I was prepared for it, so I said to her, yep, no worries.

Bill Gasiamis 49:48
And she was a little bit taken aback by the fact that I responded so positively to the possibility of brain surgery, and she came back and checked again later, are you sure? Are we doing this? Are we going in and take. It out. I said, Whatever comes comes, we have to go in and take it out. The risks of it reoccurring and causing drama are far greater than the likelihood that it’s not going to happen again. So now that the risks are far greater, and my health is quite good, and I’ve prepared myself for three years like it’s the best time to have this surgery.

Bill Gasiamis 50:22
And I remember being wheeled into surgery, and they had an intern and an aesthetist who was struggling to find a vein so they can hook me up to the anesthetic and and I was just coaching him through going now you’ll find that you’re alright, just relax. You’ll be calm. Don’t worry. No problem. I’m the best patient you’ve ever had. I’ve prepared myself for all these years to be the best patient you’ve ever had. So you guys aren’t going to do a great job. I’m going to be a great patient. Everything’s going to go fine. I had, I had done, you know, three years of meditation almost.

Bill Gasiamis 51:00
I had done beforehand, I hired a hypnotherapist to come in and take me through the procedure, how my body should respond and react, tell my body what’s going to happen, give it a little bit of an insight, so that when it gets its head cut open, it doesn’t freak out and start bleeding everywhere. I had done everything. So when I turned up, I was expecting an awesome outcome. I was expecting it.

Bill Gasiamis 51:29
There was no other possibility. Yeah, but good, yes. Cheekily, I had prepared for the worst. One of the mottos that I picked up, it’s some dude in the 40s or 50s. Chuck this motto out there. I think he was from the Emirates or somewhere around there, that part of the world said, expect the best, prepare for the worst.

Mark Vega 51:58
Absolutely, absolutely.

Bill Gasiamis 52:00
That was my motto. So I had prepared for the worst, expected the best outcome. I was trying to also coach the my loved ones, into that phase, into that zone, because they are really highly emotional Greeks. So most of the time they’re not holding their shit together. They’re losing their shit about everything. So I had to try and bring everybody with me onto this journey, so that if they’re calm, then I can be calm, and vice versa. And I woke up out of and what I loved about my surgeon was she was so matter of fact also.

Bill Gasiamis 52:40
So she was just my kind of person, like, I need information just right between the eyes. I don’t give a shit what you’re telling me. Don’t make me guess. Just give it to me. And I woke up from surgery. And you know, when you have any surgery, they want you to move your bowels. They want you to go to the toilet as soon as possible. And they asked me, Have I been yet? I said, No, the nurse, who was probably half my size, and real small framed Asian lady, comes, I’ll help you go to the toilet. Well, what we didn’t know then was my left side’s not working.

Bill Gasiamis 53:14
And I got out of the bed on my left side where she was, and I stepped out of the bed. This is not even 12 hours after surgery, and I fell straight to the ground, and I just collapsed in the high what, what do they call that war, that the the high care ward, or something like that bank straight on my ass, screamed, and then, and then, got back up, got back into my bed, and my surgeon came to check up on me, and she said, How’s things? Where are you at? I was groggy as hell, and my family was there, and everybody and they and they said to her, he fell out of bed.

Bill Gasiamis 53:54
She freaked out, and she goes, why? And I said, I can’t feel my left side. And she just goes, Okay, Book him into rehab. That was it. That’s as much information or detail they should go. Just book him into rehab as soon as possible. Seven days later, I was in rehab, and that’s when the next part of that journey started. So not once did I get fearful of the loss of my life, or anything like that. I’d put a lot of things in place to make good all of the people who I’d wronged, you know, to have my business sorted and managed and run.

Bill Gasiamis 54:35
I had made good on, you know, relationships with family, loved ones, parents, everyone had been told they they were loved and all that kind of stuff, you know, my finances were in order. The family was going to be really comfortable. There wasn’t going to be any debt or any crazy things like that that they were going to have to live with if I had to go, Yeah, you know. So it was like, Okay. We are and as now, now that I’m 50, I do contemplate, like, how long my life will be. Sometimes I do contemplate that, and I try and live from the space of like, just get get it done now.

Bill Gasiamis 55:20
Whatever it is that you need to get done that thing that’s on your mind, just get it done, because tomorrow’s not promised, right? So it’s like, Just do it. It’s not a fear of tomorrow not being promised. It’s just a matter of fact thing, like, it’s true, it’s fact. We’re not going to be around forever. No one that’s right, yeah. So just go for it. Just get it done. And sometimes I even think about things like, whatever pain I’m going through or suffering, whatever it’s like I sometimes I even have these weird thoughts, like, like, in 30 years, you know, it’s all going to be over anyway, so don’t worry about it.

Bill Gasiamis 55:54
Like, if you get to 80 and you pass out, like, all that is going to be over. So don’t it won’t matter anyway, so you’ll be all right. You’ll be able to resist it or put up with it for a little bit longer. Just keep going. Don’t worry about and in the last month, I’ve had a really bad left side. My deficits on the left side have been playing up, and they’ve been way more numb. My muscles have been way tighter. There’s been way more pain, and I’m forever kind of wondering what caused it. But I had, I think I had COVID About a month ago, and that’s kind of made it a lot worse.

Bill Gasiamis 56:31
And that gets me down every so often, like when you when you’re flying, and you feel well, and then something comes in and throws a spanner in the works, like you kind of feel, oh, you know, like I don’t like this. Why is that happening again? You know, this whole thing and these feelings that I thought were behind me, they’re not. They’re still there. I tell that part of the story is kind of just to let people know that this guy who appears on the podcast, you know, seems to be doing great and fine and always tells a positive story and all that kind of stuff.

Bill Gasiamis 57:02
Like, there’s still the roller coaster ride. It still happens, you know, this is 12 years in November. It’ll be 12 years for me since I had brain surgery. 2014, it will be 10 years since I had brain surgery, you know. And still, I live with the whole gamut of experience emotions like everything that stroke does. I still live with it and this, let it go and put it in the past. It is in the past.

Bill Gasiamis 57:34
The events are in the past, but what it does to me in the future is still here, and I have to deal with it every single day. And these podcasts, for me, are part of my therapy, but that’s how right much I need them and how necessary they are, and that’s why I love listening to crazy stories for half an hour about what happened to the other person. You know, I can relate, right?

The Impact of Embolic Stroke on Professional Life

Mark Vega 57:57
You did, you did a great job with that, and I’m glad I said then that. You know, for me, I after five years, I was like, I just wanted it to be done, and the reality is that it’s not going to leave. It was a real thing, and it’s still there. And every once in a while, I’m great, so grateful for all this. August 5, I hurt my knee, injured my knee, I love one of my knees, and had injured them in the past many times, but it was, here’s an interesting thing. So when I hit.

Bill Gasiamis 58:29
Move a little closer to your mic.

Mark Vega 58:31
I’m sorry about that. When I injured the knee, I knew for a fact it was so much gratitude, because I realized bill that, okay, this has nothing to do with those strokes, yeah, and it was very, right? It was a really interesting feeling, because I hadn’t been it was a, you know, was a unique injury, and I knew that’s what it was, for sure, right? So I was kind of grateful for that.

Mark Vega 58:55
So of course, rehabbed it and used discipline and all that, and but it’s really, it’s really good to it’s good, really good to accept what is and things are as they not. Those things are as they are, not as you wish them to be or as you want them to be they are. That’s it, right? So true. So embracing that kind of philosophy really helps.

Bill Gasiamis 59:15
That’s awesome. As a as a lawyer, you can understand right? Also probably why some of your colleagues might not tell anybody, because if they rely on their brain to make sure that paperwork is, you know, all the all the eyes are dotted, all the T’s are crossed, and to determine what a piece of law means, or how to apply it, or the rest of it, and if they can’t, if they’re perceived as not being able to do it that’s really going to impact their their their livelihood, and perhaps, you know, their practice, etcetera.

Bill Gasiamis 59:49
And it might put some doubt into people’s minds, the client’s minds, as to whether this, by this person, is capable of, you know, running my my. Business or helping me get through a case or trial or whatever. Can you sort of see that as being legitimate?

Mark Vega 1:00:07
And I’m glad you asked about that, because probably a couple years after, I was curious, I wanted to find talk with other lawyers, because I thought was great, you know, podcast topic, right? I mean, like, this is a transitional period, like after the stroke, you’re still out there practicing. And I know a lot of people did what you did, what I did, like you picked the business back up, and you reconfigure it and and you’re not configuring it to make allocations for whatever deficit you might have, at least I didn’t do that’s what I was doing.

Mark Vega 1:00:37
I just shut it all down until I figured out what’s going on, and then kind of open it back up. Because I wanted to open it back up again, right? But, the lawyers, and I think it’s important to do that a lawyer should be just like I think out people, lawyers who are closeted, alcoholics or addicts or abusers one thing or another, or if you’ve got any kind of addiction, a gambling addiction or whatever, or you have 15 mistresses or whatever, anything, any choices we make right, any choices we make end up impacting can impact a practice.

Mark Vega 1:01:13
And even though most people aren’t choosing strokes, I think choosing to live out loud with them is much better, because if you try to start to live out loud with them, and you can’t, if you notice a deficit, if you notice it, and you’re like, you know that it’s impacting your practice, you have a duty, obligation, responsibility under the law, because you have to remain your level of competency as lawyers. So you there’s, there’s minimum continuing legal education efforts that you mustn’t and undertake throughout the globe.

Mark Vega 1:01:43
Around the globe, all lawyer all lawyer organizations require a minimum amount amount of continuing legal education, right? So that’s for everybody. And when I knocked on the door the State Bar of California, for example, there was no category that was interested in this, and that the American Bar Association level, there is a top level kind of committee thinking about these things. But it’s a it’s a very alarming thing to have to invade the privacy of someone to because you can’t require someone to talk about anything, right? Just like an alcoholic lawyer or not.

Mark Vega 1:02:19
You people, some people talk about it. Some people don’t, but I’m a big advocate for coming out with it, because it is what it is. And I I’ve known lawyers who came under they suffered from strokes and it took them out. I mean, it can’t. They can’t function anymore. They have a significantly less ability, mental aptitude to continue to work the way they used to, right? And so they do something else, but the challenge, I think, is to just keep talking about so that’s why I like this podcast. That’s why I like you, and that’s why I like same thing with running.

Mark Vega 1:02:55
Like I run because and I love the idea of embracing people who want to run after stroke, because not everybody can, right, but a lot of people aspire to do that, even just get movement of some sort, right. But there is something to be celebrated, and your platform is a good one, and it’s growing, and thank goodness for that. But I think there’s big communities of stroke survivors who relate to not just because they’re strokes, but they’re, you know, they’re pipe bidders and they’re lawyers and they’re runners and they’re Fisher persons, and they love to bowl.

Mark Vega 1:03:28
And they’re motorcycle riders and they love snakes, and there’s all kinds of other hobbies and things we do in life. And I think bringing your stroke awareness and your lived life with respect to the stroke, bringing that alongside, don’t hide it is the better approach. It is for me anyway. So I don’t work in a stroke conversation with everybody, but if I’m picking up signals, if you pick up signals from people like you know, it’s a safe conversation, and it’s a good one, and usually it is.

Bill Gasiamis 1:03:59
That is, you know what? It is being acknowledged for something that somebody else might have missed. You know you can see, you know that you know the majority of disabilities on in in the western world as a result of stroke. So when you see somebody.

Mark Vega 1:04:15
Really, that’s a legitimate statistic?

Bill Gasiamis 1:04:18
That’s a legitimate statistic.

Mark Vega 1:04:19
Majority of disabilities around the world.

Bill Gasiamis 1:04:23
In the Western world. So when you see somebody who has a deficit, left side, right side, in a wheelchair, limping an arm that doesn’t work properly, you know something like that. Most the greatest cause of disability is stroke, and you know a stroke person, I know a stroke person. All we got to do is, like, walk across them in the street. You know, you know exactly who it is. And because I don’t look like I had a stroke, it’s difficult to stop somebody and go, Hey, you know how you going and all that kind of stuff.

Preparation and Strategy for the 100-Kilometer Run

Bill Gasiamis 1:04:59
But still, when I see people who are, you know, for example, in our central business district selling, we have a magazine that’s a not for profit organization has created this magazine. It’s called the big issue, and it’s and what happens is people who might not be able to work full time or living hard, living on the street, whatever, they have a way to make some income. So they go buy some magazines, or they sell it on the street in their corner. They get allocated a space, and, you know, they they make a little bit of revenue.

Bill Gasiamis 1:05:34
And people just go buy a seven or $8 magazine, and they get and the person selling it gets half the the cost of the magazine. So when you see somebody like that, you can really tell, I can really tell who are the ones who have been injured by some kind of a neurological condition, or have had some kind of a stroke or something like that, it makes the conversation of buying the magazine, more than just I bought the magazine. You know, you can also then go to, how long have you been working like this? You know, what have you been up to? What happened to you?

Bill Gasiamis 1:06:09
You know, you can start a conversation. They’re all willing to share, and what I get from people is who are challenged in some way life, some way, shape or form, because of life. What I get from them all the time is nobody ever stops to talk. Nobody ever has a conversation. Thank they. Thank you simply for just sitting there and talking to them rather than just doing the transaction. You know some people who have got a hat out and ask for money and are looking for a feed, or they’re looking for to raise some money for accommodation for one night, you know.

Bill Gasiamis 1:06:44
In some shelter or something you see, and you chat to them, literally for two or three minutes. They they don’t say anything else, other than thanks for stopping and asking and talking. Man, that’s really interesting to me, that’s what they need, more than the money they’re happy for you to just sit there and have a chat, even if I didn’t buy a magazine from this guy, happy for the chat like it’s just ridiculous.

Bill Gasiamis 1:07:08
How much people just need to have a chat, and that’s so easy to do. And that’s like you, I don’t talk at your pace, but I love the sound of my own voice, right? I love talking. I have no problem with it. So it’s my favorite thing to do, I’ll do it forever. You know what I want to talk about, though, because I’ve had a little bit of experience with this. What I want to talk about is, how far have you run? What’s the longest distance you’ve run so far?

Mark Vega 1:07:41
The longest distance I’ve run so far, the longest distance I’ve run so far is 50k, 50 kilometers, so 32 miles and in a race. And so I’ve run a handful of marathons, and I’m doing another 50k in January, and then a 50 miler in April. And these are as aspirational goals, in a way, because each we have to listen to our body, so that’s, but anyway, that’s the answer.

Mark Vega 1:08:14
That’s the answer the question. I’d love to figure out a way to get to organize some stroke survivors, and I want to call it a stroke run, even if they’re not running at all, even if they’re just dragging their stumps behind them, like getting, you know what I mean, yeah, there’s, there’s something fun and funny about that, I think. And I really, I’ve been working on that for a while.

Bill Gasiamis 1:08:38
In Australia, there’s a stride for stroke. The Stroke Foundation has an event which is called stride for stroke. And you register to do 5, 10, whatever you want. And some people will ride a recumbent bike or a normal bike or whatever. Some people will run. Some people will walk it, whatever it is, and basically you nominate how far you’re going to go and how you’re going to do it, and then you get people to support you, and they raise money for the Stroke Foundation, and it’s an annual event, stride for strokes. It’s really cool. And you could, you know, do something along those lines.

Bill Gasiamis 1:09:11
Now, the reason I asked you about running is because recently, a friend of mine, the guy who wrote the forward in my book, Michael Wilkinson, he comes to me, and he goes, I’m going to go and run 100 kilometers. And he goes to me, would you support me? Would you come along and support me? And I’m like, dude, of course, I’m going to come and support you. What do I need to do? He goes, I want you to be the guy who turns up bit of water, food, you know, my gear.

Mark Vega 1:09:42
He wants it accrue. He wants to be a crew member.

Bill Gasiamis 1:09:44
Yeah, he wants me to be a crew member. I’m like, yeah, man, sure, I can do that, no problem. How far are you kind of run? And he goes 100 kilometers, 62 mile. I’m like ‘You are insane, bro. What the hell are you doing? But yeah, I’m there for sure. Sure, no problem. So a couple of months ago, we went out to a place here in Victoria, where I live, and it’s along the coast, and we, he’s training, he’s preparing. And he says ‘But I’m never going to run 100 kilometers in preparation for this.

Bill Gasiamis 1:10:19
He said his maximum he had, only he had ever run was, I think, 32 mile, 30 miles, something like that. His maximum. Yeah, because so he had done a lot, he had done a lot of running in the days leading up to it, but he had never run a distance further than about 30 Yes, yeah, 32 mile or, I think, 32 miles. It doesn’t matter. He doesn’t basically had never gone anywhere near 100k and I’m like, okay, no worries. So what we how does this work? What do we do?

Bill Gasiamis 1:10:48
And he said to me ‘Well, you’re gonna, we’re gonna go there the day before. I’m gonna have my kit, you know, we’ll talk through the strategy, what my expectations are, how I’m gonna where I’m gonna meet you, the timeline, when I expect to be there, all that kind of stuff. I’m like ‘Sweet, no worries. So we go there.

Mark Vega 1:11:05
How many people is going to do this? You by yourself? Are there two crew members?

Bill Gasiamis 1:11:08
Just me, because he couldn’t ask.

Mark Vega 1:11:12
Okay, keep going.

Bill Gasiamis 1:11:13
I had no idea. He couldn’t ask anyone else, because everyone else that he knows would have said, would have tried to, like, don’t do it, man, it’s too far.

Mark Vega 1:11:24
They would have done that. I can’t be bothered ride or die. You’re the guy.

Bill Gasiamis 1:11:27
I’m like ‘Fucking do it, don’t worry about it. And he loves that about me, that’s my attitude. And then he and then he goes. So day before, he’s taking me through that. Okay, so what time are we waking up? Is that 4:30 in the morning? Okay, 4:30 in the morning. Alright, cool, no problem. Are you going to set your alarm? He said ‘Yes, I’m going to also set my alarm for 15 minutes after your alarm, in case something goes wrong and we don’t wake up. I don’t know what. So he’s got a massive bolt, a massive container of pasta that he starts eating at about nine o’clock.

Bill Gasiamis 1:12:04
And he’s going to try and carve up and all that kind of stuff. It’s ridiculous. It’s the most disgusting thing I’ve ever seen, pasta with tuna and lentils like terrible, and we get good stuff ‘Oh, terrible. We get up the next morning at 4:30 and he gets his kid on, and we drive down to the first site. And basically my job is to drop him off at the first at the at the start line, and then drive to the next stop and make sure I’m there for him and support him and the rest of it. And it’s like, cool, no worries. I’m in the car and I’m driving to each location. And, you know, he’s done 10 kilometers.

Challenges and Mental Resilience at 50 Kilometers

Bill Gasiamis 1:12:47
Everything is looking great. It’s fantastic. He’s done 20 kilometers. You know, that’s a walk in the park for him. He’s done that heaps of times, everything’s fine. It’s morning. I’m okay. There’s 1000s of other people in this event running everywhere, and then we go 30 kilometers. He’s loving it, he’s killing it, he gets to 40 kilometers, everything’s okay.

Bill Gasiamis 1:13:10
Still doesn’t look like a guy who ran 40 kilometers, as far as I’m concerned, like it looks amazing. Gets to 50 kilometers, the same, but at 50 kilometers, and I’m not saying this to do anything to you, hopefully you think differently. At 50 kilometers, he gets to the 50 kilometer mark, which is the star, and stop, and it’s the halfway mark, it’s the start line and it’s the end.

Mark Vega 1:13:38
He turns around and goes back, yeah, out and back.

Bill Gasiamis 1:13:41
So it’s a loop, right?

Mark Vega 1:13:44
It’s a whole he keeps going and does it again. It doesn’t go it’s kind of a loop.

Bill Gasiamis 1:13:48
You always end up at the same location, right? And then it’s not one massive it’s not one little loop, it’s a massive loop. So you only ever get.

Mark Vega 1:13:58
No, I understand, yeah, 50 is a 50k loop. So you go around with one, and then you either keep doing it twice, or you go around and you go backwards.

Bill Gasiamis 1:14:06
That’s it, and what he starts doing is seeing the people who are finishing at 50, and going, I have to do another 50. And he’s going ‘Oh, my God, they’re finishing. And he’s been running, you know, for four hours already, and then he’s thinking ‘Oh, man, this is going to be a long day. And I’m meeting the same people every time I’m at a stop, I say.

Bill Gasiamis 1:14:06
You’re driving to the next stop, and so are they.

Bill Gasiamis 1:14:36
Yeah, and we’re just chatting and the rest of it. And he’s getting through the run. And by about 10 o’clock at night, he’s got 12 kilometers to go, 10 or 12, something like that. 10 or 12 kilometers to go. And I’m sitting there having a conversation with one of those other crew members for this other person, yes, yes, yes. And the guy goes to me, how are you? How are you? Hey, how are you? Man, I’m going. Man, I am exhausted. I’ve been walking around trying to get this guy over the line for since 4:30 in the morning. It’s 10 o’clock at night, and I’m exhausted.

Bill Gasiamis 1:15:13
Five minutes later, my mate turns up, and he’s just run 89 kilometers or something, and I’m complaining that I’m exhausted. Yeah, and I don’t know how he’s doing it. I don’t know how he’s going to do the last few kilometers. I’ve got no idea. But sure enough, the ability to put the men, to put his mental state in as in the zone of this is not a negotiable. You must complete this run. The analogy, for me, is exactly what we’ve been through with stroke.

Bill Gasiamis 1:15:50
The people who are doing it hard, the people who are doing it tough, there is no you don’t have an option to stop trying, to go for recovery, to stop overcoming your ill health, to stop, you know, finding a solution for the pain to you don’t have a choice. You must continue to do that. And I know that this guy volunteered to put himself in that situation, and we didn’t. But that’s the reality of it is, is that you must continue the struggle, the the the lesson, the whatever it is that you need, you must continue to do that.

Bill Gasiamis 1:16:29
When I asked him ‘Why the hell he would run 100 kilometers. He goes, was to put himself into a state of suffering. That’s what it was about. And the suffering when he was in the state of suffering, the suffering was where he was meant to be, and that attitude towards it was what made it possible for him. So when he found himself suffering at 60, 70, 80, 90, he goes ‘Well, this is exactly what you wanted. This is what you signed up for. So you’ve achieved. You’re in exactly where you want it to be. So just keep going. And he got over the line, and he was just, he was a mess.

Bill Gasiamis 1:17:15
He was probably talking like a stroke survivor. After the first incident, he had no idea what he was doing in the car. He was cramping up, and everything was terrible, and he couldn’t get comfortable. And I took him to his house, his family was overseas at the time, and I took him to his house, and literally just pushed him into I didn’t push him literally into his bed, but basically I just encouraged him that last step of the way to just get into bed. He got into bed and flaked it, and that was it. He goes ‘Just close the door on the way. Close the door. My way out, and I left, and I went home.

The Importance of Crewing and Support

Bill Gasiamis 1:17:50
And it was seeing him. And the amount of people that did it, and we’re all above 50, the people that I saw that were running at the end were all above 50, yeah. And just to see them do that and get through and I’ve overcome whatever demons they had to overcome to get over the line. Just for me, it was like a massive it was like a massive thing for me to just witness it rather than participate in I can apply that to my recovery and to my life and to my troubles, that’s all my suffering. It’s just, I don’t know. It was profound experience for me, and I didn’t even run it.

Mark Vega 1:18:28
I think you just, you should share that story with people, because people don’t know about crewing. They don’t know that thing, that it’s a thing. And the moment you do ever hear somebody who says to you, you know, I’m going to run this long race, I’m going to do 100 miles, I’m going to do it, you gotta your story would allow people to not be afraid of it and not try to talk them out of it, but instead say ‘I’m in. How can I help? Because you’re right. Like crewing is so important.

Mark Vega 1:18:59
Because for the guy, the other thing that happens when you come in, because I had the opportunity to crew. A couple months ago, I got the crew for one of my coaches who was doing 100 mile race. So it was three of us, and we crewed and we went. We could only go like every I forget how many miles, but anyway, it was all night long. Was crazy, was interesting, but it was so satisfying for me, because when you guy came in and he saw you, he had this, there’s a level of expectation. And so when you just see that alone, that’s a jolt of adrenaline and endorphins.

Bill Gasiamis’s Experience with Tony Robbins and Fire Walking

Mark Vega 1:19:30
And you know what I mean? Because it’s another contributor to believing in your brain. It’s like ‘Yep, this is going how it’s supposed to all good, all good. And you can never really guess what the terrain and the weather and other people in your gastrointestinal tract and all that eating all those carbs, whatever that’s before, but later in the day might not be so good, whatever. So he did it. So encourage other people do it right? Because it just so cool. I’m glad you had that experience, I’m sorry.

Bill Gasiamis 1:19:56
So good. One of the first people I interviewed about stroke was, decided to run a marathon with left side foot drop. And you know, you know, had a stroke in her when she was a kid, you know, like, I don’t know, 10 years old or something. Donna Campisi, I think it was very early episodes, and she decided in her 40s she was going to run a first, her first marathon, she trained for ages. She got two coaches, the rest of it, and she did it. 40 kilometers took her ages, like, six hours, seven hours, something like that, with foot drop.

Bill Gasiamis 1:20:33
You know, you’re not, you know you’re not supposed to be able to do that long of a distance would drop, right? So she did it. And that’s the thing. It’s like, if the people listening here are thinking of doing something ridiculously crazy that should not be possible, that shouldn’t really find a way to get it done, it’s going to lift your spirits.

Bill Gasiamis 1:20:52
It’s going to make you feel like you’ve overcome something, and change the way that you see the world like you know what it was for me years ago, before my strokes, I went and saw Tony Robbins in Melbourne, here in Australia. And it’s a four day event, and one of the things that he does at the end of the first day is he primes you to do a fire walk.

Mark Vega 1:21:15
Right, walk on calls.

Bill Gasiamis 1:21:16
Yeah, and I’m like ‘How the hell it’s first thing in the morning day one, and he goes for 12 or 16 hours. Tony Robbins is as energetic as you It’s like he’s crazy the guy. And he goes at the end of tonight, we’re going to walk on calls. Are you insane? I just turned up here. Like, how do you mean I’m going to work on calls? Walker, I’ve never done anything difficult in my life. I’m going to walk on Coles. What are you talking about? And sure enough, it gets you so primed, you get to the front of the line. And I’d say it’s about, it’s about five or six meters this walk on Coles, yeah?

Bill Gasiamis 1:21:55
And I’m like, 15 feet, what? 2020? Feet, something like that, right? And I’m like, everyone’s in line. 1000s of people are in line to walk on calls on these fire pits. There’s a whole range of them. And I’m like ‘Okay, so I’m here. Everyone else is doing it. I’ve gotta do it. And he you go through what he taught you to say and how to breathe and all that kind of stuff. The guy next to you is priming you as well, and he’s getting getting you ready to go.

Bill Gasiamis 1:22:26
And just before I step on, he goes, hang on a sec. He goes, let me go and get some more coals, and he goes and gets a wheelbarrow full of bright red coals, and he throws them on the ground, and he pats it down. And then he says ‘Okay, you can go now.

Mark Vega 1:22:44
Oh my god.

Bill Gasiamis 1:22:45
How is this? And I go for the walk, and sure enough, I get to the other side, and my feet have not burned, and nothing’s wrong. Nothing’s happened to me. The coals were hot. You can feel the the the the hot, the heat like radiating off the coals while you’re standing there getting ready to go, while the guy’s putting fresh coals on. And that was the thing for me, that sort of changed my mind. It’s like you’ve done something that you never expected, that you would ever do, and you’ve managed to somehow will your body over the line and make your body understand what needs not happen.

Bill Gasiamis 1:23:28
You know, you you shouldn’t get burnt here. So do these things to avoid getting burnt, like play this role. You know, I don’t know, change your chemistry. Do whatever you need to do, to not get burnt while you and that’s kind of the attitude that I used when I went into surgery. It’s like, you know, meditation. It was hypnotherapy. Talk to the body, give it some instructions, give it some feedback, tell it what it needs to do, put in two and a half years of effort to get it primed and ready, the whole thing kind of, let’s just it.

Bill Gasiamis 1:24:06
It shows we’re capable of a lot more than we are, you know, and that we can do this. And that’s kind of what I want for my stroke survivors who are listening to this like always, it’s be more than somebody else has ever told you you’re capable of being For God’s sake, like I wrote a book and I have a podcast for God’s sake, like, Do you know what I mean, it’s insane.

Mark Vega 1:24:31
Yes, exactly. Yes, I do, I do know. I mean, there’s a there’s a over as we get older, I suppose we read and get exposed to a lot of different type of philosophies and approaches to life, but it was one of my favorite little sentiments that I pull out the runner’s speed is his own, yet even so, he is helped by being cheered on, that’s from Seneca. Is letters on ethics, one, 9.6. So I find myself as a cheerleader in so many units, in so many verticals, and I have always been that guy, always actually. So when it came to me, I found maybe I was reluctant to cheer, in a way, to cheer for myself, right?

Mark Vega’s Philosophy and Running Goals

Mark Vega 1:25:18
But when when faced with the strokes and after the strokes, I don’t know if you have any, there’s any version of this in you, but it’s not enough for me just to run a marathon. There’s not enough for me just to run one. It’s almost like getting tattoos. Once you have one, you end up getting a bunch, because there’s some addictive element to it, I think, right? And people have talked about that a lot. So for me, it was initially doing New York at all, just doing it at all was blew my mind that I could do it. And then I did say ‘Well, could I do it again?

Mark Vega 1:25:56
And I’m never fast, so I’m never I’m not racing for somebody else. My competition is with myself and just showing up, doing the training and finishing in a way, when you run a race, when you run running races, it’s a little bit like a participation award, because you just have to finish the race and you get the medal. Oh, yeah. All you have to do is finish, you have to win. Yeah, everybody gets a medal. You have to cross the finish line, but you don’t get the medal unless you finish the race, right?

Mark Vega 1:26:26
So the concept of finishing, committing to the training, doing the entire race, getting that medal, that’s very, very satisfying. But for me, there’s something about what you just said, like I in my head I wanted to do crew, or I was. I do a lot of volunteering too. So I volunteered at the 92 mile aid station in a 100 mile race last April. Now for years, I’d already done a lot of long races. I’ve done crazy stuff, I did the tough rock in Boston, which is I dressed in all of my military gear, and I had a 42 pound rucksack on my back, and I hiked a marathon like so I’d done all kinds of crazy things again.

Mark Vega 1:27:10
Not because I was first, just because I wanted to do it, and I finished it, you got it right. So I was at the aid station of this 100 mile race last April, and most of the people are coming finishing, they’re all old. Well, they’re older than me, and at the time, I was 60, yeah, I think it was 60. And the guys coming across the line, there’s like, you know, there’s probably 30 people that finished the hunter, this race, this 100 mile Raven, and the guys coming across the line are all older than me, and so I’m thinking ‘Wait a minute.

Mark Vega 1:27:43
So in that moment, Bill, I was like ‘Oh, wait a minute. Oh, wait a minute. I am not done yet, no way. And these guys, I don’t know what strokes had, it didn’t matter, but I knew me. I’m like, I’m coming back. I’m going to do that honorable race. So that was last April, and I committed to honorable race. And then after that, it got with my coach and the coaches, Ball Coach, like, great. That’s great, but let’s put the body in the right motion, and let’s see what happens. So literally, gotta run a 50k then a 50 miler, then after that, is a 100k That’s 62 miles.

Mark Vega 1:28:14
So my goal is, I want to run the 62k right before I turn 62 so I can run the number of miles I got in my years, right? And then after that, a couple months later, is the 100 miler. And but in each instance, I’m glad you said 100k because I was trying to figure out at 50 miles, they don’t need a crew. And usually, in every race, a long distance race, they usually only let a crew come in. If it’s 100 mile race, they only let crews come in at 100k so you have to finish 62 miles before you can even have a crew come in, right?

The Role of Mindset in Embolic Stroke Recovery and Future Goals

Mark Vega 1:28:46
For some for some miles, for some races, for some races. So this one I did in Wisconsin, they we were able to come in, I think, at 50k so 32 miles, right? They finished first. 32 1/3 of the race. It finished and we got the crew, but it was the same thing, we would drive, and basically all the crew like you did it, just like you did, where all of us were in vans and cars, you know. So we would all show up at the parking lot, all unload our stuff, meet our runner level runner would come passes, pack our stuff up, get back in the car, and drive to the next parking lot or wherever it was, right?

Mark Vega 1:29:20
That’s what you did, yeah? And you do end up meeting and talking with the crew people, the family members and supporters, right? Yeah, very satisfying, very sad. And then when some runners dropped out, I don’t know if you experienced this, yeah, but yeah, there was some runners that I was I bonded not with a runner, but with the crew, right? And so we just talking, and then their Runner was like really in bad way, and so they came in and just finished.

Mark Vega 1:29:47
And so it was interesting, because you don’t get to say goodbye to those people. You just really, like, you just nod and like, you know, whatever you know, you maybe you’ll see them in the next race, right? But it’s just heartbreaking.

Bill Gasiamis 1:30:01
It was such an interesting, profound experience. And like I said, for me, the thing that I’ve got that is, you know, once you’ve got one, you need to keep going. I think it’s the episodes of this podcast. Like, I’m trying to get 1000 episodes. There’s 330 nearly. You know, it’s like, that would be a good thing to get to 1000 episodes. I’m not sure if there’ll ever be anyone who does 1000 episodes of podcasts with stroke survivors.

Final Reflections and Encouragement

Bill Gasiamis 1:30:31
And that’s what I was lacking. You know, I was lacking access to stories, tools, information, and it’s like, that’s what I want to put out. And I get something from every interview, I learned something from everyone who I’ve interviewed. So that’s kind of my thing we are probably at that time when we need to wrap up.

Mark Vega 1:30:59
And what I’d love to ask, I’m just following your lead. It’s your baby. But this is, yeah, this has been great. It’s been good.

Bill Gasiamis 1:31:07
I want to ask the last three questions, which I’ve started asking.

Mark Vega 1:31:12
So I’ll keep the answer short then, I got you.

Bill Gasiamis 1:31:18
What was the hardest thing about stroke for you?

Mark Vega 1:31:25
The hardest thing about stroke for me ended up being realizing that I there was nothing I could do after the first one. We didn’t know what to how to prevent the second one, and so we didn’t prevent the second one, but I was grateful to learn that we really have to pay attention to your body, I had to pay attention to my body. So I’m not in control of many things. Only the impressions that I make are the perceptions I have and the influences that come in. So I guard my impressions and be mindful of my opinions and judgments and how I kind of push those things out in the world.

Mark Vega 1:32:00
For me, that’s all I can control. So I can’t control the body, can’t control the brain, I can’t control these things. And just as you said, you know, our intake, our nutrition, our exercise, sleep, hydration, all those things are physical things that are critically important, but we’re not in control of them. So I guess a hard thing to learn was normally was hard. It was just something I had no idea of. I didn’t know how much I had to appreciate that I’m not very much in control.

Mark Vega 1:32:28
I can just keep bringing my body the right kind of nutrients and and and resources that I can bring to the table. And then be grateful every day. Be mindful and be grateful every single day. No tomorrow is promised for me or anything.

Bill Gasiamis 1:32:43
Yeah, what’s something that stroke has taught you?

Mark Vega 1:32:49
I guess I come I conflated those two questions so stroke taught me that there’s tomorrow’s promise to noone. I need to be right here, right now. I need to be I need to listen, to be engaged and and always be listening, realize that I’m in control of very few things. I am in control of guarding the impressions I make and the opinions and judgments that I form on related to the the opinions that I have, or the impressions of that I take up in the world.

Mark Vega 1:33:22
That’s it so, not really in control of anything else. Everything else is not my business, really, It’s not. So I perfected that. I feel like I’ve taken the strokes of giving me guidance to encourage me, I suppose, on this philosophical path that has ultimately served me very, very well.

Advice for Stroke Survivors and Final Thoughts

Bill Gasiamis 1:33:44
Beautiful. There’s a whole bunch of stroke survivors listening, what would you like to tell them?

Mark Vega 1:34:01
If you plan to build an empire, focus inward. You have that much power and control, it’s not about what is happening to you from the outside. It’s just not we have a lot of control and power within ourselves. How we think about things, we’re in charge of our own opinions, and we can guide our perceptions. And so just as Bill started by saying ‘Go in with that surgery with the right mindset, I’m going to thrive. I’m not only going to survive, I’m going to thrive.

Mark Vega 1:34:37
I have the mental capability. I have the power, the stamina, that education, the love that I’ve received and that I’ve given I am ready for this moment, and I think that’s within all of us. You have the capacity to do that. And so I hope you do and I hope you remember that stroke is a badge of honor, it’s something you can thrive. With it’s like you’ve you’ve gotten a driver’s license in the past, you might have gotten XYZ degrees, you might have had this, XYZ experiences, you might have participated in the military campaigns, or you might have volunteered for this or that.

Mark Vega 1:35:14
And you also had strokes, right? It’s an asset. Stroke is one of your biggest resources. We don’t pull it out all the time, but we know a lot about it, and so the greatest thing you can do is probably listen to the next stroke survivor that comes along. And you’re not going to know them from their artifacts or from their deficits, right? They might look like someone like me, sounds and talks like everything just fine, and it is, but we have to work to get there, and we certainly have to support each other. So thank you, Bill for asking that question.

Mark Vega 1:35:49
Thank you for having me on the episode today too. I love the program, and I’ll tell you this, I will definitely cheer you on towards 1000 we’ll reconnect many times between today and then, because you’ve inspired me, I’m really excited about stroke run, and you gave me a great idea while we’re on the podcast about creating an organization. I want to create a stroke run and event.

Mark Vega 1:36:16
But here’s the difference, I’m going to educate and try to bring people in and let them experience being a crew member. So even though it’s a 5k right, or a 10k whatever it is, you can sign up to run and not just sign up to volunteer, I want to assign you to be a member of a crew the one of the participants. Can you imagine that? How about that? Would you help me in that regard? If I put together something like that? Love that we can talk about that, right?

Bill Gasiamis 1:36:46
I love that not only are you signing up to participate as a rider, runner, walker, whatever, but also you’re volunteering to crew so that a runner, walker, rider, doesn’t have to do it on their own. If they haven’t got anyone to help them.

Mark Vega 1:37:04
That means that’s right, every half a mile, depending how long it is, every half a mile or one mile, when they start wheeling their way, they’re they’re dragging their foot. They are however, they’re being ambulatory to a point where they get to that half mile mark. That person’s crew is right there. It might be comprised of two people, three people, or even one person sometime.

Mark Vega 1:37:26
But that’s what they need, and they are ready to replenish the water, you know, give them a new pair of socks, put a new smile on their face, switch out their hat, give them a shoulder massage, get them ready to get back on the track and get in the race. That sound good, we’re good with that.

Bill Gasiamis 1:37:43
Excellent. Thank you so much. All right.

Mark Vega 1:37:46
We’ll call it the stroke run.

Bill Gasiamis 1:37:48
Call it the stroke run, absolutely, man. Thank you so much. There will be links to Mark’s socials and the website, the stroke run website in the show notes, thank you for joining me, man, and thanks for the conversation, I really appreciate it.

Mark Vega 1:38:04
I’ve loved it, and I God bless you with your editing skills, because this has gone on a long time, but I’ve enjoyed every minute of it. You’re awesome, your energy is perfect. It comes right through the screen, right through the microphone. It’s calming, it’s fun. I trust it.

Bill Gasiamis 1:38:22
That’s a wrap, beautiful. Oh, my God, thanks Mark. Thank you so much, man. Reach out anytime. I’m going to get this up, probably about three or four weeks from now, because there’s a few in the pipeline. And, yeah, just, that’s it, man, just, thank you so much. I really appreciate it, it’s lovely.

Mark Vega 1:38:42
Excellent, man, excellent. I’ll keep in touch. This is a lot of fun. You’re giving me inspiration now, I better get the stroke run website. Really crushing it. Now we’re doing it. I’m going to, I’m going to create the run. I’m telling you do it.

Bill Gasiamis 1:38:53
I’m looking forward to it. You know, I want to know, I might, I might even come and run in the first one.

Mark Vega 1:38:59
Excellent, okay, or at least crew, you can crew.

Bill Gasiamis 1:39:05
Yeah, I can crew. 200% I can definitely crew, whether I run or not.

Mark Vega 1:39:10
But if you are one of our star athletes, wow, that would be pretty cool too.

Bill Gasiamis 1:39:14
Man, you never know. I would love to consider that, yep, absolutely.

Mark Vega 1:39:18
Okay, good. Alright, very well, take care, man, see you later bro. Bye, bye.

Bill Gasiamis 1:39:23
That brings us to the end of this episode with Mark Vega. His story of surviving two embolic strokes and finding strength in adversity is a powerful reminder of the resilience within us all. Mark’s insights into gratitude mindset and the importance of staying active are lessons we can all carry forward in our journeys. Before we wrap up, I’d like to ask for your support in a few simple ways. If you enjoyed today’s episode, please leave a five star review on Spotify or iTunes or like and comment on YouTube.

Bill Gasiamis 1:39:57
Your feedback not only inspires me to keep going, but also helps others find the podcast and join our growing community. And if you’re ready to support the podcast further, consider joining my patreon at patreon.com/recoveryafterstroke. Together, we can continue to share stories that inspire and connect stroke survivors around the world. Thank you for tuning in today.

Bill Gasiamis 1:40:23
Be sure to explore the resources available at recoveryafterstroke.com, and remember to grab your copy of the unexpected way the stroke became the best thing that happened via Amazon or recoveryafterstroke.com/book. I’ll see you in the next episode. Until then, take care and keep moving forward.

Intro 1:40:45
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 1:41:15
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 1:41:39
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 1:42:06
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.

 

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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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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
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Intro 1:16:12
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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 Details04:06 Symptoms and Initial Reactions07:16 Hospital Experience and Initial Recovery13:00 Holistic Recovery and Emotional Impact19:42 Lifestyle Changes and Physical […]

The post Pete Rumpel: From Stroke Survivor to Inspiration appeared first on Recovery After Stroke.