Adaptive Yoga for Stroke Recovery: A Comprehensive Guide

Introduction

Welcome to our comprehensive guide on adaptive yoga for stroke recovery. In this article, we delve into the therapeutic benefits of adaptive yoga for stroke patients and how it can aid in the rehabilitation process.

Understanding Stroke Rehabilitation

Stroke rehabilitation is pivotal for aiding stroke survivors in regaining independence and improving their quality of life. While traditional rehabilitation methods are crucial, integrating complementary approaches like adaptive yoga can enhance the overall recovery journey.

The Therapeutic Benefits of Adaptive Yoga

Adaptive yoga is a modified form of yoga that accommodates individuals with varying abilities and physical limitations. For stroke patients, adaptive yoga offers several therapeutic benefits, including:

• Customized Modifications: Adaptive yoga instructors tailor poses and sequences to meet the unique needs and abilities of stroke survivors, ensuring safety and effectiveness.
• Improved Mobility: Gentle, modified yoga poses help improve mobility and range of motion, addressing common post-stroke challenges such as muscle stiffness and weakness.
• Enhanced Mind-Body Connection: Adaptive yoga emphasizes mindfulness and body awareness, fostering a deeper connection between mind and body, which is essential for stroke recovery.
• Emotional Well-being: The calming nature of adaptive yoga promotes relaxation and reduces anxiety and depression commonly experienced by stroke survivors.
• Community Support: Participating in adaptive yoga classes provides stroke patients with a supportive community of fellow survivors, fostering a sense of belonging and camaraderie.

Incorporating Adaptive Yoga into Stroke Rehabilitation

Integrating adaptive yoga into stroke rehabilitation requires careful consideration and collaboration between healthcare providers and certified yoga instructors. Here are some tips for incorporating adaptive yoga into a stroke recovery program:

1. Professional Guidance: Stroke survivors should consult with their healthcare team and seek guidance from certified adaptive yoga instructors to ensure that the practice is safe and appropriate for their individual needs.
2. Accessible Props and Equipment: Utilize props such as blocks, straps, and chairs to make yoga poses more accessible and comfortable for stroke survivors with mobility limitations.
3. Focus on Breath Awareness: Emphasize breath awareness and gentle breathing techniques during adaptive yoga sessions to promote relaxation and stress reduction.
4. Encourage Self-Compassion: Encourage stroke survivors to practice self-compassion and acceptance, recognizing that progress may be gradual and non-linear.
5. Celebrate Progress: Celebrate small victories and milestones achieved through adaptive yoga practice, fostering motivation and a positive outlook on the recovery journey.

Conclusion

In conclusion, adaptive yoga is a valuable and inclusive approach to stroke rehabilitation, offering a range of physical, emotional, and social benefits for survivors. By incorporating adaptive yoga into the recovery process, stroke patients can enhance their overall well-being and resilience on the path to recovery.

Remember, adaptive yoga offers a personalized and supportive environment for stroke survivors to explore movement, mindfulness, and healing. With dedication and support, adaptive yoga can empower stroke patients to embrace their journey of recovery with strength and resilience.

Full Interview With Stacie Wyatt

Stacie Wyatt is no stranger to how neurological challenges can impact life. As a mother of a child with a neurological condition from birth, she turned to adaptive yoga to help herself and others.

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(Transcript will be available soon)

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Understanding Brain Stem Stroke: Symptoms, Causes, and Treatment

Brain stem stroke is a serious medical condition that requires prompt attention and awareness. As a life-threatening event, understanding its nuances, symptoms, causes, and treatment options is crucial for both patients and caregivers. In this article, we delve into the depths of brain stem stroke, providing comprehensive insights to empower individuals with knowledge and resources.

Unraveling Brain Stem Stroke

The brain stem, situated at the base of the brain, controls vital functions like breathing, heart rate, and blood pressure. When a stroke occurs in this region, it disrupts these essential functions, leading to potentially severe consequences. Unlike other types of strokes, brain stem strokes can present unique challenges due to the intricate network of nerves and arteries in this area.

Symptoms to Watch For

Recognizing the signs of a brain stem stroke is paramount for early intervention. Symptoms may include:

• Sudden weakness or numbness on one side of the body
• Difficulty speaking or understanding speech
• Vertigo, dizziness, or loss of balance
• Impaired vision, double vision, or difficulty swallowing
• Severe headache, often described as the worst headache of one’s life

Given the critical functions controlled by the brain stem, any suspicion of a stroke warrants immediate medical attention.

Causes and Risk Factors

Brain stem strokes typically result from a disruption in blood flow to the brain stem, either due to a blood clot (ischemic stroke) or a ruptured blood vessel (hemorrhagic stroke). Several risk factors contribute to the development of brain stem stroke, including:

• High blood pressure
• Diabetes
• Smoking
• Obesity
• Family history of stroke or cardiovascular disease

While some risk factors are modifiable through lifestyle changes and medical intervention, others, such as genetic predispositions, require proactive monitoring and management.

Diagnosis and Treatment

Diagnosing a brain stem stroke often involves a combination of medical history evaluation, physical examination, and imaging tests such as CT scans or MRIs. Once diagnosed, immediate treatment is crucial to minimize damage and improve outcomes. Treatment options may include:

• Clot-busting medications (thrombolytics) for ischemic strokes
• Surgical interventions to remove blood clots or repair damaged blood vessels
• Rehabilitation therapies to regain lost functions and improve quality of life

The effectiveness of treatment largely depends on the timeliness of intervention and the extent of brain stem damage.

Empowering Through Education

In the digital age, access to reliable information plays a pivotal role in healthcare decision-making. While websites like Stroke.org provide valuable resources, it’s essential to supplement such knowledge with diverse perspectives and expert insights. By leveraging reputable medical sources, educational materials, and professional networks, individuals can gain a deeper understanding of brain stem stroke and its implications.

Conclusion

Brain stem stroke is a formidable adversary, but armed with awareness, early detection, and comprehensive treatment strategies, individuals can confront this challenge with resilience and hope. By fostering a culture of education, advocacy, and support, we can collectively work towards reducing the burden of stroke-related disabilities and improving the lives of those affected by this debilitating condition.

Through continued research, innovation, and community engagement, we can pave the way for a brighter future—one where brain stem stroke is not just understood but conquered. Let us embark on this journey together, uniting our efforts to create a world where strokes are no longer a threat but a conquerable obstacle on the path to health and well-being.

Full Interview with Jamie & Jessica Robinson

Jamie and Jessica Robinson joined me to discuss their experience with a brain stem stroke from the perspective of both caregiver and patient.

Highlights:

00:00 Introduction
00:30 The first sign of brain stem stroke
09:48 Being in the ICU for 25 days
16:49 Waking up for the first time
18:54 The deficits after the brain stem stroke
27:04 Recovery, work, and voice challenges
38:44 Setting recovery deadlines
45:37 A piece of health advice
50:35 The benefits of having a supportive family during a difficult time
1:03:29 What’s next for Jamie & Jessica Robinson
1:06:25 The three questions

Transcript:

Introduction – Brain Stem Stroke

Bill Gasiamis 0:00
Hello, everybody, this is episode 301. And my guests today are Jamie Robinson and Jessica Pope Robinson. The husband and wife team have been regular listeners to the Recovery after Stroke podcast and reached out recently to join me on the show to share their respective stroke stories after Jamie experienced a brain stem stroke, at age 49.

Bill Gasiamis 0:23
Jamie and Jessica Robinson, welcome to the podcast.

Jamie Robinson 0:27
Thank you. Nice to be here.

Jessica Robinson 0:28
Thank you for having us.

The first sign of brainstem stroke

Bill Gasiamis 0:30
Lovely to meet you both I’m just trying to work out which way to go with this particular interview. But let’s start with Jamie. Jamie, tell me a little bit about what happened to you.

Jamie Robinson 0:43
Well, I think it was November 5, 2022. I woke up in the middle of the night at 5 a.m. with a severe leg cramp and ended up having a stroke in the process. So she called 911. And a few months later, I woke up in the hospital.

Bill Gasiamis 1:15
Wow. Okay. So you recall having a leg cramp? Is that what woke you?

Jamie Robinson 1:20
Well, that’s what she says I don’t remember anything.

Bill Gasiamis 1:25
So do you know that you were having a stroke? Do you know anything?

Jamie Robinson 1:31
No, I just know that I was getting ready to get up for the morning and get ready to go to work. And then I woke up a few months later in the hospital.

Bill Gasiamis 1:43
Talk about dramatic. How was that for you? Jessica, you woke up, was he looking like he was waking up? How was he acting?

Jessica Robinson 1:54
No, it was about 20 minutes before his alarm would go off at about 5:30 in the morning. And I was dead asleep. And he screamed the weirdest scream I’ve ever heard he screamed cramp. But it was just he screamed it in the sight of just a horrible way.

Jessica Robinson 2:12
And I woke up and turned on the light and looked at him, and I kept yelling at him to wake up and he wasn’t waking up. And he was shaking violently. And he has a kind of foam coming out of his mouth. And I called 911 as I was kind of screaming at him the whole time. And then I just kept screaming at him to wake up while we were waiting for the ambulance to get here.

Bill Gasiamis 2:42
Were you trying to get him aroused? Was it working? Was it doing anything?

Jessica Robinson 2:46
It wasn’t doing anything at all.

Bill Gasiamis 2:50
How long did it take for emergency services to arrive?

Jessica Robinson 2:54
Out 10 minutes.

Bill Gasiamis 2:56
Okay. So then there’s a whole bunch of time you go to emergency services arrive, and then from there, did you guys end up in hospital quickly? Is it near home? Where is that?

Jessica Robinson 3:10
Yes, the hospital is about five minutes from our house. So they were there pretty quickly. But actually, I was trying to get my keys and all that kind of stuff and let our daughter know that we were leaving. And when I got outside the ambulance had just pulled away which to me seemed odd because it seemed like it had taken a long time for them to leave. But now I know that it was because they were intubating him in the ambulance before they left.

Bill Gasiamis 3:45
Okay, so they’re going through the whole process. Already his respiratory system is not working properly, things are going wrong. And you’re waiting, thinking, Well, what’s going on? What are they doing? Why aren’t they moving?

Bill Gasiamis 4:03
That’s pretty normal. Because what you’re thinking is that just the hospital is where you need to be and everything will be fine. So you guys arrived at the hospital? And then what? What happens then and how do they keep you in the loop? How are you being communicated with what happened?

Jessica Robinson 4:21
So he has been taken aback. I’m still in the waiting room for about 10 minutes. Then they come out and they get me he’s in a room in the ER with probably, I don’t know, probably 15 people in it. I couldn’t even fit in and I sat on a chair outside the waiting room. And this lady who turned out to be the chaplain I did not know did not introduce herself as she was sitting next sent me the whole time with a box of Kleenex.

Jessica Robinson 5:03
And she kind of when they moved him to do surgery and things she sort of followed and my brain just couldn’t quite grasp what was going on. And I kept thinking, Well, I don’t think this is good that this woman won’t leave me alone. Which was very nice. But I just kept thinking that I’ve been in the hospital many times, and this has never happened before.

Bill Gasiamis 5:28
We’ll be back with my guest in just a minute. But first, let me tell you about my new book about stroke recovery. It’s titled The Unexpected Way That A Stroke Became The Best Thing That Happened: 10 Tools for Recovery and Personal Transformation. within its pages, you’ll discover the journeys of 10 remarkable stroke survivors. Each story illustrates how through resilience and perseverance, they turned their stroke experience into a catalyst for profound personal growth and transformation.

Bill Gasiamis 5:58
This book delves into various aspects of recovery, including nutrition, sleep, and exercise in managing the emotional aftermath of a stroke, as well as providing invaluable tips and tools for maintaining mental well-being. To learn more visit recoveryafterstroke.com/book. And if you’re eager to get a copy, simply search my name Bill Gasiamis on amazon.com. So you just think she’s a weirdo, admit it. Okay, so she’s the chaplain, you find out later, but she’s just trying to make sure you’ve got somebody next to you the whole time.

Jessica Robinson 6:38
Yes, exactly. So I called one of our older kids who worked nighttime. And he got off about seven. At this point, I was about seven, and I let him know what was going on. And he came to the hospital with me. And then, at this point, they had figured out that it was a blood clot. And it was, at this point, I didn’t know where it was located. But they just told me he had a stroke, and it was a blood clot.

Jessica Robinson 7:09
He had a mini-stroke in 2020. And they have put him on blood thinners. Because he was on those blood thinners. They couldn’t do the drugs to break up the clot. So they had to take him up and do surgery. So we went and sat in the waiting room up there, my son and I and his girlfriend, and the doctor came in and said they were gonna go back and do surgery. And they told me that his exact words were that it was in a very bad spot in the back of his brain. And it turned out it was on his brainstem.

Bill Gasiamis 7:57
And what surgery did they do? How did they retrieve that?

Jessica Robinson 8:02
That’s a great question. I’m not exactly sure. I know they just I think where they went up the leg and up there and they were not able to get all of it. But they got most of it. And then when the doctor came in the waiting room, he said that they had saved as much of his brain as they could, which I did not think was a very good sentence.

Bill Gasiamis 8:36
Although they’re trying to tell you, we’ve managed to save some of it. And that’s a good outcome you’re going that means there’s probably a lot that hasn’t been saved.

Jessica Robinson 8:47
Right? Yeah, exactly.

Bill Gasiamis 8:50
So all of this happened. It sounds like this is all the first 24 hours. Okay, and then he comes out of surgery and he’s taken to is it the ICU. Where does he go first?

Jessica Robinson 9:04
He is in the ICU. He was in the ICU for about 25 days.

Bill Gasiamis 9:13
Okay. Now I’ve had the difficult task of being in the ICU with a friend of mine whose daughter had a brain hemorrhage. And it’s not fun, because the condition of the person that you’re seeing is not responsive. You know, there’s a lot of stuff going on in there’s machines everywhere. It’s just an intense place, but it’s a really special place as well. Because if you’re going to be unwell from something like this, it’s the best place to be in for your potential recovery.

Being in the ICU for 25 days after the brainstem stroke

Bill Gasiamis 9:48
And I want to go back to Jamie for a second. In the first 25 days. Do you have any more recollection whatsoever? Is there any time when you felt maybe you saw the lights, as in the lights of the room, not the other ones? Did you have any idea that you were in the hospital and something was going on?

Jamie Robinson 10:14
It was so weird because I could hear conversations that were going on around me. I could follow what was happening in people’s lives. But it just kind of blended into the dream that I was having. Because for the whole time, I was in ICU. I was unconscious as far as I know. And I was having a dream where I was living a whole nother life. And day by day I listened to the stories that other people told, listened to stories about my mom needing an internet. And it just all blended in.

Bill Gasiamis 11:01
Okay. So you had some kind of awareness of conversations happening around you people turning up and things getting done and things happening around you. Jessica, were you guys telling him the stories of what his mom needed and all that type of stuff?

Jessica Robinson 11:21
No, his mom would just be in the room telling me what was going on. Because she just moved into a house and we’re just having kind of conversations. And apparently, he heard them.

Bill Gasiamis 11:33
Yeah, they didn’t say anything nasty, did they?

Bill Gasiamis 11:41
Well, we know better from now on never to do that in the ICU. Okay, so it kind of blends all in. And there’s no real understanding of how long you’re in there of really what’s going on what day it is, you just know that you’re somewhere else and something is happening around you. And you’re able to track it. Are you do you have any concerns? Do you feel, any feelings? Are you worried? Is there any other of that stuff going on? Or is it just not there?

Jamie Robinson 12:13
It’s not there. Like I said, during the whole time that I thought I was unconscious, I was having a dream, where I was living in another reality. But she says it now and then I come to and communicate somehow. But I don’t remember any of it.

Jessica Robinson 12:37
He was never unconscious after he got into the ICU, like when I got in there to visit him. He was awake, and they had told me when they came to the waiting room that the next 24 hours were key and that he hoped he wake up. And by the time I got into the ICU, he was awake, his eyes were open, and he was able to follow basic like, you know, squeeze my hand with all your toes kind of directions.

Jessica Robinson 13:15
His left side was affected. So that wasn’t as good as the right side. But he was able to follow those sorts of directions. So he was never really unconscious. I mean, he was intubated. Still, he was intubated for a very long time. So, they had him on medication. So they make him comfortable.

Bill Gasiamis 13:39
Okay, so it’s important, of course, after the surgery to work out, that he’s come good and that Jamie is there and things are working amongst other things that are not. But then at the same time to allow for the situation to continue in the process of recovery to continue to occur. He was intubated so that he didn’t have to worry about doing things like breathing, etc. And then he was sedated to just keep him comfortable and keep him healing. Then when long enough time passed, he could be sort of woken back up completely.

Jessica Robinson 14:28
Right. So they had him intubated for just the first day I think and then they took the tubes out and he had about 24 hours without them he could breathe on his own but he couldn’t cough. So fluid was building up and he was very, very weak and so his coughs were very, very, very weak.

Jessica Robinson 14:54
And he just couldn’t keep the fluid down. So they went ahead and put the tubes back in. And then he was intubated for another, about two weeks. And then they told me that they were going to have to, they took the tubes out again and tried for another 24 hours, and he could not do it. And they told me they were going to have to put in a trach.

Bill Gasiamis 15:23
In those 25 days, what are you guys doing? Or what is your routine? Like? How are you managing your day?

Jessica Robinson 15:33
It’s pretty much just at the hospital all the time, we have three teenage girls. So there was a lot of, you know, them staying at my parents or my parents staying here with them, or, his mom was in town, so she would spend the night at the hospital occasionally.

Jessica Robinson 15:53
And then if she wasn’t staying the night, I would stay the night, when we got to probably about three weeks or so after the stroke, we would go a night or two without staying the night. But not the first few weeks and they took good care of it. him it was just very hard to leave him.

Jamie Robinson 16:12
So we had really good doctors.

Jessica Robinson 16:16
And nurses, the nurses, and all the staff. Amazing. Yeah.

Bill Gasiamis 16:21
Yeah. They certainly do look like they did a good job because you guys are both here on the podcast talking about it. So let’s say, Jaime, are you able to tell us anything about those first few days after the sedation is sort of starting to decrease? And then all the breathing tubes are removed? Are you able to have any memories of that?

Jamie Robinson wakes up in the hospital for the first time

Jamie Robinson 16:47
Well, when I woke up, I went and had a stroke on November 5. I woke up on December 17. And I couldn’t move my left arm, I could barely move my fingers. I could barely move my left leg. And I was trying to figure out what was going on. I was just why am I in the hospital. I’m trying to figure out why is everybody here. And I wasn’t scared. I was just confused.

Jamie Robinson 17:24
And then I started to get more and more information from family members. And my son was a little freaked out. He’s tudies up on everything. He gets introduced to something, he finds out everything he can about it. So he was very concerned. And then when I woke up, he was very relieved. So it was a challenge but not scary It was just like, what’s going on? The confusion.

Bill Gasiamis 18:01
And how did the family take it Jessica when he’s awake? And he started to communicate?

Jessica Robinson 18:08
Oh, it was a lot of relief. Just to know that he was still in there. And although he’s still, you know, couldn’t talk well, at first because of the trach and everything. Um, you know, he still had a sense of humor, he still was very similar to himself, our daughter mentioned that when she got to the hospital that first day everybody kept telling her that he was going to live.

Jessica Robinson 18:40
And she said I kept thinking, Oh, well, that’s great, but I don’t want to just live I want him to be my Dad, is he gonna be my dad? And so she was very relieved that she could see that. Although there have been some changes he is still himself.

The deficits after the brainstem stroke

Bill Gasiamis 18:54
Yeah, personality-wise and the way that you go about talking and thinking, etc. Okay, so what is different? We know the left sides have been impacted. To what extent is it still impacted?

Jamie Robinson 19:12
Well, I don’t have full control of my left arm yet, but I do move it quite a bit. Now. I can walk by myself without a cane. But I take a cane just in case. My mental faculties are there. But now and then I have a loss for words like now and then it’s just like, it’s on the tip of my tongue. I just can’t think of what it is. It should be something dumb like yellow.

Intro 19:49
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 20:14
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you it’s called Seven Questions to Ask your Doctor about Your Stroke.

Intro 20:33
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.

Jamie Robinson 20:52
I seem to be a little more patient with my kids. I used to be a real hardass, I used to be a little more stubborn and demanded more respect and now it’s just like they get away with everything.

Bill Gasiamis 21:17
Yeah, I wonder why I’ve been there. I know what that’s like, it’s settled to sort of take the edge off that kind of shitty part of your personality and to just settle it down a little bit. You don’t know when you’re doing it at the time. But it is, you know, grinds people the wrong way.

Bill Gasiamis 21:40
And it just makes things a little bit uncomfortable on that. And then you realize, okay, maybe I can just settle down and just be a little less dramatic about things. So it was about 25 days, all up in the ICU. How long were you in rehab? Did you come home quickly? Or were you in rehab for an extended amount of time?

Jamie Robinson 22:05
25 days in ICU, about a month, and immediate care. And then about a month in rehab.

Bill Gasiamis 22:17
Wow. So isn’t it strange, like that day is supposed to just be a normal day? Everyone wakes up and goes to work. And then like three months later, that day still hasn’t ended? It’s just still, yeah, we strange thing that’s just working one day you wake up, and then three months later, you’re in this completely different place? How quickly did the time go by Jessica?

Jessica Robinson 22:44
Oh, gosh, um, in some ways, I think it felt like it went by fast. Because it just felt like it was just one very long day. I mean, it just woke me up. It was kind of like Groundhog Day, you just wake up and do the same things over and over again, you know, took an I took a leave from work and so it was just getting up, go to the hospital.

Jessica Robinson 23:10
And you know, and there were quite a few times when we got thrown off like after he was in an intermediate care, I forgot the ICU, everything was going better. And then he had a pulmonary embolism. So we had to deal with that. And that was scary. And then once he got to rehab I think it went faster because you can see the the improvement every day.

Bill Gasiamis 23:42
So how did the pulmonary embolism come to be?

Jessica Robinson 23:46
So well, that they had they put him back on life and put him on blood thinners a few days after his stroke. And then, um a week or so later, they felt like something was wrong. So they did an MRI and he was bleeding where his stroke was. So they took him off the blood thinners.

Jessica Robinson 24:11
And then he developed a DVT and that ended up being a pulmonary embolism. Multiple pulmonary embolisms as they said but they were able to just dissolve on their own. So then it was very scary because they came in and said we are worried that if he put him back on the blood thinners that he will bleed we are worried that if we do not put him back on the blood thinners that he will develop clots because he’s prone to clots.

Jessica Robinson 24:51
So there was I mean I had teams of doctors in the room talking to me different teams and The stroke team said we think he will be okay on the blood thinners, the hematology team so we don’t want to put him back on the blood thinners. And then they said, you have to make a choice.

Jessica Robinson 25:14
And that was probably one of the scariest moments of my life trying to figure out, you know, having somebody else’s life basically in your hands, not knowing if you’re going to make the right choice. But the stroke doctor convinced me that he thought we try the blood thinner and check him for blood bleeding. And because at this point, it had been about a month almost exactly since his stroke.

Jessica Robinson 25:40
And he thought that he was strong enough at that point, that the bleeding would stop that the blood thinner wouldn’t cause the bleeding, I should say. So. And that that did it they he went back on the blood thinners and he’s been on him ever since. So there was no bleeding.

Bill Gasiamis 25:58
I love the passing of the buck routine. There are medical professionals, they’ve got, you know, probably 1000s of years of education and schooling and experience in that space. And they go you know what, let’s just give it to somebody who doesn’t know anything about strokes. Like the decision.

Bill Gasiamis 26:18
I mean come on guys, I get what they they just sort of saying like, Wait, somebody has you have to guide us, you have to probably do the what are they thinking is maybe you’re going to do the what is your family members? The most likely response going to be? What would they want? And they’re hoping that you guys can guide and advise.

Bill Gasiamis 26:46
That’s interesting that they do that, that they make your decision, they should be able to just make the decision and then come to you with a suggestion. The most likely outcome in this scenario is the most likely outcome in that scenario. We are going to go with this. Do you agree with us?

Bill Gasiamis 27:04
Yeah, so, Jamie, what’s it like when you realize you can’t move your left side properly? And it’s not working? And then how to your, what are your thoughts about what’s next going to be necessary to get you back on your feet? Again? How are you thinking about all of those things?

Jamie Robinson 27:31
Well, the initial thought was, man, this sucks. I tried to lift my hand from the bag and put it on my leg, and then just wouldn’t move. So it’s just a battle of wills, almost a test. If I just give my hand to the rest of my leg, I’ll be good to go. So then at that point, I started realizing it was just day by day. If I can’t do it today, I’ll do it tomorrow. And now a year and a half later, I’ve been blogging for the most part, I walk around the house with no support. And it’s just taking time and it’s a struggle, but it’s it is a challenge. But it’s worth it.

Bill Gasiamis 28:24
What kind of work were you doing before?

Jamie Robinson 28:28
Before the stroke, I was in grocery pricing. I was a pricing manager for grocery and so I’m the one you blame for probably stopping being too expensive.

Bill Gasiamis 28:45
Okay, I know where to send the rage. Okay, so you’re it’s an administrative type of job sitting down at the computer, looking at spreadsheets or that type of thing. Where are you at with work? Are you in any situation where you’re able to go back to work or do work like that?

Jamie Robinson 29:07
Well, I had I had just come up and come away from cancer. And so I was still on. I still had some time left for Medical Necessities for that. So whenever I had a doctor’s appointment or something going on, they were charged against the FMLA time the light left. So when I had the stroke I had a good strong support team in the office with me I was worried about that. And then the stroke in the hospitalization ate up all the FMLA time and then I was terminated.

Bill Gasiamis 30:00
What is FMLA? stands for?

Jamie Robinson 30:02
Family Medical Leave Act.

Bill Gasiamis 30:06
And you had a cancer scare. So what was that all about? When did that start?

Jamie Robinson 30:14
What was it in September?

Jessica Robinson 30:16
It was in like, May of 2022.

Jamie Robinson 30:21
They found a cancerous node on my lung and then wound up doing chemotherapy, and they cured it.

Bill Gasiamis 30:31
Okay. Were you a smoker?

Jamie Robinson 30:36
30 years.

Bill Gasiamis 30:38
Okay, so I guess you’re not a smoker now?

Jamie Robinson 30:42
No.

Bill Gasiamis 30:46
I can’t believe you had to point to her. She shouldn’t be the one who’s like smacking you on the head with a wooden spoon to make sure you stop smoking. What you’re telling me is that it was one of those things that you did, which is quite enjoyable, which you liked doing. Didn’t bother doing it right?

Bill Gasiamis 31:08
I know that feeling because I enjoyed smoking too when I was smoking. And of course, that one had to make me stop after the first brain hemorrhage I just stopped. But I know what you’re saying. I mean, it’s not that you’re being forced to stop. It’s that you’ve finally become aware of how bad it can be.

Jamie Robinson 31:30
Well, I know it’s bad. I know it helped cause it.

Bill Gasiamis 31:42
So tell me about your voice. It sounds like it’s a little bit labored. Is that a result of the tracks? Why does that sound like that? And is it very different from what it used to be?

Jamie Robinson 31:57
Yes, it’s different, but it’s not so much forced is just, that I’m getting used to it, the muscles are growing back and getting stronger. So I’m getting back in shape as far as that goes. For a while when I woke up, I couldn’t speak at all, at the trachoma through sign language and communicated with writing stuff on paper. And I couldn’t even drink soda. I could, I had a hard time swallowing. So if I had a cheeseburger or something, I had a chance to choke. So all that’s been gradually getting better. And now I’m having a soda. I opened Oh cans and drank away now. I graduated from speech therapy. Did all these speech practices for me, and I just kept working on it. It’s my voice getting better. It’s much better than it was back in the day, but it’s nowhere near what it was before the stroke.

Jessica Robinson 33:20
He had he couldn’t swallow for well, from ICU up until like, probably the middle of rehab. So two and a half months, he was on a feeding tube and couldn’t swallow. Then they did testing and everything and they put him on by the time he left the hospital. He was on a solid food diet, a normal food diet. Yeah, normal food diet, but he had to have all of his drinks thickened. And he had to have all the strings sticking up until September 2023. And that’s when he was able to start drinking normal liquids.

Bill Gasiamis 34:09
Okay, so it’s been a gradual improvement, slow, but gradual, and then eventually you’ve achieved some decent outcomes. Do we know why the blood clots occurred? Like what is the underlying cause? Is he susceptible to them? Why is it? Do we know?

Jessica Robinson 34:31
They don’t know he didn’t have a, he had a spleen removed when he was like seven. And they told me in the hospital, they went back and forth for a long time trying to find a cause. They finally thought that because he had his spleen removed because his blood cells are kind of an odd shape and the spleen would eat them. Mopping it will make it enlarge.

Jessica Robinson 35:02
And they finally decided that maybe the disease he has makes them that odd shape. Might also be very rare though they don’t know a lot about it, it would also possibly make them sticky and sometimes cause flooding. That coupled with the chemo, because he had just finished chemo in August. And after he finished chemo, he had so much swelling.

Jessica Robinson 35:32
He had a doctor’s appointment. Gosh, like, he had a stroke on a Sunday, and he had the doctor’s appointment on a Thursday for the swelling. And she had a CT scan done. And she sent him a message on his Follow My Health that I received while he was in the hospital, on his app that the CT scan looked good. And he was okay to just continue what he was doing. And I sent her a message back and I was like, well, he had a massive stroke. And he’s in the hospital ICU. So I don’t know, but it didn’t seem like it went that well.

Bill Gasiamis 36:21
Poor Doctor. I mean, she was beside herself thinking what? What am I? Yeah, but as far as she was concerned, everything else went to plan. Yeah.

Jessica Robinson 36:36
And at least he did have that moment where we know that there wasn’t something we should have done differently. You know, like, Oh, if you’re just seeing a doctor before this happened, at least we know that we did. You know, well, yeah.

Bill Gasiamis 36:54
Somebody’s getting tired.

Jessica Robinson 36:57
My legs are starting to hurt a little bit.

Bill Gasiamis 37:00
So we’ve got everything’s sort of going well, making a lot of progress. Worked out a lot of things and resolved a lot of issues. Your 49 When it happens, when was your 50th?

Jamie Robinson 37:17
I got released from the hospital. And was it February? And my birthday was in June.

Bill Gasiamis 37:25
June the what? June 19. On June the eighth. Oh. And I’ll be 50 this year. Oh, how good was it to get to 50 why it was

Jamie Robinson 37:42
it was very enjoyable. I had a lot of friends over. And we had a big party. And I was stuck in a wheelchair at that time. But it was a very fun event.

Bill Gasiamis 37:57
Yeah. So what’s it like now, for you, Jessica, have you been able to get back to work is everything kind of settled down with that side of it?

Jessica Robinson 38:06
Yes, I’m back to work. He still needs 24/7. More of a supervisor than a care but 24/7 supervision because he is still stroking. He’s still a choking risk. Sometimes he’s still choked. So someone has to watch him when he’s eating. And then he’s also still a bit of a fall risk. So someone has to be 24/7. So my parents come during the workday when I’m working and stay with him.

Setting brainstem stroke recovery deadlines

Bill Gasiamis 38:44
He’s high maintenance. Jamie, what’s the deal? Might, how long is it going to be before? Do you feel like I know you’re improving and you’ve hit all these milestones? How long do you feel before? And this is not a goal that you have to sit in and hit I’m just sort of seeing where you’re at with it. How long do you feel before you can be fully independent and you don’t need the babysitting, so to speak?

Jamie Robinson 39:11
Well, everything is going according to plan so far, but I don’t know. It’s just I still can’t walk very well. I still have problems with my left arm. I still have stuff I’m working on. But I was told that while I was in the hospital, I was told that for every day that you’re in the hospital imagine three days of recovery. So according to that, everything went fine. By about the time I had three days of recovery, for every day I was in the hospital was up. About nine months, 10 months, I was doing much better. I still think I’ve got probably a year to go before I can get back to work and start being, “normal” again.

Bill Gasiamis 40:31
Yeah, whatever that means. Okay, it was a trick question. I mean, I knew there wasn’t going to be a solid answer. But there’s a reason for that. Because there’s a lot of people listening, who will have kind of deadlines set on I need to get back by this day, or this is the day or whatever. And usually what happens is recovery doesn’t go like that. And it takes a bit longer. Sometimes it could take less, but it might take a bit longer than what we want it to.

Bill Gasiamis 41:00
And people get disheartened. They feel a little bit kind of, you know, like, oh, man, I’m gonna be here all the time. And you know, they might start thinking like that. You seem to be taking it all in your stride. Have you always been chill like that? It seems like you’re very relaxed and chilled about it. Jessica’s shaking her head, and you’re nodding your head. So somewhere in between is the truth. How have you responded to adversity in the past?

Jamie Robinson 41:33
Usually, I’m like a crisis manager, I see the crisis. And I tag it head-on, whether it be strategically or forcefully, or just whatever is going to get me through it. Nowadays, like I said, it’s day by day, if I can’t do it today, just wait tomorrow and try again. The three days per recovery, three days recovery for every day, is more of a benchmark than anything.

Jamie Robinson 42:15
Just look at it, I want to be better by this time. And then you look at your progress up to that point. And you can push yourself to do better. And then you know where you’re at, and how much gotta work to get further. Me. I know I’m not ready to be on my own. I know I need people to help me. I know I need people to watch me that’s okay. , I go to the gym three times a week. I walk on the track in the gym three times a week. And when I say a walk in the gym, I’m carrying my cane not use not holding on to, to the guide rails just had their writing experiences, just the case. And I pushed myself to go for a mile. And I think it’s working out well.

Bill Gasiamis 43:16
Yeah. Sorry to interrupt you.

Jamie Robinson 43:22
That’s okay.

Bill Gasiamis 43:24
Yeah, you’re going well. So you’ve just sort of focused on the improvements that are happening, rather than how much improvement you want to see by a certain day.

Jamie Robinson 43:37
Right? Am I doing better than I did yesterday? Yes. Okay. I’m on the right track. Am I doing better than I did yesterday? No, I need to work harder. That’s all about day by day. What can I do the day? How much can I push it for tomorrow? How Where do I see that little bit of improvement? And that little bit of improvement every day will add up. I started doing a row machine that uses just your arms. Started at 90 pounds. That’s pretty good. I’m now up to 125. And it’s every day every time I go and try it. I add five pounds. And there’s too much that’s okay, our with what I’m used to. And I’ll just keep working it keep working. Just keep trying to do better.

Bill Gasiamis 44:40
So you’re getting stronger. You’re getting more resilient, you’re able to get through more effort. Are you noticing fatigue, does that sit in does that cause a little bit of a backstep

Jamie Robinson 45:00
I don’t see it as a challenge. That doesn’t affect me as much. One thing that I’ve heard from a lot of people, doctors, patients, everybody is that they have a lot of pain or are very tired. I got lucky. I don’t, I don’t notice it. I’m not in pain. I’m not tired unless I push myself. But I’m just very lucky where I’m at right now.

A piece of health advice for faster brainstem stroke recovery

Bill Gasiamis 45:37
You’re looking for ways to improve all the time and you’re making big progress and you’re overcoming things. In our conversation, I noticed something that you’re doing that’s interfering with your recovery you want to know?

Jamie Robinson 45:59
Please share.

Bill Gasiamis 46:01
Drinking sodas.

Jamie Robinson 46:03
Okay. In my defense, it’s sugar-free.

Bill Gasiamis 46:10
Even then.

Jamie Robinson 46:16
I started when I was young drinking Mallow Yellow, I then moved on to Mountain Dew, Mountain Dew has like 75 grams of sugar with, whatever. And it was ridiculous. I changed from that to Pepsi. As that cut down quite a bit more since I’ve been able to drink soda again, I dropped down to zero sugar and started to lose weight, but it’s not helping a whole lot because it tastes good.

Bill Gasiamis 46:55
Yeah. I know it’s always about the taste. That’s the only thing that I could say to you, you know, that Sunday, that’s not going to cost you extra, it’s going to make a massive difference to your blood. Instead of drinking a soda if you drink water, or bubbly water, like mineral water or soda water, you know, the flavors are different squeeze some lemon in there, squeeze some orange in there, anything just to get you that feeling that sensation of you’re doing something similar that that will help.

Bill Gasiamis 47:29
It’s just there are too many chemicals in those diet ones, and they don’t have a positive impact. They may have a negative impact, but they certainly don’t have a positive impact. Drinking water is going to have a positive impact and help thin your blood naturally. And just take out some extra stuff that your blood doesn’t need to have. So anyway, that’s my 10 cents worth that’s your nutritional advice for the day.

Jamie Robinson 47:56
That’s quite alright, Jess has been trying to get me to drink more water for years.

Bill Gasiamis 48:05
Yeah, well, we, you know, if it helps, you know, what you do, is you get a water filter, you filter out all the stuff that you don’t like in the flavor of water from the tap. And then you just add, like I said, a little bit of lemon or orange or lime or anything in there just to help you make a tasteless water, boring, I don’t know, whatever it is, it’s the most important thing.

Bill Gasiamis 48:31
Because you can extract you know, with blood cells that are differently shaped they need water, they need to be hydrated in different ways. You know, they don’t need to be hydrated by beer or sodas or anything like that. They need they need water especially since you know you’re still not active, very active, and that you need to help your blood circulate as much as possible so that you don’t develop DVTs or any of that stuff from sitting down.

Bill Gasiamis 49:14
Because I know that there’s a risk of sitting down a little bit too much, especially then when we’ve been unwell after a stroke, you know, so just consider it and maybe you know, cut down from whatever you’re drinking now to half of that and then see if you can make your water tastes a little better and then go from there. And you’ve also been through cancer.

Bill Gasiamis 49:37
You know, you want to give your body the best opportunity to repair itself and heal itself. And Jessica he’s very high maintenance, like we said, but he also needs a lot of attention by the sound of it. He’s doing all this getting attention. Oh my God. Is there any opportunity for anyone else in that house to get a little bit of life? How have the girls been I hate teenagers can be completely annoying at the teenage stage.

Bill Gasiamis 50:13
I had teenagers when I was unwell. And they were just painted as they were meant to be. And it didn’t make it easier. But I was also able to just chill out and say, look, they’re just being normal, and they won’t understand and I shouldn’t expect them to understand. But I used to get a little bit upset when they were a bit too loud.

The benefits of having a supportive family during a difficult time

Bill Gasiamis 50:35
And I had to tell them multiple times, or when they wouldn’t help out around the house, and I needed help because my wife went back to work. So if they were around and causing a mess, or creating you know, a nightmare in the kitchen, you know, I needed them to be on top of sorting out their stuff. And Sometimes they wouldn’t how the girls respond during this time.

Jessica Robinson 51:00
They’ve responded pretty well, I’m there’s that there’s, you know, messes and, and things like that. But for the most part, they’ve been very helpful.

Jamie Robinson 51:13
They have I’ve got two 15-year-old twins, who are very helpful. They still complain when we ask them to do something. But they get it done, they’re trying to be as helpful as possible for me. And my 18-year-old daughter is still living home washers in high school. And she’s studying EMT right now. And she’s wanting to be a physical therapist. So she’s gotten a lot out of this negative experience.

Jessica Robinson 51:55
Yes.

Bill Gasiamis 51:56
Did she want to be a physical therapist beforehand? Or did it sort of start to give her some idea of what a good career might look like?

Jessica Robinson 52:08
No, she, I don’t think she had any idea. I mean, she was kind of considering the medical field of some sort. But I don’t think she had any idea about therapy really, at all. Until she saw firsthand. I mean, he had, gosh, like five months in home therapy when he got home. And when he got home, he was in a wheelchair and could only transfer with the sitting board. And we had all those therapists and all the time, and she got to see all that firsthand. And I think that made a huge, huge difference.

Bill Gasiamis 52:43
Your life is on hold, Jessica. How’s that been? Now? Is it Have you been able to sort of transition back to a routine? Do you feel comfortable? Being? Not around as much? What’s that, like, on your mindset?

Jessica Robinson 52:59
That’s a good question. Ah, yeah, I think getting, you know, back to work normally, and all that was, is helpful. And we’ve been able to get on a fairly good routine. I mean, it helps that nal personality is easygoing, and things like that. And we don’t have you know, a lot of issues. I know, sometimes that stroke, kids have a rough part of the brain. And sometimes people get kind of short-tempered and things and that that didn’t happen. So yeah, I think we’ve gotten back to a pretty normal routine.

Bill Gasiamis 53:43
Yeah. And what does that look like for you to work in the morning? How does that go?

Jessica Robinson 53:48
I go to work at nine. My parents used to get here about four 845 in the morning, I only work a block and a half away. So I go to work. And then I come home for lunch at noon, and I have an hour’s lunch, and then I go back to work and I come home at 4. Yeah, it’s perfect.

Bill Gasiamis 54:12
And do Mum and Dad live close by?

Jessica Robinson 54:15
They live about half an hour away. Okay.

Bill Gasiamis 54:19
And are they retired?

Jessica Robinson 54:21
They are.

Bill Gasiamis 54:23
How good are the inlaws? You probably never expected them to come and be your babysitter.

Jamie Robinson 54:32
They’re very good. They’re very attentive, they take care of me, they get me to the gym, and they take care of me when I can’t take care of myself. When I got home. I was in cognitive and had other problems and they were there still to help me get dressed, help me change clothes, just everything they’ve been very good people.

Bill Gasiamis 55:08
That’s one son-in-law who can’t say negative or bad words about your inlaws you are not allowed my friend, you cannot say anything. It’s so good that you guys have that ability to have your family close by and being surrounded by them was one of the benefits. That’s what we had. My brother lives 10 minutes, in one direction my parents live 10 minutes in the other direction.

Bill Gasiamis 55:38
My sisters-in-law, everyone’s kind of within 10 minutes of each other. So every time we needed something all we had to do was reach out or people would die all the time and help out. And it’s just such a benefit. Every once in a while you hear people and you know, being nearly 50 people asked me like, Where else have you lived and I’m like, I haven’t lived anywhere else.

Bill Gasiamis 56:04
I moved three kilometers away from my original home to my current home. I’ve done it my whole time. And the same with my family, no one’s moved anywhere. Everyone sort of stayed nearby to where they grew up. And their families. And it’s just been a bit of it’s been a blessing because we don’t have those villages anymore. I barely know my neighbors I’ve been I’ve been here for 20 years, they switch in and out.

Bill Gasiamis 56:32
So you don’t often get to meet everybody and create a relationship with them. So even though I could be I do feel like I could go to a neighbor and say, Hey, can you help out with something for a minute, I know that I would probably get that help. But I didn’t need to because everyone else was around me. And then a lot of stroke survivors don’t have that benefit.

Bill Gasiamis 56:53
But it says something about, you know, finding a place and putting your roots down and then just sort of staying there. I think getting to know the community in my local cafe, for example, when I go there, I know everybody, and they know me. And they would even be the type of people who would help. I remember during lockdown in Melbourne, Australia, we had the worst lockdown in the world.

Bill Gasiamis 57:15
During COVID, we weren’t allowed to leave the house if we thought that we had a cold, the COVID or whatever. And, to do the right thing and make sure that they were able to keep their Cafe open and keep it running. Keep serving the community. If we thought we had COVID, all we had to do was send them an SMS and say Hey, can you bring us four coffees, some croissants, etcetera.

Bill Gasiamis 57:43
And that would walk the 700 meters down the road and bring it to us. So you know, there are a few people like that. But with our family, we were able to rely on, we’re able to rely on them for everything. And I got driven around and I got all those favors done. And it’s just it takes one of those layers of the difficulty of strike like it sort of just takes it away. Gets rid of it. Were you both insured? Did you guys have health insurance at the time when you went through the cancer and the stroke?

Jamie Robinson 58:26
Yeah, I had insurance through my work. And it was a really good insurance. So they covered the cancer very well. But when I when I had a stroke, they wind up coming in very handy. And we’re thankful very much we had it. And we got.

Jessica Robinson 58:54
We had a critical care, policy so that helped out a lot where he had a critical care policy on his insurance.

Bill Gasiamis 59:02
I hear a lot about insurance where it’s supplied through the employer. And often when people become made unemployed, their insurance lapses. Is it too expensive to buy insurance? Just on your own and have your insurance policy? Do people do that?

Jamie Robinson 59:26
Yeah, you can. You can even find a cheap and expensive policy that’s just saying 10 bucks a month. But the ones offered through work. You don’t have to shop around and it’s taken out of your paycheck so it’s easier.

Jessica Robinson 59:46
And a lot of the cheaper policies aren’t going to cover that you’re gonna if you have an if you have an emergency like this, you’re going to be in trouble because they’re not going to cover it very well. Um, now when he Even his employment was terminated. Then we had to do what’s called Cobra. So you have your insurance, but it’s, um, you have to pay, you’re paying it yourself.

Jessica Robinson 1:00:16
So you’re paying your employer’s part of it as well. And it’s extremely expensive. But we did keep that for about six months, even though it was about $1,000 a month. But we kept that for about six months because it was its pay it pretty much covered everything.

Jessica Robinson 1:00:37
And he, we were would have been able to get onto a state insurance policy, which is what we ended up doing. But the state wouldn’t have covered the home health care that he had. So we kept it until he went to outpatient therapy, and then we were able to switch to that and not have to pay anything.

Bill Gasiamis 1:00:59
Do those work policies cover the family as well for other medical conditions? Or is it just a person who is employed?

Jessica Robinson 1:01:08
In our case, you can get it so that they cover the whole family. In our case, we did not do that we had a a different policy through the government, for the family, because it would have cost quite a bit more. So, his policy by himself was just 200 hours a month while he was employed there. So

Bill Gasiamis 1:01:32
okay. So you had the benefit of coming out of the hospital and not a massive bill that some of the American Stroke Survivors talk about that ridiculous they do to people after they’re unwell and not able to work and go home with a six. It’s ridiculous. So what’s it like now, being able to I imagine, Jamie’s still not receiving any income, it’s been a bit of a juggle is it changed the way that you guys have to go about living your life, expenses, everything’s going up, how’s that?

Jessica Robinson 1:02:16
He’s on disability now. So he does get some income through that, but it is quite a bit less than what he got when he was working. So yes, we have had to, like, cut down on some expenses and just change the way we spend.

Bill Gasiamis 1:02:38
Yeah, we were the same. I mean, my wife was working three times a week when I wasn’t able to work. And I haven’t been able to work properly for 10 years. Because of all of the stuff that I had to go through, and then to get back to work, and then COVID, lockdowns, and all that type of thing. So it’s a massive adjustment.

Bill Gasiamis 1:03:00
We’re not going without anything, but still being super cautious of over-committing to something that we don’t 100% need or you know, we can do without it’s interesting stroke takes a lot of time for things to settle down, and get into return. And then for some people that return often then doesn’t involve doesn’t involve employment.

What’s next for Jessica & Jamie Robinson

Bill Gasiamis 1:03:29
So it’s a very different experience to what we used to previously. So what’s next for you guys? where to from here? Jamie, what are you thinking? I know you gave yourself about a year or so. But what else is on your mind? What else would you like to accomplish and achieve?

Jamie Robinson 1:03:54
Physically as far as physical therapy, I had certain goals that I was trying to meet. And I want a meeting. One of my goals was to climb stairs by going into a friend’s basement. And I made that goal possible. And I’ve been able to do it. So because of that. I go and hang out with a friend every week.

Jamie Robinson 1:04:23
So my son comes over picks me up, and they will draw to a friend’s house just hanging out for a couple hours. And that is it’s feeling like I’m getting back to normal. As far as about a year from now. I’m dying to get back to work. I just want to get out of the house away from Netflix. Just do something. I want to go back to stockings back to a mind-numbing and no-thinking job. So that’s what I want to do.

Bill Gasiamis 1:05:00
That’s a good one. For about three years I went back to a mind-numbing, no-thinking job as well. Everyone had it all sorted for me to do this. Once you’ve done that, let me know. And do this. Oh, man, that was so good for a little while. Until then eventually, I realized I had recovered enough. And I was beyond that because then it was mind-numbing was annoying to me.

Bill Gasiamis 1:05:24
And I was complaining because it was mind-numbing, oh, this is boring. But it took about three years to get there. And having somewhere to go and interacting with people was good, especially regularly in the office, that type of thing. That was good. What about you, Jessica?

Jessica Robinson 1:05:50
To see him keep getting better, I think I’d like to see him be able to drive at some point. I don’t know if that’s in the cards, but it’d be something that I think would just be important for him. But, I mean, to be honest, I never imagined we would be here. It was too hard for me to see beyond where we were at the time to see that this was possible. So I’m just ecstatic about where we’re at.

The three questions

Bill Gasiamis 1:06:26
Normally, I don’t ask caregivers, because they’re very rarely on my podcast, I don’t ask them this question. But I’m gonna ask you both the same question, see if you can give me your version of the answer. So, Jessica, what’s the hardest thing about stroke for you as a caregiver?

Jessica Robinson 1:06:43
I think the hardest thing for so long was that I felt alone. Just he was he wasn’t the same, he wasn’t able to, you know, make decisions. I’m we were always a team, and we always made all of our decisions together. And having to make all the decisions without him being able, to help was very difficult. That has gotten a lot better. And you know, still not, you know, 100%. But it’s, it’s a lot. It’s a lot closer to what it was.

Bill Gasiamis 1:07:29
Jamie, what’s the hardest thing about the stroke?

Jamie Robinson 1:07:33
Well, I think it’s the fact that everything changes. One minute, I’m perfectly fine. And everything’s going good. I’m walking like normal talking like normal, playing video games. And then the next day, I can’t do any of it. So it’s just that gradual getting back to how it was before the stroke. That’s the hardest. Just have to deal with the “disability” that I have. I’m not disabled, but I can’t move my arm, I can’t move my leg, I think right. Just getting back to how I was, it sucks.

Bill Gasiamis 1:08:29
Jessica, what is something that you’ve learned too, because of this stroke journey?

Jessica Robinson 1:08:41
I think one of the things that I learned is gentleness. I mean, I’d like to think that I’ve always been a very kind person, but I haven’t always been the most gentle person. And I think that’s really what I’ve learned the most is how important it is and how not important some of the things that I used to think were important were.

Bill Gasiamis 1:09:10
Old habits die faster, don’t they? I mean, I had all of those awarenesses about stuff and it’s like, Alright, you’re being ridiculous. Again, you’re complaining about something you should be complaining about. You find yourself there, you’re human, right?

Bill Gasiamis 1:09:28
And you’re still a married couple and you still have the same dramas and even though you promise I swear once everything gets back to normal we’ll never argue. You always go back there sometimes, but it’s alright. I’ve learned that you can go there and then just become aware of it quickly and then go okay, out of there. Get out of there. What about you, Jamie, what’s something that you’ve learned because of the stroke?

Jamie Robinson 1:09:56
Probably taking it day by day Instead of planning for the future, just get through the day you’re in, whatever challenges come up, take them on one day at a time, whenever you can do plan the next step, just one step at a time. And don’t be a pessimist just keep going. I can’t do it right now. That’s okay. Maybe tomorrow I can, and then just keep going. Just keep working harder. So day by day.

Bill Gasiamis 1:10:43
Jessica, what’s something that you would like to tell perhaps another caregiver who might be listening to this, like a little bit of wisdom or some advice or something that might help them in their journey, especially if they’re just starting theirs?

Jessica Robinson 1:11:02
Ask for help. You feel like you’re going to be a burden on somebody, but people do want to help. They just don’t know what to do. So if you know, dinner will help just ask someone to bring you dinner. If you can think about food, then that’s something you know, just ask for what you need. Because people want to give it to you. They just don’t know what to do. So they just sometimes don’t do anything.

Bill Gasiamis 1:11:34
I think that’s great advice. And it’s not doing anything that looks like they’re being not nice, or they’re being insensitive. But it’s not there, since they don’t know how to do it. And then I suppose the only other piece of advice I could offer with regards to asking for help, and specifically dinner, is, to make sure you ask somebody for dinner who can cook properly.

Bill Gasiamis 1:12:01
Be a bit picky with who you’re gonna ask for dinner. What about you, Jamie, what do you want to tell other stroke survivors who have maybe just got out of the hospital got home, and, you know, sort of getting used to things the way that they now are, instead of the way that they were what’s a little bit of advice?

Jamie Robinson 1:12:24
Probably the same thing, ask for help. You just got out of the hospital, you had a life-changing event, you cannot do what you used to do. And that’s okay. You’re going to need help walking, you’re going to need help getting up, you’re gonna need help reaching for this.

Jamie Robinson 1:12:47
Day by day, it’ll get easier, day by day, you’ll get better. But right now, you need help. That’s what Jess is, therefore, she’s here to help. So your wife, your husband, your caregiver, whoever it is, tell them what you need. Be honest with them. Don’t rely on yourself as much. You’re not going to be able to do it yet. And it’s always a yet you won’t be able to take care of yourself, but not right now. Ask for help.

Bill Gasiamis 1:13:29
It sounds like you’ve written part of the first chapter of my book because that whole attitude of I can’t do this yet is in my book exactly what you said. And adding that word into a sentence makes a massive difference. So what it does is tell the brain that I’m not doing it now, but I might be able to do it in the future. And that kind of takes some of the anxiety and the stress off of the fact that you’ve lost that function for now.

Bill Gasiamis 1:13:59
So that’s really good advice. Hey, guys, I appreciate you reaching out and asking to be on the show. Thank you so much for doing that. It’s lovely to meet you. I appreciate you sharing your combined journey because stroke’s never alone. Stroke survivors never do it on their own. There are always other people around who are also going through their stroke journey with their loved ones. And I wish you well. And I hope that in 12 months, there’s been improvement again.

Jamie Robinson 1:14:32
Yeah, thank you we appreciate you Bill, and your show.

Jessica Robinson 1:14:35
Thank you.

Bill Gasiamis 1:14:37
Well, thanks for being here with us and joining us in today’s episode. I do hope that you got a few gems from the conversation. If you’re interested in learning more about stroke recovery, make sure to check out my book available at recoveryafterstroke.com/book for additional insights into our guest’s stories and access to resources, like their social media links and interview transcripts visit recoveryafterstroke.com/episodes.

Bill Gasiamis 1:15:02
A big thank you to everyone who has already left a review. Your feedback is incredibly important in helping others on their recovery journey. If you haven’t yet, consider leaving a review on iTunes or Spotify. And if you’re watching on YouTube, drop a comment, like the episode, and subscribe for more content.

Bill Gasiamis 1:15:26
To all stroke survivors out there if you want to share your story and inspire others we’d love to have you on the show. No need to prepare anything just come as you are. And if you have a product or a service that supports stroke survivors, let’s explore that opportunity for a sponsored episode of the show reached out to me via recoveryafterstroke.com/contact for more details. Once again thank you for your support. Looking forward to connecting with you on our next episode.

Intro 1:15:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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.

Intro 1:16:11
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis 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.

Intro 1:16:33
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:16:48
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.

Intro 1:17:02
If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.

Intro 1:17:18
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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Recovering from a BRAINSTEM stroke – Jamie & Jessica Robinson appeared first on Recovery After Stroke.

Multiple Strokes: Understanding Causes, Risk Factors, and Prevention

Introduction

Multiple strokes, also referred to as recurrent strokes, represent a critical health concern demanding thorough comprehension and proactive preventive measures. In this guide, we delve into the intricate facets of multiple strokes, elucidating their causes, risk factors, and effective prevention strategies.

Understanding Multiple Strokes

Multiple strokes, characterized by the occurrence of successive cerebrovascular events, present distinctive challenges compared to isolated stroke occurrences. A comprehensive understanding of the underlying factors contributing to multiple strokes is imperative for devising targeted prevention strategies.

Causes of Multiple Strokes

1. Underlying Medical Conditions

Multiple strokes often stem from untreated or poorly managed underlying medical conditions, including:

• Hypertension: Uncontrolled high blood pressure significantly increases the risk of multiple strokes by predisposing individuals to vascular damage and clot formation.
• Atrial Fibrillation (AFib): Irregular heart rhythm associated with AFib enhances the likelihood of blood clot formation, leading to recurrent strokes.
• Diabetes Mellitus: Poorly controlled diabetes contributes to endothelial dysfunction and atherosclerosis, exacerbating the risk of multiple strokes.

2. Lifestyle Factors

Certain lifestyle choices elevate the susceptibility to multiple strokes:

• Tobacco Use: Smoking exacerbates vascular damage, promotes a prothrombotic state, and amplifies the risk of recurrent strokes.
• Physical Inactivity: Sedentary lifestyles are associated with poor cardiovascular health and increased incidence of multiple strokes.
• Unhealthy Diet: High consumption of saturated fats, sodium, and processed foods contributes to atherosclerosis and elevates the risk of recurrent strokes.

3. Medication Non-Adherence

Failure to adhere to prescribed medications, such as anticoagulants, antiplatelet agents, and blood pressure medications, increases the likelihood of multiple strokes. Consistent medication adherence is pivotal in preventing recurrent cerebrovascular events.

Risk Factors for Multiple Strokes

Identifying and addressing key risk factors is instrumental in mitigating the recurrence of strokes:

• Advanced Age: Aging is associated with an increased risk of multiple strokes due to cumulative vascular damage and comorbidities.
• History of Stroke: Individuals with a prior history of stroke are predisposed to subsequent cerebrovascular events.
• Gender: Men tend to exhibit a higher incidence of multiple strokes compared to women.

Prevention Strategies for Multiple Strokes

1. Medication Adherence

Strict adherence to prescribed medications, including anticoagulants, antiplatelet agents, and antihypertensive drugs, is paramount in preventing multiple strokes.

2. Lifestyle Modifications

Implementing healthy lifestyle changes significantly reduces the risk of multiple strokes:

• Smoking Cessation: Quitting smoking mitigates vascular damage and reduces the risk of recurrent strokes.
• Healthy Diet: Emphasize a diet rich in fruits, vegetables, whole grains, and lean proteins while limiting saturated fats and sodium intake.
• Regular Exercise: Engage in regular physical activity to enhance cardiovascular health and lower the risk of multiple strokes.

3. Management of Underlying Conditions

Effective management of underlying medical conditions, such as hypertension, diabetes, and atrial fibrillation, is essential in preventing multiple strokes. This may entail medication optimization, lifestyle modifications, and regular medical monitoring.

4. Education and Awareness

Raising awareness about the signs and symptoms of stroke, as well as the importance of early intervention and adherence to preventive measures, empowers individuals to take proactive steps in preventing multiple strokes.

Conclusion

In conclusion, multiple strokes pose a significant health threat, necessitating a comprehensive approach to prevention and management. By addressing underlying risk

Full Interview with Bear Herbert

Bear Herbert is a stroke survivor with speech challenges and surreal out-of-body experiences, offering unique insights into his journey.

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Highlights:

00:00 Introduction
06:36 Nonverbal communication and stroke recovery
12:59 Neurological disorder and its effects on life
17:43 Cryopyrin-associated autoinflammatory syndrome (CAPS)
20:06 Managing symptoms through dissociation and spiritual practices
27:57 Synesthesia and mystical experiences
32:22 What is synesthesia
44:36 Say yes to the mysteries of life
52:54 Spirituality, mysticism, and visions
59:35 Trauma, abuse, and mental health
1:08:56 Why the need to connect?
1:10:24 Emotional recovery and warrior heart concept introduced
1:14:08 Spirituality, consciousness, and personal growth
1:21:33 The three questions

Transcript:

Introduction – Bear Herbert

Bill Gasiamis 0:00
Hello, everybody, this is episode 300. And my guest today is Bear Herbert, who experienced multiple strokes has suffered from spontaneous bouts of being unable to speak, and has experienced out-of-body experiences where he can observe himself from a different perspective. Bear Herbert, welcome to the podcast.

Bear Herbert 0:23
Thank you for having me. It’s a pleasure and honor.

Bill Gasiamis 0:30
My pleasure. Tell me a little bit about what happened to you Bear.

Bear Herbert 0:37
It is quite convoluted. However, I had been going non-verbal since quite young, and probably seven was the first time and gone through those things my entire life. My parents would take me to the medical facilities, and they would do testing and say that I was emotionally and mentally fatigued.

Bear Herbert 1:05
And as a seven-year-old, I’m just thinking, I can’t talk what’s going on here. Fast forward to 2015. Me and my family were back in Central Oregon. And I had a massive stroke and went to bend Regency. I was diagnosed with antiphospholipid antibody syndrome, at that time, a clotting disorder, also known as Hughes disorder, a sticky blood disorder. And then fast forward to 2002.

Bear Herbert 1:45
I went catastrophic, which means producing blood clots, and three or more organs in my body at once. And to that point, for seven years, I had just been spitting up blood clots like Doc Holliday, almost. That’s when I got diagnosed with caps, which is a rare neurological disorder in the demographics are so small, that there is almost none available. And it helped me understand I’ve been having strokes, my entire life of sub different sizes.

Bear Herbert 2:22
And when I went catastrophic, they, I’m able to see things in my way. I’m very much ethereal like we all are, but I understand who I am and where I’m from. And the doctors, I saw their hearts in the way that I can see. And they all viewed me as their kid brother. And so I thought, well, even if they don’t know what they’re doing, they’re not going to try to kill their kid brother.

Bear Herbert 2:49
So I said yes to what they wanted to do. And they saved my life. And when I was in there, I had hundreds of heart attacks. I have a bicuspid valve in my heart, so my heart doesn’t close all the way. Also, the doctors came in, and I told them, I was having a stroke right now. And they told me no, you’re not your face isn’t draping, none of that stuff. And I said trust me, please.

Bear Herbert 3:22
And they left and came back 20 minutes later and put me in the MRI machine. I was in there for an obnoxious amount of time. I can’t remember how long he said but it was like six hours or something. And I kept having why they kept me in there so long as I kept having just hundreds and hundreds of 1000s of small strokes everywhere. They weren’t able to pinpoint them or account for them so they told me that I’ve had an innumerable amount of strokes at this point.

Bear Herbert 3:54
And that’s kind of how things got more formulated to what’s happening. And I’ve been working with the ability tree. They are an independent company here and Bend Oregon helping disabled people stay independent. And the worst part of my journey was being in convalescent centers and not being with my family. Also being nonverbal in those centers and the bad things that happen from the staff to nonverbal people.

Bear Herbert 4:28
They think they’re just invalids, I guess. And so, right now I’m on a great adventure. I have a gift of foresight I’ve always had and we are going to be producing facilities in Cook County, Oregon. And they’re going to be 3d printed with hempcrete. I have one of the people that I’ve known in the past who does that.

Bear Herbert 4:58
And we’re going to print the Is buildings and there’s going to be a healing and recovery center for families to be able to go and recover if they want together as a unit. And then also there’s going to be a Vocational Center attached to that. That is going to teach basic skills of all the different things I’ve done through my different stroke recoveries, that have helped me.

Bill Gasiamis 5:26
We’ll be back with my guest in a minute. But first, let me tell you about my new book called The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for personal transformation. it tells the story of 10 stroke survivors and the steps they took, that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.

Bill Gasiamis 5:56
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book, to grab a copy from Amazon, in your part of the world, just go to amazon.com type my name Bill Gasiamis into the search bar, and you will get results for delivery to your place from wherever you are in the world.

Nonverbal communication and multiple stroke recovery

Bear Herbert 6:27
And in the healing center, there’s going to be a lot of frequency devices and harmonic harmonic healing. So it’s the kind of thing that used to be considered woo-woo, not so long ago. But now the science is catching up mainstream to understanding what’s happening and needing a Vel Walker. That’s why I consider myself leaving this human suit so many times, but coming back to it, I have access to the other realms.

Bear Herbert 6:57
And so I’ve seen these frequencies and different lights and things that I knew would heal me. And so in 2015, I tried to find some, and I found some, they were red light machines. But I ended up getting an itera care device from Price International. And I use that on myself. And yeah, so that’s kind of what it is.

Bill Gasiamis 7:27
All right. So your experience with being nonverbal. You were nonverbal until the age of seven?

Bear Herbert 7:37
No, I was verbal, I was talking at a very, very young age, and it kind of scared my parents. Because I was talking at a very young age, and I told them things and things I saw. And because I’m this way, as born in 83, as a dead baby to a lupus patient with the cord wrapped around my throat preemie. And so I’ve always had this way of being and it freaked my parents out when I was younger, saying things and telling them what I was, who I was talking to, and all those sorts of things, you know, I can imagine, really just disorienting from them.

Bear Herbert 8:16
But Wednesday the seventh, was the first time I went nonverbal because of some sort of physical injury. I was riding in the front of the four-wheeler with my cousin, and another cousin came over the hill, and we had on and my knees were in the middle. And I just couldn’t talk for about three weeks. And then I started talking again, and everybody’s talking about I’m just a drama queen.

Bill Gasiamis 8:48
Uh-huh. So then it became just something that happened, something that you did rather than something that happened to you, and then you were better for quite a long time? Did you have any situations where things went off track after that?

Bear Herbert 9:03
There were a lot of times that I had things happen that I went nonverbal sense them through childhood, but as always I was going into the hospitals and then doing tests and saying that I was just mentally and emotionally fatigued. And that’s crap. And then so when I was an adult, I made my living in the oilfield drilling gas holds for assholes and kind of the funny vernacular, but I was doing that and operating cranes and heavy equipment and stuff.

Bear Herbert 9:42
And my boss came in one day to the field and picked me up and looked at me and said, I don’t know what you’re doing. But then keep talking on the phone and you won’t answer me. And I answered him, and he’s like, you know, words are coming out of your mouth Bear. And it just shocked me, because I was talking to him on the phone, and he hung up on me. But I was 32 at that time, and I went to the emergency room.

Bear Herbert 10:16
And they did the same thing. They did a bunch of tests and stuff. And they said that I was just emotionally and mentally fatigued. And so, at that time, I kind of had to stop working for other people. And so I, this shirt I have on his shirts, decorative concrete, I ended up building for businesses and years. And just every time I go through a stroke, I get on a different savant. Something comes to me in the Val, and I have to know all I can understand about it, or else my spirit isn’t satisfied. And I’ve done all sorts of dogma studies and different things, and blah, blah, blah.

Bill Gasiamis 11:04
So just before we go there, before we go there, let’s go back to your employer. Did your employer go and get you checked out? To see why somebody said you were nonverbal? And you thought you were responding, and they couldn’t tell that you were responding? Did you go to the hospital? Yeah, go through that process?

Bear Herbert 11:30
Yeah, that’s where he took me to the emergency room. And it was Christmas Day.

Bill Gasiamis 11:37
Were you aware that you weren’t talking at that time? And did it come and go?

Bear Herbert 11:44
No, I thought words were coming out of my mouth. And then I looked at myself talking to myself in the mirror, and my mouth wasn’t even freaking moving.

Intro 11:45
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid in case I make matters worse?

Intro 12:13
Doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

Intro 12:35
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

Neurological disorder and its effects on the life of Bear Herbert

Bear Herbert 12:59
So there’s a weird disconnect with my nervous system and everything is just as pulled away from myself. And it happened again when I was doing my decorative concrete stuff. I was doing proxies. I got USDA approval for indoor labs, horticultural centers, and clean rooms. So I got picked up by the cannabis industry and stuff. And I have researched plant-based medicines.

Bear Herbert 13:35
And it was a selfish kind of a deal, what I could do to help little kids like my little brother and I have to go through the things we went through with our parents if we went unknown, and so we ended up getting cannabis legal agents in the state of Utah for medical use. And then I was doing some floors at home and went nonverbal. And I call my little brother and just kind of web lead out a whimper and he says, Oh my God, give me a pen where you’re at, I’m gonna come help you.

Bear Herbert 14:09
So I did, he showed up. And he had a whiteboard with him. One of the markers. As crying little tears were coming out of my face. And he says we can do this buddy, remember Legends of the Fall? And He curled his face up and writes fuck, and starts laughing and I started crying. He’s like, don’t cry, man. Just write down what you need me to do. And we’ll do this. And so we got these floors done and stuff without me being able to even talk. And that happened quite a bit.

Bill Gasiamis 14:47
That happened quite a bit. So at what age was that?

Bear Herbert 14:53
That was starting when I was 32. I ran my businesses for three or four years and kept having more strokes and more strokes and just weird things happening.

Bill Gasiamis 15:07
Did anyone ever diagnose a stroke during those nonverbal episodes?

Bear Herbert 15:12
No, not at all. That’s the part that made me so apoplectic. I was just completely beside myself. And so when I got here to Oregon, again, I’ve lived half my life in Central, not central, but Northeastern Colorado, not sorry, Utah, on the reservation and half my life here in Central Oregon. And there are better facilities here and a lot better-trained staff, I believe. And that’s when I got diagnosed with antiphospholipid antibody syndrome. I was able to understand what was happening.

Bill Gasiamis 15:54
Was that a good diagnosis? From the perspective of Aha, here we go, we’ve got something to work with, or we’ve got some kind of an answer. And does that make you feel like perhaps it explained some of your childhood and some of the things that you experienced maybe from a medical perspective when you were younger?

Bear Herbert 16:16
It didn’t as far as flesh things out from my youth, that was still that part was still an enigma to me and every facet, however, and I got some basis to understand things and what was going on with my blood and blah, blah, blah. But in 2002, when I went catastrophic, that was the real Keystone for my understanding.

Bear Herbert 16:46
When Dr. Carr came in, and told me, This is what’s going on, I believe, he started asking me questions did I have a memory of extremely high temperatures, or fevers when I was a kid, have I ever gone, had a bad infection and different things, and my appendix was ruptured for seven days, my senior year of high school, and I didn’t get my antibiotics after I got out. And so my stomach opened again. So there were a lot of things that he could check, check, check. Oh, my God, this is what’s going on. And when I got that caps diagnosis, that is when clarity came to me, I’m like, Whoa,

Bill Gasiamis 17:31
What are the caps again?

Bear Herbert 17:35
I had a bunch of stuff pulled up so I could read it all to you. But I’m disheveled. And I haven’t been able to right now.

Cryopyrin-associated autoinflammatory syndrome (CAPS)

Bill Gasiamis 17:43
Let me see if I can find it, so is it an acronym C.A.P.S?

Bear Herbert 17:48
Yes. It’s a neurological disorder that expresses itself sporadically. And the doctor that I saw he’s seen two of us.

Bill Gasiamis 18:02
Let’s see if it has a description, CAPS neurological disorder, Cryopyrin-associated autoinflammatory syndrome.

Bear Herbert 18:22
There you go.

Bill Gasiamis 18:23
Whatever that means. Cryopyrin-associated autoinflammatory syndromes. And what does CAPS do to somebody? Do you know that?

Bear Herbert 18:41
For me, I have a super esoteric soul because of what I’ve been through and the bell so much. But what it does to me is there’s a phenomenon in the UF ology world, that’s called a pythium, the apothem effect. And that’s really what it does to me because I feel like my whole life I’ve lived in this mystic prelude of this grand mystery of creation. And I’ve been an intimate orchestrator of set events in my life.

Bear Herbert 19:23
I feel and understand that I’ve been there and done these things. So for me, I get a disconnected feeling from my body, and I’m here at my neurokinetic therapist’s office right now. I’m going to help him do some stuff in a minute. But that was a key for me and my healing was this neurokinetic therapy.

Bear Herbert 19:44
Because I was pissed when I first came because he put me squarely back in my human suit for the first time in my entire life. Because I spend most of my time in the ethereal realm just having fun without filling my body. be okay. And I knew I had to sell my body to heal. And I was like, Oh, no.

Bear Herbert managing symptoms through dissociation and spiritual practices

Bill Gasiamis 20:06
Okay, so let’s break this down. So when I searched for caps the symptoms were nowhere there Bear doesn’t say you have out-of-body experiences, or you’re living in the ethereal realm, what it says is periodic episodes of skin rashes, fever, and joint pain. It says these episodes can be triggered by exposure to cold temperatures, fatigue, or other stressors, or they may arise spontaneously episodes can last from a few hours to several days.

Bear Herbert 20:45
So my whole body looks like I’ve been burned excessively, all over my skin. And that’s when a flare-out happens, and they get big giant welts on them. And it’s very painful.

Bill Gasiamis 21:04
And they just occur?

Bear Herbert 21:07
Yeah, and my eyes. Another thing is my eyes, whenever I’m at CAPS flare, my eyes get bloodshot and painful. And I guess I told you a little bit more than I needed to or should have about how I experienced stuff.

Bill Gasiamis 21:23
No, no, you didn’t I understand what’s cool. What’s cool is that now because I’m such an expert in diagnosing people and all these things, to me what it sounds like, to deal with such what seems like you know, very dramatic, physical experiences and feelings.

Bill Gasiamis 21:49
You’ve become good at disassociating yourself, from the physical experiences in a way to manage pain, and you, you go out of body, and you go to this other place where you can exist, and you can coexist with your physical self, and not experience what most people would probably have a very uncomfortable time experiencing. So, do you feel that maybe it’s a, perhaps an ability that you had, that you’ve been able to develop? And you’ve been able to get good at? Because you’ve had to deal with caps for such a long amount of time in your life?

Bear Herbert 22:37
Yes, and no, I didn’t develop it. I was born having this ability. Yeah. But what’s been hard on what I’ve had to work on, mentally, is the key that I got to put into my head, you got to be in this human suit. And that’s the bottom line. I realized, that when 2016 When I had those strings of strokes, I went completely white, my hair and my face, everything was white, like I was 115 years old.

Bear Herbert 23:11
And now my hair’s got color to it, and stuff again. But the reason why that happens is that when you’re in your Merkabah, your human Sue white body, there’s no light in your human suit to nourish it. And you can’t do that you’ll atrophy in one way or another. That’s what I was doing and happy to do so. But now I realize I’ve got a mission, and you better get your ducks in a proverbial roll young man, or you’re not gonna succeed.

Bill Gasiamis 23:53
Are you stepping into your body more often permanently? How do you experience, your day? How do you do that? Not how do you specifically do that? But how do you spend time in one place or another place? Or have they combined?

Bear Herbert 24:10
The craziest thing ever is, since I’m very very olfactory driven, and after those first sets of strokes, I was living in a neighborhood and I don’t know how people know things or whatever understand. But anyway, the human suits we have been hacked or DNA for profit. And every race has its proclivity to certain neurotoxins, as far as laundry soaps and detergents.

Bear Herbert 24:45
And at that time of that stroke event, when I got out of the nursing homes and stuff, I’d go walking down out of my house and I would start having seizures because everybody’s long Read detergent stuff. And so now how I found my neuro kinetic therapist, he’s across the thing from a nail polish place.

Bear Herbert 25:10
I came with my elderly neighbor because there’s a dentist there too to help her support her to get her dentures but then fingernail polish triggered me and I liked it’s I’ll I was in the Val I could see colors and different energies and I walked by this office neuro kinetic therapy, and it says multi-dimensional healing neuro kinetic therapy and strength training.

Bear Herbert 25:37
And I went open the door like four times and talked myself out of it and walked away about the fifth time the gentleman opened the door and he was biting. So I’m like, Are you a stroke fisherman I kind of cocked my head like a dog 20 degrees to kind of get a different view, you know? And he’s not but he has archeological issues as well. But smells are what will trigger me to just get out of my body whether I want to or not, and I have no control over it.

Bill Gasiamis 26:06
And when you’re out of your body, what do you experience that’s different? So are you in your body now or out of your body now?

Bear Herbert 26:12
I am in this human suit. I’m very aware of my nose on my face. And I can see you I can see my hands. When I’m out of my body. It depends on where I’m at. I got diagnosed as a cataplexy tick in 2002, as well. I got into a head-on in 2001, I got this little teeny cut underneath my eyelid. And I had a head-on with the 2000 Peter bill and smashed my skull and my sinus cavities in.

Bear Herbert 26:45
And I have not slept but one or two hours a night since then on average. But now I’m able to do more because of all these beautiful things. But when that happened when the doctor diagnosed me with cataplexy, they asked me he said, Do you sleep Ababa? We’re talking about it. And I told them, I’m not even here. Yes. What do you mean, you’re not here? And I pointed back up to my right shoulder.

Bear Herbert 27:15
And I could see myself sitting up there watching. And he looks up. And he says, What the hell are you looking at? And I said I’m looking at me talking to you. And he had something spilled on his shirt. And I could see it from up there. But I couldn’t.

Bear Herbert 27:33
I wasn’t in my body to see what was on his shirt. But I told him, he had some mustard or whatever. And he’s like, this is creepy Bear. I’m like, sorry, I don’t mean to freak you out. Just, I’m trying to answer your questions. I don’t understand my reality either. And I’m comfortable. Making love to the mystery, of what all this is.

Synesthesia and mystical experiences of Bear Herbert

Bill Gasiamis 27:57
I love it. I love that you’re comfortable with that. Because I believe people when they tell me that they have these experiences, I don’t mind. I don’t get it. I don’t know what it’s like, but I’m cool with it. If that’s what you’re having no problem with. The cataplexy is the sudden loss of muscle tone while a person is awake. So, you’re in your life, you have these interesting things that happen.

Bill Gasiamis 28:25
One of them is you go nonverbal, and there’s you’re not you don’t know your nonverbal and you try and communicate and it’s you think you’re communicating but the other person can’t hear you. You also have cataplexy sudden loss of muscle tone while you’re awake. So is cataplexy something that you are aware of you know that it’s happened? How does it affect you? Are you not able to stand up? Are you not able to walk? How does it work?

Bear Herbert 29:00
That’s usually when I disassociate is when that happens. And that’s how that whole apothem conversation and why starting God on was because that’s the closest thing I can relate it to that people might understand to grab a hold of, but I just go away from myself, but I’m also hyper, hyper-aware, I have, I have these glasses that I had on my face, and I took them off.

Bear Herbert 29:32
If I have my glasses on, everything is clear to me because they’re prescription glasses. If I have them off, everything is a little bit fuzzy, and I don’t get hyper-fixated on things. And I’m able to have a conversation with people. So when I go into a business or a doctor’s office, I take my glasses off so I can instead of just zoning out on the details of their face As in the colors of their eyes, and just going off on some weird tangent in my soul.

Bill Gasiamis 30:05
Bear. This sounds like a mushroom trip.

Bear Herbert 30:08
It feels quite like one.

Bill Gasiamis 30:11
Okay, because I’ve had the pleasure a few times, right? So then what that reminded me of was when I’ve had some mushrooms, what it’s done is made me hyper-aware of things, and looking at myself in the mirror is quite an experience. Now, some people listening to this podcast have never heard me talk about this kind of stuff before and they might be going, Whoa, who is this guy? I’m not anyone that I don’t have a lifelike bear. But I have had a curiosity, since the stroke about what life is what else is possible, and what else we can see.

Bill Gasiamis 30:49
And let me tell you that mushrooms, a small amount of mushrooms from the right person, and all that kind of stuff in the right setup, and the right location, which usually is in a dark room in my house. Reminds me of what you’re saying. It makes me see colors and sounds and faces and voices and things that aren’t there that I experienced that are pleasant to experience.

Bill Gasiamis 31:21
Because it’s in a controlled environment. I don’t have to explain it to anybody. And, it’s quiet. Man, it’s like holistic in that you feel your body, your spirit, you know, all your senses. Everything is having the experience. It’s just not my imagination. Do you know what I mean? It’s beyond my imagination.

Bear Herbert 31:46
I live in that place.

Bill Gasiamis 31:48
Okay. All right. So I understand you. Okay, cool. Well, that’s what I’m trying to do understand you. So it’s not an imagination thing. It’s an actual full experience. It’s physical, it’s emotional. It’s spiritual. It’s everything.

Bear Herbert 32:05
Are you familiar with CS Lewis, and his writings? Chronicles of Narnia, or any of that stuff.

Bill Gasiamis 32:17
Oh, okay. Yes. Okay. I understand I know that book and movie.

Bear Herbert 32:22
Yeah, he, was an author at the same time as Tolkien. And they were both theologians. And that’s what they were doing writing allegories, and all this stuff. And he’s got a great book, it’s called Into the Awe. That’s where I live. I live in this mystic moment. And have my whole life. And another cool thing. My oldest daughter when she was in high school, did a presentation for whatever it was in school, but I have synesthesia as well, but not classical synesthesia.

Bill Gasiamis 33:03
One second. One second, we need to explain that I’ll bring it up.

Bear Herbert 33:08
I’m a case brother.

Bill Gasiamis 33:10
You are man, it’s such a bookcase from my perspective. I don’t know what it’s like to be. Okay, great. That’s excellent. So synesthesia is when your brain routes sensory information through multiple, unrelated senses, causing you to experience more than one sense simultaneously. So to give people who are listening an understanding.

Bear Herbert 33:38
Ratatouille, the about the rat? That’s synesthesia. When he’s tasting the food and seeing all the colors and all it’s the closest way I can touch it with somebody that Oh, and if they don’t know the movie they watching. Damn, that’s pretty fun.

Bill Gasiamis 33:58
Yeah, so will they get the experience of a sense of taste? And they experience it also in colors and movement and perhaps even in sound? And in a different feeling? Beyond just the flavor, it’s beyond the tongue. It also happens elsewhere.

Bear Herbert 34:18
In the spiritual realm,

Bill Gasiamis 34:19
yeah. Okay. Sometimes people come and have synesthesia where they were a feeling an emotional feeling beyond an emotional feeling. It has a color, it has a sound, it has a whole theatrical experience that goes with it.

Bear Herbert 34:43
The coolest thing I’ve ever experienced in that same phase of discovery and recovery, my daughter took me to the Central Oregon Symphony. And it was just the most emotionally, mentally, physically spiritually elating almost orgasmic experience, because every sense that I have in my body and I have a little bit more extra than most was just completely elated.

Bear Herbert 35:23
It was the most beautiful thing. And we came out and there were big giant snowflakes and the snowflakes were falling with the music I was just experiencing. So it went with me for about four hours into the rest of my evening when we left.

Bill Gasiamis 35:40
Did you pay extra for that event? Because you sound like you should have paid extra.

Bear Herbert 35:46
I feel like I should have. But it was a free cool thing that my daughter was able to get in for us. And it was pretty, pretty enjoyable.

Bill Gasiamis 35:56
All right. I know we’ve like gone off the topic of stroke. But we’re gonna get back there I promise we’re going to talk about stroke. But this is way more fun for right now. So how old are you now?

Bear Herbert 36:11
I just turned 40 Last April 29. This April 29. I’ll be 41

Bill Gasiamis 36:17
Do you have a family? What does the family situation look like?

Bear Herbert 36:21
I have one son, but that’s not any part of my life, unfortunately. And I have four daughters. And two of them are out of the house. And I had the pleasure of enjoying my first granddaughter in November. My oldest daughter graduated from COCC Community College with a degree in automotive. And she’s a lead mechanic for the city. And then my 18-year-old is at home with me and my 14-year-old.

Bear Herbert 36:58
My 18-year-old is going to COCC for aviation. So she’s flying around right now. I enrolled at COCC myself to get my GED and also to explore things that I know way more about than most human suits just because of who I am and what I’ve been through, like stones talking to me and all this weird stuff. But I want to learn from the professionals so I can hone my speaking abilities and understand when I need to just shut up and listen and the things I need to say and not say that’s my next goal in life.

Bill Gasiamis 37:40
Okay, I love that. So I was going to ask you about how your life has been. Because I imagine that most people are not as receptive to your stories about what you’re experiencing as I am. And some people might even think that you need psychological or mental counseling or therapy. So that’s why I asked you about your family. Is there anyone else in your family that has some of this experience that you have? Or are you the only one?

Bear Herbert 38:15
Just me.

Bill Gasiamis 38:17
Have you ever met anyone that’s like you or similar to you in the world, that you bumped into down the road somewhere? And then they said, Hey, man.

Bear Herbert 38:27
Somewhat, I’ve got this way of being like I said, and I am a creator’s noble heart for whatever that means to anybody. And so one of my jobs, I had my own business. And as going out the door late for work, was my schedule. So I’m only one new as late putting boots on jumping out of the, you know, into my truck. And there was a vehicle running off the road down the road, he was trying to run people off.

Bear Herbert 38:59
And I asked the creator and my guides to give me some advice here. And that’s what I always do. I never get scared. I’ve never gotten scared. But I’ve been very concerned a lot of times. And that’s what I do. I asked my guides and creator to put wisdom in me or angelic human suits that have angelic hosts in my path to help me and that’s what happened. But in this particular event, I got in front of the vehicle and was able to stop him and he ran into my truck a few times.

Bear Herbert 39:34
But when I stopped him and got out to talk to him, I could tell he was having a massive stroke. Because my mom had strokes her whole life. My grandpa had stroked his whole life. So I’m very very adept at it. I watched my mom get resuscitated 14 times before I was 14 years old. And this man became a great friend I saved his life and he and my family went on this great hunt and did all this beautiful stuff. So I run into stroke patients all the time. That’s divine appointments.

Bill Gasiamis 40:07
Did you say your mom and your grandfather had strokes? Same condition?

Bear Herbert 40:11
My grandpa had lupus. And my mom did.

Bill Gasiamis 40:16
Okay. All right. So that makes sense. So you have experienced that side of stroke regularly in that you know what to say, You know what, to what it looks like, you know how to potentially visualize it and diagnose that somebody is unwell. Being unwell in that particular way might be a stroke because you’ve seen it so many times. Were they heavily impacted by what the strokes did to them with a disability? Or did they have deficits that they lived with?

Bear Herbert 40:50
My mom did, my mom ended up with kidney failure, and with the lupus and on dialysis and stuff, my grandfather lived to be 92 years old. And he was the roving mechanic for northeastern Utah. And he was just a billy goat and a wonderful individual.

Bear Herbert 41:13
And he’s had deficits and stuff, and I just thought it was grandpa through the years, you know, but I understand now after having so many strokes, myself, and what that looked like for him, you know, makes me have a lot more empathy for, and also empathy and encouragement for the tenacity that my grandfather had. And just the sheer grit of that bastard was just absolutely amazing.

Bill Gasiamis 41:48
Those old-timers are a different breed. And let me tell you,

Bear Herbert 41:52
Yeah, they’re pretty amazing. All my grandfathers, they always called me sweetheart. And they came to me in the hospital when I was catastrophic. And, before that, I can get my blood drawn out of my main vein without passing out because of the pressure differential, I can taste it and fill it. And I just saw that I worked with psychologists for years to start taking blood draws without passing out.

Bear Herbert 42:23
And then when I went to into the hospital, that was what that was for was to prepare me for that because I had four IVs, going 24/7 for two and a half months. But I was there the reason why I was there was to be kind of a minister to the disembodied human suits because it’s disorienting when you lose your life to trauma.

Bear Herbert 42:49
You don’t know what to do. So I was able to be there and help people understand if you want to travel on, feel free, but if there’s something you want to stay here for, you’re more than welcome to come back. And that kind of lets people pass with a lot more dignity. I think, just being the weird person I am.

Bill Gasiamis 43:11
Yeah. You’re a minister for what? For the disembodied human suits. Okay. So where are you doing this work?

Bear Herbert 43:20
It was at the hospital, I was actually on the I was on the cardiac arrest unit floor. And that’s the most traumatic floor of the hospital. And my window was ace feasting window. So the sun was coming up in my window, and the helicopter would land and the ambulance would show up to unload people. But as they were showing up, I would see their light bodies just poof.

Bear Herbert 43:49
And I’m like, oh my god, this is why I’m here. I don’t want to do this. I don’t want to do this. And then when they came to me, my highest self and my grandfather’s that going on towards the last days before I started having more of those strokes and getting the MRI machine. They told me the reason why you couldn’t hear what we said was trying to tell you would use going to face when he’s driving here was because we got to work on you.

Bear Herbert 44:16
And we need you to participate in it. I said what do you mean? And they said, Well, I’ve had cluster migraines my whole life since a child and they said, We’re going to take these migraines away through some of these strokes, but we need you to participate. And like okay, what does that mean?

Bear Herbert 44:36
They said, just let your body do what it normally does when you start feeling these odd feelings and work with us. And so I did, and I don’t understand it. But I said yes to the mystery of it all. That’s the key to a successful life and a human suit. Saying yes to the mysteries of life. And it was rewired. I have had no Oh, no cluster migraines since that day.

Say yes to the mysteries of life – Bear Herbert

Bill Gasiamis 45:03
I love that. That is really good advice, regardless of which realm you live in. It’s like, say yes to the, what was it to the? The mysteries and the opportunities? Yeah, yeah. That’s another way of saying a bit curious and go with your curiosity and discover and learn and find out about things. Now. Your comments earlier, you’ve had many, many, many strokes in the form of small blood clots, etc.

Bill Gasiamis 45:34
And I’ve had three brain hemorrhages. And when I tell people, they look at me, and they go, Oh, you don’t look like you’ve had a stroke. Or, you look great. And all that kind of stuff that you don’t look like somebody who’s had multiple, many, many, many, many, many strokes. So why is that? Why don’t you look like a normal? Suppose a stroke survivor has a deficit. Who has been challenged with things? Why is that? You know, why can anyone tell you why

Bear Herbert 46:09
I can tell everybody why, but whether, they choose to believe it or not, that’s up to them. It is because I know who I am. And I know where I’m from. And I don’t want to get all esoteric on you. Because there’s no point in all of that, however, it’s because of my soul, and where it’s from, and what my mission is. And I am here to there are a lot of Val Walkers ambulating the face of the earth right now, avail Walker is a person who has lost their life and the human suit, and come back to the same human suit.

Bear Herbert 46:47
There’s more of us right now on the face of the earth than any other epoch of humanity. And why we are here specifically at this time, is because of this great ascension that is happening in the cosmos that is affecting the human suits on a water planet, and human suits are made of water. We are dipole antennas, for Spirit. Therefore, we are here to help the human students ground themselves and get in touch with sources as much as they can to cleave the things that are going to help us progress as a species.

Bear Herbert 47:28
And there’s been four bifurcations, that’s happened in the last eight years that I’ve seen and tasted happening. And what that all means for us right now is the old things aren’t going to suffice. And ambiguities, misleading things, half-truths, that shit is gone.

Bear Herbert 47:52
And what’s going to happen is people that are ambulating with a proper heart posture of truth, clarity, and as almost what you do when you ambulate with a heart posture, you almost and you will ultimately end up activating your clairvoyant mind because we all have clairvoyance, see with us and within us.

Bear Herbert 48:22
And that was part of the strokes. When I thought I was talking, I was communicating with everybody. But they didn’t have the same bandwidth to do the telepathy thing. And so that’s why I was so befuddled by it all. Sorry, I talk in circles, but they all come together.

Bill Gasiamis 48:40
They do. You do talk in circles. It’s interesting to hear. So. Okay, so then that’s a cool explanation as to why you don’t look like you’ve had a stroke. But then you know that you’ve had a stroke? or multiple strokes? Do any of those multiple strokes affect you with the standard face-arm speech type of symptoms?

Bill Gasiamis 49:09
Do you know that it’s happened? When do you become aware of it? And then how do you take action around there since you know about stroke, and you’ve seen people have strokes, your grandfather and your mother? But how do you experience a stroke?

Bear Herbert 49:27
My big one is in 2016 sort of side years after I felt like my face was this right side of my face was a melted pepperoni pizza just dangling. And I’d look at myself in the mirror, shake my face, and see that it wasn’t there. But I would fill it with my hand and I could fill the drippy cheese and all this weird stuff. And now, the whole right side of my body is completely numb. I can’t feel my right side.

Bear Herbert 50:00
My body period. And I’ve had to learn how to walk and talk multiples upon multiples. I’m going back to school now. And so I’ve had to have been forced to start writing again. And the first time I started writing left-handed to try to do that, but it didn’t work. Now I’m just doing it with the math and stuff. And for the first two weeks, it looked like I was writing some sort of Egyptian glyphs of some sort. It didn’t even look like words or letters.

Bear Herbert 50:38
I don’t understand why. But once I started doing it and the teacher, I was open with her and what I was going through. And she’s like, Well, I’ll try to write this. And I look at her like, Are you freaking kidding me? And she looks at me like, Yeah, I’m not kidding.

Bear Herbert 50:55
And so I try it. And I’m like, Whoa, and I have a mental palate. And when I do it the proper way, what she was telling me, I can feel and taste those new neurons, neuro pathways connecting, and it’s like electricity going right through my hand and everything.

Bear Herbert 51:13
And I’m like, This is my num hand, too. I’m like, and I’ll just Woo and she looks at me like, What am I sorry, I just got a job. You got to have fun with life. And we can be crusty crabs, or we can put it on the light side of life and try to laugh through I’d rather laugh than cry. I’ve done too much crying in my wife.

Bill Gasiamis 51:35
So are you on any medication for the conditions that you’ve been diagnosed with? Especially the sticky blood, I imagine doctors would want you to want to get a blood thinner.

Bear Herbert 51:48
They I had been on Eliquis for years. And then the doctor went to refill them. And he told me I had to go on warfarin. I said I can’t go on warfarin. He said, why? I said because blood will squirt out of my belly button. He said, That’s impossible. And I’m like, Well, I’m not doing it. They said, Well, I’m not filling your meds. And so I took steps to go to the doctor anymore for seven years.

Bear Herbert 52:20
And that’s how I went catastrophic. Okay, and so when I went to the hospital, they put me on more friend, and one of the nurses, the nurse, nurse audiologist, came into the room, I pushed the button in the bathroom. So I need to talk to you to show you okay, I said yeah, just need to come in here she came. I said, brace yourself. She just said what’s going on? I stood up and opened my hospital gown and blood squirted out of my belly button, and squirted all over her and she almost passed out.

Spirituality, mysticism, and visions

Bill Gasiamis 52:54
And why was that happening?

Bear Herbert 52:57
Because Warfarin is a rat poison. That’s what it is. That’s how it thins your blood. They use it for rat poison because that’s how it kills rats. After all, they bleed to death inside. And I’m just this weird ass amalgam of the human spirit that works way differently than most.

Bill Gasiamis 53:19
But how did you know it was gonna bleed out of your belly? And then how was I heard out of your bag? I had

Bear Herbert 53:24
no idea other than the fact that I’ve seen it before. And I don’t know when and how if it was in a different life, or I have no idea. I don’t know how to get congruently in these things. That’s the biggest frustration for me is experiencing the mystic all the time, but not having any congruence in it to be able to explain it to other human suits to grab a hold of as a tangible container for them to understand it.

Bill Gasiamis 53:54
Human suits you describe us as human suits. You don’t see yourself in the same way. How do you see yourself and how do you see other people like me?

Bear Herbert 54:06
I am a human suit. I am completely anchored in this thing again because of Dave Edlund. But to answer your question more poignantly we are all spirit 100%. And if and spirit has no color. And so in one of my last lives, I was a black woman. And when I was a little kid, I had to drag around this little black baby naked baby doll and my parents would say, Who is that? A said that’s me.

Bear Herbert 54:40
And they’ll Haha No. And they didn’t believe me. And then I found a picture of it and the album’s the other day. I’m like, Oh, my God, I remembered it just like it’s like, Highlander scene from the Highlander movies. It’s a quick I mean, you just, you just get the memory and the light memory of that time and place and so if Bill had his whole Majesty in that beautiful human suit you were around, you cannot hold it, you would burst asunder is too much plasma too much light, you couldn’t be able to anchor it in your body.

Bear Herbert 55:20
So you’ve got a seventh of Your Majesty within your human suit. Also, the solar flares, are plasma from the sun. And they update us as human suits when the people tell you don’t give them the sun because it will cause cancer and all this stuff. That’s not necessarily the truth. However, the things they sell you to put on your skin are toxic to you, and the water you go in is not good for you.

Bear Herbert 55:53
And so, if also, if the world had more human suits that were fully activated, that’s what I do now, I go around activating people, I have a proclivity for Hazel-eyed brothers and sisters because I feel like we have a deeper sense of soul. And so when I talk to people on their Hazel alive, I can start talking to them.

Bear Herbert 56:15
And when I start talking to them, the hairs on my arm will start standing up. And that is a spiritual response to something resonating with your spirit. You have muscles in your skin called erector Pillai muscles. And so when things ping on that your spirit goes, whoa. And so I start talking to these hazle-eyed Brothers and sisters and telling these things, and then they start looking at their skin and it’s doing that.

Bear Herbert 56:44
And what I do, I said, can I touch you? And if they say, Yes, I grab their hands. And I tell them, whatever made you feel this way, right now, cleave to that, that is what ignites your spirit, that’s what’s going to make you the human suit, angelic hosts you need to be to help the people around you. And that’s kind of how I live my life.

Bear Herbert 57:08
And if all the human suits were completely awake and engaged, the Earth could handle it, the Earth would burst asunder because there’s just too much light energy just for through our bodies. So everything is imbalanced as it should be. Whether it sounds crazy or not, it just is what it is. And I’m just grateful to be part of it. And be able to see these experiences and taste them in such lavish, robust ways.

Bill Gasiamis 57:50
You’ve always explained in our conversation, you’ve always explained these things as particular. You know, they seem to be quite positive experiences, does the taste ever become not nice? Do you ever have experiences where the visions or the visual aspect of it and the synesthesia is a not pleasant experience?

Bear Herbert 58:14
Yeah, it’s not good. It’s not good at all. It’s, it’s like all that embodies the thought of what evil might be shows up. And the worst part for me was in the convalescent centers being completely nonverbal and having the staff molest and rate me and stuff. Because I was just invalid, that kind of talk from their viewpoint.

Bear Herbert 58:44
And when those things were happening to me, it was the most disgusting, terrible taste on the mental palate you could imagine. It was the closest I could imagine because what it tasted like physically was the second time my appendix hole ruptured all of those things that I experienced these times were the same, they had that green, yellow, moldy, putrid flavor. On the mental palate, it’s like your soul has been raped. I do a lot of advocacy for human trafficking stuff too, because of the way I see things and all that stuff, too.

Trauma, abuse, and mental health

Bill Gasiamis 59:35
Were you a kid when that was happening to you?

Bear Herbert 59:38
No, that was actually as an adult, young adult, here in Central Oregon.

Bill Gasiamis 59:44
So you had been nonverbal a few times.

Bear Herbert 59:48
Yeah, a lot of times.

Bill Gasiamis 59:51
And that those times, always ended up in hospitalizations.

Bear Herbert 59:56
99% of the time.

Bill Gasiamis 1:00:00
And then were there was anyone ever able to intervene during those experiences where other people mistreated you? Did those things get sorted and resolved, people get taken.

Bear Herbert 1:00:20
Now, nobody came to task for any of those things. One of the first ones I was an adult, considered an adult, and they put me in a rehabilitation center right here by this building I’m in. And it was a wonderful place, and they had a Zen garden outside and all this beautiful stuff.

Bear Herbert 1:00:42
But four patients were in there too. And they were all women. It wasn’t the staff that did that, but it was the patients themselves. And they had come into my room and did those things to me. And then when I got out of those situations, I was a ward of the state and considered they put me in adult foster care.

Bill Gasiamis 1:01:08
Were you nonverbal as well as catatonic or what was your state?

Bear Herbert 1:01:13
Sometimes it comes in and vacillates.

Bill Gasiamis 1:01:17
Okay, so people to take advantage of a situation like that you’d have to be not able to defend yourself. Is that a state in which you’re unable to defend yourself?

Bear Herbert 1:01:27
Completely catatonic.

Bill Gasiamis 1:01:28
Just okay. All right. So you’re talking about this very matter-of-fact? Is it a matter of fact, are you okay talking about this? Have you dealt with this kind of stuff?

Bear Herbert 1:01:45
I’m cool talking about it, people need to know, the knees, there needs to be a picture that’s properly painted, especially for this center that I’m about to embark in. For people to understand what the reality could be without having something like this east of the Cascades.

Bill Gasiamis 1:02:05
Do people find it difficult to hang around with you? Because your conversation goes to so many places, you’re the kind of guy, in Australia, we’ve got this thing that we do, right, which is, when you ask somebody, Hi, how are you? You’re not interested in their answer. You just say hi, how are you? And the other person says, Good. And then they say, how are you? And you say, good.

Bill Gasiamis 1:02:31
And then that’s considered like a long-form greeting, right? But you seem like the kind of guy if I said, Hey, Bear, how are you? If I asked you that question, I’d get a 10-minute answer. Are you as a result of that? Are you difficult to hang around with? I’m not saying that I wouldn’t want to hang around with you or whatever. But I find that many people because I’ve asked you questions I’ve tried to make this conversation about stroke.

Bill Gasiamis 1:02:58
It’s not going to be about stroke. And I’m cool with that.

Bear Herbert 1:03:02
I’m sorry. Thank you.

Bill Gasiamis 1:03:03
Yeah, that’s all right. And then it’s like, how do people interact with you? Do people interact with you? Do they struggle to interact? Because I imagine that most people are not prepared to go down this path with you. How do you interact with people? It’s so interesting.

Bear Herbert 1:03:26
A poignant answer is the way forward for us now, understanding that and therefore, the people that are close to me in my life like my family and stuff. I wear them thin, quick. However, out in public and stuff, I’m just a magnet to other people. I mean, people come up to me and start telling you some of the most outlandish stuff that’s personal to them that they are going through have been going through.

Bear Herbert 1:04:01
Because I am that dipole antenna and my energy is very enveloping, and I am a spirit of unconditional love. And a lot of people get it twisted in their constructs and their own mental space. Some people think that I am an entity that wants to be with them and stuff intimately. And it’s like, you know, I just love you and whatever you’re going through, I’m here for you as much as I can be.

Bear Herbert 1:04:38
But that’s where it stops. So in public, I do very, very well, especially with my devices. I kicked open the door in the ethereal realm again to start the Traumatic Brain Injury Awareness group here in Central Oregon. And I wear a necklace on my neck that has Essential Oil and that’s overwhelming to my factories so I don’t mess up.

Bear Herbert 1:05:05
But there are people more sensitive than me. So I need to charge my ozone machine and wear it around my neck so that way I can be buffered from all these smells. But still not push other people over the edge. I’m a very considerate motormouth, I guess you could say.

Bill Gasiamis 1:05:26
So you consider yourself a motormouth. And that’s probably the terminology that somebody might use to describe. Bear that Motormouth Edge starts talking anyway and never ends this type of situation. I’ve heard it a lot. Okay, okay. All right. So you’re very aware of yourself, you are quite familiar with how you are experiencing the world by other people, etc. Now I relate to something that you just said, I relate to being in the street, it’s a lot of people.

Bill Gasiamis 1:05:56
And then it’s like, I get picked out or singled out by the homeless person, and they make a beeline for me. And they say to me, have you got some change, and there’s 1000 people around me. And I’ve it’s happened once or twice, and I didn’t think anything of it. But it happens all the time. And I’ve started to notice a pattern.

Bill Gasiamis 1:06:16
And of course, I always go into the central business district with change, because I now know that I’m going to get asked, and if somebody asks, I want to be able to give somebody three or $4, to buy a coffee or whatever, or to add to the collection of coins so that they can achieve what they need to achieve for that particular day. And also, you’re the kind of guy that I run into a lot. And I’m not saying that.

Bill Gasiamis 1:06:47
And I say that because I will stop, something will stop me or I’ll have an interaction with somebody that seems benign. And then I’ll be going into places with them after I’ve just met them that I shouldn’t have ever expected to go. And when requires having conversations about things that we should never have expected. So I can relate to that part. And I get rather than try and wrap people like you up, wrap you up and say, Well, I’m done. I’ve gotta go.

Bill Gasiamis 1:07:21
Or I’m not interested in that. I am curious about what they have to say where and where they’re at and what they’re talking about. And you’re not the first person I’ve come across who has told me about these types of conditions or since they are I call them conditions for lack of lack of me being able to describe them.

Bill Gasiamis 1:07:21
But synesthesia and all these experiences and other realms and out of the body and in body and crossing the boundaries between the two. And then you said something else that’s interesting. Which are Hazel-eyed people why Hazel-eyed people why not blue why not green? Why Hazel? And do you know what color my eyes are?

Bear Herbert 1:08:08
I’m assuming they’re Hazel, but I don’t know.

Bill Gasiamis 1:08:10
Well, there’s a bit of green in the middle. And they’re hazel, and they change but mostly, if you look at my eyes, you think they’re Hazel or brown people will describe them as brown. If you go be closer you get to see the green tinges so why Hazel?

Bear Herbert 1:08:30
That’s the part of the question. And I’m saying that I will go break into deep esoteric.

Bill Gasiamis 1:08:43
Narrow it down, just give me the because answer or the very simple one. Like you said, Why not blue? Why not green? Why not black?

Why the need to connect?

Bear Herbert 1:08:56
The Hazel is more anchored into the great root race that hasn’t been truly activated on this plane yet. Has nothing to do with color or ethnicity. It’s a spiritual place where it’s from.

Bill Gasiamis 1:09:14
Okay, I don’t know what that means. And maybe we shouldn’t go into it. But like, I had to ask that something was making me ask. That’s cool. So why did you feel the need because you seem like you’re very able to be adaptable, you’re very able to come to terms with things that are going on that have happened to you that you’re experiencing. Why did you feel the need to connect with a group of people on an Instagram page, which is about recovery after a stroke? What drew you to there?

Bear Herbert 1:09:56
Everybody who’s been through a stroke is just an inspiration to all of humanity, whether humanity wants to realize it or not. But each one of us is a major asset to the whole of humanity because we’ve been to places that are darker and more disruptive to the soul than 99% of the human suits ambulating the face of the earth right now.

Bill Gasiamis 1:10:20
Wow.

Bear Herbert 1:10:23
That’s the short answer.

Emotional recovery and the warrior heart concept introduced

Bill Gasiamis 1:10:24
I can relate to that. I know what you mean. Okay. So what do you feel like a kinship with people who have had a stroke?

Bear Herbert 1:10:35
One more time, please.

Bill Gasiamis 1:10:36
Do you feel a kinship with people who have had a stroke?

Bear Herbert 1:10:41
Yes, absolutely. I feel like they’re my brothers and sisters on different levels and other people can’t possibly comprehend.

Bill Gasiamis 1:10:50
Okay. I was going to ask you, are they the people you relate to the most?

Bear Herbert 1:10:57
Yep.

Bill Gasiamis 1:10:58
Okay.

Bear Herbert 1:10:59
I get it. Because usually, we’re the most looked down on in society as well. Just how things happen, I don’t understand it, but I see it and I taste it and with me, how I understand how I affect others, I can feel and taste their energy. And if people are more attracted and want to talk to me, I can feel and hear it a block away. And I’ve had a choice in the past part of my life to where I could run away from it and I have, and they always find me anyways.

Bear Herbert 1:11:34
So I have decided to stop running from anything. And I needed to know, I know, I’m about to, you’re the springboard for me into what I’m walking into. Now, I appreciate this opportunity more than I can properly convey.

Bear Herbert 1:11:51
But I am about to enter a phase in my life of international speaking engagements of different kinds and sorts when I needed to break this ice for myself and my consciousness to say, you can do this. Don’t be afraid. Don’t be a scary bear. But be that warrior heart that you are, and faith with integrity, and poignancy, and please don’t walk in circles there, but I did.

Bill Gasiamis 1:12:29
The warrior’s heart is an interesting term that you use to tell me what is a warrwarrior’srt. One of the things that stroke survivors miss in their recovery is doing the work that’s related to the heart, the heart, the emotional work. So what they do is because we’re such a head-based society, we all do the head-based recovery, it’s like, well, we have to fix the brain because the breaks brain has been damaged, which I agree with, it’s perfectly fine.

Bill Gasiamis 1:12:59
We get stuck there. And often then people who can’t walk or move one of their limbs, go into a physical recovery. But very rarely do I come across stroke survivors who have had an emotional recovery or heart-based recovery and in my book, there’s a chapter called The Heart Brain Bear. So tell me why. Why the warrior heart how did you come up with that term? What does that mean? The warrior’s heart.

Bear Herbert 1:13:29
For me, personally, the most poignant I can put it without going into all the rabbit trails that need to be gone into to flesh it out properly. William Wilberforce is the original abolitionist in the modern era. He is the English Parliament Terry that got the abolishment of the clamp, transatlantic slave trade.

Spirituality, consciousness, and personal growth after multiple strokes

Bear Herbert 1:14:01
I am a complete abolitionist at heart. So I have to feed my heart properly to be able to properly ambulate my mission and cute and execute my mission in this human suit because I’m done. I’m not reincarnating in this place again. So I’ve got things I have to get done. And that puts a lot of fire in my soul and still into my words.

Bill Gasiamis 1:14:46
Your experience, you’re out of body out of the human suit experience that you have. Is that a heart-based experience? If you can associate it with intelligence in your body is a heart-based experience because we have neurons in our gut, we have neurons in our eyes, we have neurons in our brain, and we have neurons in our heart. There are neurons throughout our nervous system.

Bill Gasiamis 1:15:22
And I consider them intelligences. The eyes, for example, are part of your brain, and they are the external part of the brain, they are part of the brain that has evolved to be outside of the head to bring in information and allow us to transverse the planet. And to get around and to be safe and to avoid obstacles and all that type of stuff to give us information. So your out-of-human-suit experience is what kind of experience can you associate it with in the human realm?

Bear Herbert 1:16:02
It is connected to the heart, but it is completely other than the heart. People that are very religiously dogmatic, understand it to a very, very, very fine detail because of their dogmas and the different rituals, and the different relations they get from their different religious practices. So it’s pure, an unbridled spirituality.

Bear Herbert 1:16:38
For me, it’s just I’m living my naked self, my soul bared to the universe, and my heart is on fire, just doing battle in the angelic realms. And that’s who I am. I’m a warrior. And I imagine when I was a black woman, I was probably a beautiful Amazonian warrior as well, I’m assuming because that’s my soul. You know?

Bill Gasiamis 1:17:11
Why not? What do you hope to speak about when you get to the stage?

Bear Herbert 1:17:24
The enlightenment that needs to come to humans suits their development, and treat each other the way it needs to be done. None of us are more important than the other. We’re all super interconnected, possibly way more than we can imagine.

Bear Herbert 1:17:44
We are the universe expressing ourselves through these human suits. And once we grab a hold of that, literally in our minds and souls, that is when the biggest shift for humanity is going to anchor in and new days are on the way. I just need to figure out a better way and polish myself enough to not do my rabbit trail job or drabble that makes people nauseated by talking to me.

Bill Gasiamis 1:18:19
Yep, that’d be part of your training, you’re gonna have to come up with a script. Practice that script, memorize it, you know, have an opening, have a middle part, have a conclusion, and stick to it. And then just practice and practice and practice and get to the point where you can just get that out.

Bill Gasiamis 1:18:41
Make sure it delivers the message. And then leave it at that because, you know, those spaces are always limited for time. Deep dives into these types of things are not always possible, but it’d be very interesting to hear you deliver such a well-structured.

Bear Herbert 1:19:07
I’m interested to see what it’s going to sound like too. I’ve never shirked away from anything in my life. The things scare me I jump in. As an adult, I worked on the drilling rigs, I was scared of heights, but I always worked on the Derrick’s 300 feet above the ground when things were moving and made to sway because I was scared of it. I’ve always been scared of snakes. I catch every snake I can see so I’m not scared of it. I was scared of public speaking. And so here I am talking to Dill. Doing the damn thing.

Bill Gasiamis 1:19:43
Yeah, it’s good. This is a gentle way to get into speaking publicly because it doesn’t have to be too structured. We can go all over the place that doesn’t matter. Right? But on a stage, you have to be a little more restricted in the way that you go about, which is cool.

Bill Gasiamis 1:20:01
I noticed when you answer a lot of my questions, you look up and your eyes kind of tend to tuck back behind your eyelids is that something that allows you to access the areas or the places where you need to go to get answers? Or is that just a human physical trait that you just have?

Bear Herbert 1:20:26
No, I’m getting memory and pulling my memory answers down out of my database, because we’re all human computers whether we realize it or not. So I look up to grab my information to come back to you.

Bill Gasiamis 1:20:45
That’s pretty common because people do that. Most people access their memories, either by looking up to the left or up to the right, most people will look up into the left. But you’re just more obvious, you have a very prominent way of going there, you go there with both eyes, and it’s almost straight up rather than up into the left and you spend a lot more time there than most people.

Bear Herbert 1:21:12
I taste it. That’s I think that’s why I’m lingering because I’m getting the flavors and the textures of everything I talk about are so deep and so beautiful. And trying to put that into poignant words is tough, especially for such an elaborate soul as mine.

The three questions for Bear Herbert

Bill Gasiamis 1:21:33
Okay, I get it. So, we’re going to ask you the three questions a lot of people get asked in the podcast for stroke survivors as we wrap up the episode. What is the hardest thing about a stroke for you?

Bear Herbert 1:21:54
The lack of empathy the world shows stroke patients is what burns me worse than anything.

Bill Gasiamis 1:22:03
Or enough. What has stroke taught you?

Bear Herbert 1:22:09
Resilience? Tenacity.

Bill Gasiamis 1:22:18
And what do you want to tell other stroke survivors? Allow yourself to go beyond the two-word answer for this next question, which is, what do you want to tell other stroke survivors who are going through something similar? That we’ve been through or just on their journey or they’re a little bit confused, they’ve found this podcast they don’t know how to deal with it, or what do you want to tell other stroke survivors? What would be your words of wisdom?

Bear Herbert 1:22:52
Not only are you important, but you’re an inspiration to this world. And to another human suit that has no comprehension of what you’re going through. And the lack of empathy that they show you should help foster and grow tenacity in your soul to be able to articulate properly, the depths and beauty of your soul to the world around you. Because you are an asset to this world. Like no other. You got this shit, you’re an inspiration to all of us. Kick ass!

Bill Gasiamis 1:23:38
That’s awesome. Bear thank you so much for joining me on the podcast.

Bear Herbert 1:23:43
Likewise, brother, I appreciate it.

Bill Gasiamis 1:23:46
Thanks for joining us on today’s episode to get a copy of my book about stroke recovery go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.

Bill Gasiamis 1:24:06
Thank you to everyone who has already left a review about the podcast on Spotify and iTunes, it means the world to me. Podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of content to find it easier. And that is making their stroke recovery just that little bit better.

Bill Gasiamis 1:24:29
Go ahead and leave a review and a few words about what you think the show means to you on iTunes and Spotify. I would deeply appreciate it if we wouldn’t have been able to get to episode 300 If people hadn’t supported the podcast in the way that they do by sharing it, commenting on YouTube videos, and leaving reviews on iTunes and Spotify.

Bill Gasiamis 1:24:52
So I appreciate it. If you’re watching on YouTube, and you comment below the video you’ll get a response from me if you’d like to like this episode that helps as well because YouTube then makes sure that other people get to see these videos. If you’re a stroke survivor with a story to share about your stroke experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them.

Bill Gasiamis 1:25:18
All you need to do to qualify is be a stroke survivor who wants to share your story in the hope that you are going to help somebody else going through something similar. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover, there is also a path for you to join me on a sponsored episode for the show.

Bill Gasiamis 1:25:40
For anyone interested in reaching out to me go to recoveryafterstroke.com/contact fill out the form explaining briefly which category you belong to, and I will respond with more details about how we can meet via Zoom. Thank you again for being here and listening. I appreciate you. So you’re on the next episode.

Intro 1:26:01
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 or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:26:18
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.

Intro 1:26:35
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 1:26:56
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 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:27:20
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Multiple Ischemic Stroke Recovery – Bear Herbert appeared first on Recovery After Stroke.

Understanding Traumatic Brain Injury

Traumatic brain injury (TBI) is a complex medical condition resulting from a sudden blow or jolt to the head, causing damage to the brain. At its core, TBI disrupts normal brain function, often leading to severe consequences if left untreated. Here, we delve into the depths of TBI, exploring its causes, symptoms, diagnosis, treatment options, and prevention strategies.

Causes of Traumatic Brain Injury

TBI can stem from various incidents, including:

• Accidents: Motor vehicle accidents, falls, and sports-related injuries are common culprits.
• Violence: Physical assaults, gunshot wounds, and combat injuries can inflict significant damage.
• Blast Injuries: Military personnel and civilians exposed to explosive blasts are at risk.
• Penetrating Injuries: Objects penetrating the skull, such as bullets or shattered fragments, can cause TBI.

Symptoms of Traumatic Brain Injury

The symptoms of TBI can range from mild to severe and may include:

• Physical Symptoms: Headaches, nausea, vomiting, dizziness, and loss of coordination.
• Cognitive Symptoms: Memory problems, difficulty concentrating, and confusion.
• Emotional Symptoms: Mood swings, irritability, anxiety, and depression.
• Sensory Symptoms: Blurred vision, ringing in the ears, and sensitivity to light or sound.

Diagnosis and Evaluation

Diagnosing TBI involves a comprehensive evaluation, which may include:

• Physical Examination: Assessing neurological function, reflexes, and motor skills.
• Imaging Studies: CT scans and MRIs help visualize brain injuries and assess their severity.
• Cognitive Tests: Evaluating memory, concentration, and cognitive abilities.
• Patient History: Gathering information about the injury, symptoms, and medical history.

Treatment Approaches

Treatment for TBI depends on the severity and type of injury, and may include:

• Monitoring and Observation: Mild cases may require only observation and rest.
• Medications: Pain relievers, anti-seizure drugs, and antidepressants may alleviate symptoms.
• Rehabilitation Therapy: Physical, occupational, and speech therapy help restore lost abilities.
• Surgery: In severe cases, surgery may be necessary to repair skull fractures or remove hematomas.

Preventing Traumatic Brain Injury

Prevention is key to reducing the risk of TBI. Some preventive measures include:

• Wearing Seatbelts: Properly restraining in vehicles can prevent head injuries during accidents.
• Using Helmets: Wearing helmets during sports activities, cycling, and motorcycling can protect the head.
• Fall Prevention: Installing handrails, using non-slip mats, and maintaining a clutter-free environment can prevent falls.
• Safety Measures: Adhering to safety guidelines at work and following firearm safety protocols can prevent TBI.cols);

In conclusion, understanding TBI is crucial for early detection, treatment, and prevention. By raising awareness and implementing preventive measures, we can mitigate the impact of traumatic brain injuries and enhance overall well-being.

After The Crash – Full Interview with Kelly Tuttle

Kelly Tuttle, a neurology nurse practitioner living with an acquired brain injury stemming from an automobile collision, mirrors that of stroke survivors in many ways. Despite these variances, the impact on daily life remains similar. Kelly’s recent publication, “After the Crash,” serves as a guiding beacon for those traversing the arduous path of recovery from traumatic brain injuries.

Instagram
Kelly’s Website

Highlights:

00:00 Introduction
05:14 Decision-making after a car accident
10:02 What caused the traumatic brain injury
17:55 Common issues in seeing a neurologist
19:25 Physical Medicine Rehabilitative Doctor (PMR)
25:17 Bill’s Book The Unexpected Way That Stroke Became The Best Thing That Happened
27:06 Dealing with sensory overload and invisible challenges
33:00 Unknown dangers in contact sports
40:24 Navigating neurofatigue and noise cancellation technology.
50:24 The Book: After The Crash By Kelly Tuttle
1:00:27 Different learning curves
1:06:46 The hardest thing about TBI
1:07:37 What has TBI taught Kelly Tuttle
1:09:36 A piece of advice from Kelly Tuttle

Transcript:

Introduction – Kelly Tuttle

Bill Gasiamis 0:00
Hello, everybody, this is episode 299 my guest today is Kelly Tuttle, a neurology nurse practitioner who is living with an acquired brain injury that occurred not as a result of a stroke but rather from a traumatic brain injury. Also referred to as a TBI, which was caused by a rather dramatic automobile collision.

Bill Gasiamis 0:25
Her story and the challenges she is working to overcome bear a remarkable resemblance to that of a stroke survivor with some distinct differences in the way her diagnosis came to be. But a lot of similarities in how daily life has been impacted by the injury. Kelly recently published her book After the Crash, which is a guide for those navigating the challenging journey of recovery after a traumatic brain injury. Kelly Tuttle, welcome to the podcast.

Kelly Tuttle 0:58
Well, thank you for having me. I’m excited to talk to your listeners today.

Bill Gasiamis 1:01
Thank you for being here. You’re not a stroke survivor. And that’s okay. Because we don’t necessarily want everyone to be a stroke survivor who joins us on the podcast. But you are a TBI survivor. You had a traumatic brain injury at some point in your life, can you give us a little bit of an understanding of how that came about?

Kelly Tuttle 1:23
So I was driving home from work down a rural road and the driver pulled out in front of me at the last minute. And I ended up T boning them and being in a big car accident and thought I would shake off the car accident and get back into life. And as time went by, I found that was not the case.

Bill Gasiamis 1:52
So in the collision, how many people were in your car and how many people were in the other car?

Kelly Tuttle 1:58
Fortunately, no one was with me. And I think there was only one person in the other car.

Bill Gasiamis 2:05
I and if you T boned them. Did you touch them on the driver’s side or the passenger’s side?

Speaker 1 2:13
I hit the driver side of the other car I think the driver side.

Bill Gasiamis 2:21
And then what happens then? Do all the emergency services turn up? What’s the scene like after that?

Speaker 1 2:28
I was pretty terrible. Yeah, there’s glass everywhere. My car ended up being totaled, my engine was smoking, people came out from the homes that were along that street, traffic was stopped, and then I did say an ambulance came out, and then the police officers of course investigated the the car crash and since my car was not drivable, it was towed away.

Kelly Tuttle 3:06
I was taken with the police officers to kind of a local cafe to hang out waiting for my husband to pick me up because I was about over an hour away from home at the time so they couldn’t just leave me on the side of the road to wait to get picked up.

Kelly Tuttle 3:28
And I was offered to be taken to by ambulance but because of my nursing background, I did spend some time in the emergency room as a nurse. I just didn’t want to go by ambulance. Which you know, in hindsight was probably not too smart, but 2020.

Bill Gasiamis 3:52
Yeah. Is that because you thought I was not unwell enough? Or somebody else is probably going to need that ambulance that’s in more serious harm than me.

Kelly Tuttle 4:06
No, it was more of I know what happens to people in car accidents they usually get placed on a C spine board and a C collar which is extremely stiff so you can’t move your head and then you’re left on that board in the emergency room until a doctor can come and see you and they do a CT scan of your neck to make sure you don’t have a cervical fracture. And then you get released and examined for other injuries and I didn’t want it. No one did what I did. Please do not listen to what I just did.

Bill Gasiamis 4:53
I’m gonna gotta pick this scab a little further now Kelly. So you’re a nurse how many years in nursing at that stage?

Kelly Tuttle 5:09
Close to 3027 years, something like that.

Decision-making after a car accident

Bill Gasiamis 5:13
And if you turned up on the scene, and there were another two people on that scene that were involved in their collision, and you were just a passerby, you would have said, I’m a nurse, everyone doesn’t do anything, don’t move, lay flat, do this, do that you would have taken control of the situation, you would have made sure don’t move your neck, you would have said all these things, you would have checked out everything.

Bill Gasiamis 5:36
But somehow that doesn’t apply to you. Because and don’t get me wrong, I see this, across all the people who I interviewed their stroke survivors, they might have a whole bunch of different backgrounds. But they never wake up in the morning thinking I’m going to have a stroke today so therefore, I’m going to do all the right things.

Bill Gasiamis 5:57
They always think it’s not going to happen to me. So you know that the procedure to protect the neck to make sure there are no fractures is to potentially save a life, and make sure that a disability doesn’t happen. Make sure that the person doesn’t end up not walking, or not being able to participate in life, etc. There’s a whole bunch of reasons why they do it. Did you feel well enough? And you made a decision based on how you felt that none of those things were necessary? I’m okay.

Kelly Tuttle 6:33
Well, it’s not like I had clear thinking. You know, your adrenaline’s going, you’re working off adrenaline. I’m not sure to this day, if I had lost consciousness. Obviously, in hindsight, I had a brain injury. And all I went into was thinking, not that it was good thinking, I’m not saying it was, I’m going to shake this off, I’m fine, I am gonna go to work the next day, I can’t take time off I was training for my third degree Black Belt in karate, and I’m training for the purple belt in Brazilian Jiu-Jitsu.

Kelly Tuttle 7:31
So I had a lot on my plate, and I did not have time to sit and relax. But I also don’t think that my thinking was clear. And I’d like to emphasize that. So if a caregiver or our friend sees this happen to a friend, you really should keep a close eye on them. Because they may not be thinking right, their brains not working right.

Kelly Tuttle 7:59
It’s, you know that it’s had an injury. So they’re not going to be making good decisions. Myself, I lost my self-awareness. So I wasn’t aware of my limitations. I kept trying to push myself. I ended up falling asleep at the wheel down the road because I was suffering from Neuro fatigue, which stroke survivors are very aware of.

Bill Gasiamis 8:26
Yeah down the road usually about months later.

Kelly Tuttle 8:31
Yeah, I think a couple Yeah, it was like two or three months later that around that period, I had fallen asleep at the wheel.

Bill Gasiamis 8:41
We’ll talk about that as well then. So you’re tough as nails, you’re Brazilian Jujitsu, you’re 3rd Dan black belt, martial artist. You’re, you know, you’re an alpha personality. I mean, nothing is getting in the way of you shaking this off and walking away and going back to business as normal.

Bill Gasiamis 9:07
It completely makes sense to me. And I get the stories, almost exactly. Identical story for somebody who’s had a stroke, you know, I’m gonna shake it off, I’ve got work to do, I’ve got appointments to get over that stuff to do. Everyone’s got stuff to do everyone’s busy. And they can’t possibly comprehend that this thing is something that they need to attend to the numb leg, or the dizziness, or the sinking feeling in the gut or, you know, these strange things that they’ve never experienced before.

Bill Gasiamis 9:38
They don’t have a reference structure to be able to go, Hey, this is familiar to me. I know what this is. I’m going to do something about it and you might have to be a nurse or you see the other end of it. You see people turn up to the hospital, but you have never been the person who’s becoming the patient.

What caused the traumatic brain injury (TBI)

Bill Gasiamis 10:02
You’re never seeing that part of the process. You’re just seeing the person on the other end of that process. So you’re making the wrong decisions, in hindsight, but the right decisions in your mind at the moment. How do you think you sustained the actual brain injury? Did the airbags go off? Did you hit your head anywhere?

Kelly Tuttle 10:24
Yes, the airbags went off. I had bruising on my forehead. So I knew my doctor could tell there had been an impact. And so you know, when I looked back and was researching brain injuries and how to recover, I realized I had the acceleration-deceleration type injury where the brain when you’re suddenly stopped, will slam against the front part of your skull and then bounce to the back and then maybe a couple more times.

Kelly Tuttle 11:05
But in my car accident, I had not only T-boned the person, but my car twisted, and I think I got a little bit of that torsion-type injury along with that. And so that, as you know, can cause mayhem in the brain. There, I did eventually down the road, I had a specialized MRI and I did notice it did account for diffuse axonal damage.

Kelly Tuttle 11:43
And that’s when the little connections between the brain cells and neurons are severed. And so that that did show up. And I just think kind of, you know, that’s what you would find on that type of injury. So people should be aware of if they have a fall, anything that sudden, you know, sudden stop, you steal it from an acceleration, deceleration quickly. And then any fall that there’s some twisting going on, is going to make recovery a little bit tougher.

Bill Gasiamis 12:23
axon damage, is that localized? Or is it spread over a large area? Do you are you able to sort of know, to what extent that damage has occurred?

Kelly Tuttle 12:35
Not me, I don’t know how to read MRIs. It was just read on the MRI report, and I imagine it is a generalized injury, as opposed to an ischemic stroke where it’s more localized.

Bill Gasiamis 12:53
Okay. So could be a lot more of the brain impacted than what might happen in a bank to the head, that is just direct the director to one location. So for example, if you just hit your head, on, on a window on a car windscreen in a slower collision and collision that wasn’t so dramatic, you might have just had localized damage. But in this case, you’ve not only hit your head forward, but your brain may have hit on the inside at the front of the skull.

Bill Gasiamis 13:31
But also at the back of the skull. And then the twisting also created an additional layer of the challenge of damage to the brain. So when you finally realized that things weren’t right, was that soon after your husband picked you up? How did you finally realize that this collision, I’m not shaking it off? It hasn’t been? What I thought, I’m not going to just walk away from this.

Intro 14:03
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 14:27
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions To Ask Your Doctor About Your Stroke.

Intro 14:46
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

Kelly Tuttle 15:06
Um, it was the biggest thing that was a trigger was I went out to lunch with one of my nurse practitioner colleagues who was working in neurology. And she was curious about my recovery, and thank goodness. And she asked me how I was doing. And I mentioned that I had fallen asleep at the wheel. And she was like, what? You fell asleep at the wheel? And I was like, Yeah, I fell asleep at the wheel.

Kelly Tuttle 15:37
So now I have to take a nap, you know, halfway in between work and home. And good things. That’s okay. Well, first of all, who thinks it’s okay to slightly close your eyes and put your head back while you’re driving? I did that, you just don’t think clearly, you know? And so, fortunately, she said, that’s not okay.

Kelly Tuttle 16:05
She was very nice about it. But she’s basically like, that’s not okay. You need to get a head CT, I still haven’t had any head imaging at this time. You need to see a neurologist and you need to see a physical medicine rehab doctor, and she said, PMR, I was like, what’s PMR? And she’s like, Oh, it’s a physical medicine and rehab doctor, and I’m like, Oh, okay.

Kelly Tuttle 16:35
And it turns out, you know, I went to school and learned, they were for psychiatrists. And now they’re known as physical medicine, rehab doctors. And as you know, they specialize in injuries to the central nervous system in the brain and spine. So they’re the person you want to see, after a head injury or a stroke. For sure, rather than then a neurologist, people think, oh, I should see a neurologist.

Kelly Tuttle 17:05
Well, I’m a neurology nurse practitioner. And what I learned is that they take care of people with brain diseases like Parkinson’s, multiple sclerosis, and epilepsy, so they’re not going to be too much help for someone with a brain injury, or a stroke.

Kelly Tuttle 17:25
Because stroke is also like, seriously, the foundation of recovering and preventing a second stroke is a lifestyle, right? You gotta have the exercise gotta eat well, you got to have your numbers looking good. If you have diabetes, that needs to be controlled, if you have hypertension, that needs to be controlled, your cholesterol has to look good. You know, and that’s a lot of lifestyle stuff. And your primary care doctor, your regular physician is very good at helping you with that.

Common issues in seeing a neurologist

Bill Gasiamis 17:57
Okay, this is a really important thing that you’ve just said, because I have so many conversations with people who saw the neurologist, and they’re just perpetually frustrated with the fact that they don’t do anything. And they can continuously complain about the fact that I went to the neurologist, and the neurologist was useless. That can’t be useless. Neurologists know a lot of things about brands but what they are struggling to do is guide somebody on the path towards recovery, like what should I do? How should I do it, etc.

Bill Gasiamis 18:33
That’s the thing that they struggle with. Stroke survivors go there looking for answers thinking that this person will advise them on what might have caused the stroke. If it was an ischemic stroke that doesn’t seem to have a cause, for example, where the damage is what they can do to rehabilitate it.

Bill Gasiamis 18:53
If there’s no information like that then you just don’t seem to be able to do that. We’ve got through now almost, this is probably 298 episodes, and I still haven’t been able to help people with what to do next. If your neurologist can’t help you, so just so we can emphasize it. Stroke Survivors should be seeking out the assistance of a physical, what was it?

Physical Medicine Rehabilitative Doctor

Kelly Tuttle 19:23
Medicine Rehabilitative Doctor PMR is usually what you may hear their title being and they are really good stepping stones to getting you to the right care now. There are different strokes as you are well aware bill, there are people who can get discharged who are discharged to read have facilities because they need intensive care, which I always recommend, if you’re discharging doctors say, you should go to a rehab facility because the, the physical therapy, occupational therapist, speech therapy is so intense, it’s gonna make a difference in your recovery.

Kelly Tuttle 20:24
But if you’re one of those people who has a small stroke, then you will get discharged home. And, you know, if you have a stroke, that doesn’t affect, like, a side of your body, maybe it just affected your speech for a little bit. And now you’re having maybe some cognitive issues with like problem-solving or speaking, then outpatient, we should also see those specialists, like the speech therapists, occupational therapists, the physical therapist.

Kelly Tuttle 21:10
If you do have some mild issues, like some hand weakness, or some leg weakness, your physical therapist is going to help you with that, if you have balance issues, your neuro therapist is going to help you with that they’re amazing also. And don’t miss out on those therapies. They’re so important, and they’re so specific to what’s going on with your brain. So they’re wonderful professionals who have amazing input to provide for you and your family.

Bill Gasiamis 21:51
Yeah, lovely bits of advice there, we’ll make sure that people can go to the show notes and get the lowdown on that and find out if they have somebody near their area, or be able to look for the names and the titles of those people and then see whether or not they can go there. Go to their local Google and search for those types of services if that’s what they need.

Bill Gasiamis 22:19
So your husband has come to pick you up. We haven’t got to the stage where you’ve finally gone home. A couple of months later, a little while later, your amazing colleague says something’s not right. But in that time between the collision and your colleague going hang on a sec. This is not right. Did you go back to life as normal? Was life? Okay? Was there some signs in hindsight that things were not right other than the fatigue?

Kelly Tuttle 22:59
Ah, yes. So I went to work the next day. And my friend, one of my friends drove me. And when I got to a meeting, I was meeting with a large group of nurses. They all noticed that I wasn’t acting right or speaking correctly. We were gonna go take a break. And so I say, Hey, let’s go out and get some Star Track. And they’re like, What, and I was gonna get some Starbucks. And they, you know, we laughed it off, but I did get the you will see your doctor tomorrow.

Kelly Tuttle 23:41
Speech. And I did. My doctor diagnosed me with a concussion and took me off work for two weeks. And I thought, I got this feeling that I was supposed to do better in two weeks, and I can go back to life because remember, I was in I was biting at the bit to keep training for my black belt test. Yeah, and so I was so yeah, I went back to training, working at anything, you know, that I had on my plate at the time I was still trying to address and I found that I had difficulty doing Katas that I had been doing over and over again for 13 years prior.

Kelly Tuttle 24:34
And I tell my foot to move forward it would step back. I used to train for hours and I couldn’t even do a Kata for two minutes without being short of breath and having a massive headache. My husband was helping me train he called out a Kata and the name of the Kata. And I was too mediately do and I wasn’t, you know, remembering the moves or what to do, or I was mixing up the names of things I had been doing for over, you know, 10 years.

Bill’s Book: The Unexpected Way That Stroke Became The Best Thing That Happened

Bill Gasiamis 25:17
We’ll be back with my guest in a minute. But first, let me tell you about my new book called The Unexpected Way That Stroke Became The Best Thing That Happened. When you move past the triggering title, you can read a book, which is about the 10 tools for recovery and personal transformation after a stroke.

Bill Gasiamis 25:37
It tells the story of 10 stroke survivors and the steps that they took, that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection filled with many opportunities for growth and personal transformation.

Bill Gasiamis 25:56
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. To grab a copy, just typed my name, Bill Gasiamis to the amazon.com search bar.

Kelly Tuttle 26:17
So those were some signs. I also had difficulty with my memory, I would review one of my patient’s charts in my office and then go to see my patient. By the time I saw my patient, I had forgotten everything I reviewed. And so I had to take notes and carry the paper with me to the room to remember what I had just read. So there is that memory issue. I also started wearing headphones, because the conversations outside my office that I normally was able to filter out I couldn’t handle anymore.

Kelly Tuttle dealing with sensory overload and other invisible challenges

Kelly Tuttle 27:06
And so I started wearing headphones just to kind of block that so I could concentrate. I had light sensitivity and I had dizziness and nausea. Whenever I would work on a computer or scroll up and down on my phone, and I couldn’t watch the TV, it was too bright, it was too loud and things moved too fast on it. So those were a few of the things that happened in the beginning.

Kelly Tuttle 27:48
And then I ended up failing my third-degree black belt, of course, you know. And I was upset about it. And my normal personality would be I’d be upset for a couple of weeks. And I’d say I’m gonna pick myself up, I’m gonna do this and I’m gonna even do it better. But I was so emotionally upset about it six weeks later. That is so not me. You know. And so I had a lot of emotional issues, and irritability and anger and stuff. And you know, when you look back Well, those are symptoms of a brain injury.

Bill Gasiamis 28:29
Everyone listening here is just relating with you. Everyone’s just holding their heart going oh my god, Kelly. We know what you went through. We get it what’s your self-talk like? Because you know, your two weeks at home, I’m going to be better than I go to work and then things are not good. And then I can’t get my next Dan level kind of over the line.

Bill Gasiamis 28:57
I can’t do all these things. What are you saying to yourself other than being emotionally upset six weeks after you’ve failed your black third Dan What are you saying to yourself? Are you looking at yourself in the mirror and going through with you or how do you go about life when everything is so flipped upside down and you’re not recognizing this version of yourself?

Kelly Tuttle 29:27
Well, first of all, I was I didn’t have that self-awareness. So I couldn’t even go this is not me. That took a long time to come back. And I And and it was one day I tried to go back to the dojo to train and I laughed upset just, you know, demoralized and I went home and I was like This is not me, something’s wrong. And I went back and I read all the paperwork that I had had from the concussion and stuff that I looked at to help get better.

Kelly Tuttle 30:11
And I realized, oh my gosh, I’m getting worse, not better. And so then I sat down with my husband, and I said, Yeah, I think I’m not better yet. And he goes, Yeah, you’re not, your brains not right. So I was like, why didn’t you say something to me this whole time? And he goes, I didn’t want to hurt your feelings.

Bill Gasiamis 30:51
What a legend.

Kelly Tuttle 30:53
Yes, yes. And so that’s when I, you know, started to that. And then shortly after that, I talked to my colleagues and said, hey, you need to get seen by specialists get the head scans, and so forth.

Bill Gasiamis 31:08
Your husband was afraid you were gonna put him in a headlock or something?

Kelly Tuttle 31:12
Probably.

Bill Gasiamis 31:17
Oh, my gosh, I’m gonna let you continue the conversation, your story in a minute, but your sensei is probably going, Who is this person? What is going on with her? Why is she no good all of a sudden, she was my perfect student, she, you know, she’s done everything, she’s a lethal weapon. And now she’s not thinking straight, she’s not able to achieve anything. Was your sensei giving you any feedback? Were the people in the dojo giving you any feedback?

Kelly Tuttle 31:51
You know, what I have thought about that. And I thought, you know, they had some students that were training along with me, and they had injuries, broken foot, and, and so forth. And they modified their tests for them. They were able to pass their tests after the modified test and accommodations for their injuries. But they didn’t do that for me.

Kelly Tuttle 32:22
And now looking back, knowing what I know, I realize it’s because my injury was invisible, and that they were not knowledgeable about concussions and brain injuries and how they can affect their students. So that’s a knowledge gap. That is out there. And I realized after the fact that they just didn’t know they had no idea. I mean, I didn’t have any idea. So I was having a hard time explaining. I just kept saying, Oh, my neck hurts. I have a headache.

Unknown dangers in contact sports like TBI

Bill Gasiamis 33:00
I’ve had a couple of guys on the podcast who are BJJ practitioners, and they both had a stroke because of a carotid artery, or dissection because of a choke. That particular injury seems to be common in the sport. However, people within the dojo don’t understand what choking somebody could do to the neck, or the blood vessels today, or down the track a few days down the track, there’s no awareness whatsoever.

Bill Gasiamis 33:38
It’s a big issue. So that’s why I asked, I was just curious. And I didn’t expect you to say that I of course, they were completely aware of what had happened, and they were onto it and all that kind of stuff they couldn’t possibly be they’re not medically trained at all. And they don’t understand what it looks like to have an invisible neurological condition unless they’ve had one.

Bill Gasiamis 34:02
And unless they spent so much time like you and me writing books about it, and being on podcasts and interviewing people and all that type of thing. So we’ll give them the benefit of the doubt will, will, will say look, that makes sense that they didn’t respond. Your husband also is in the same situation, you know, he’s just going along.

Bill Gasiamis 34:26
Life as per normal, thinks you’re a little bit off, doesn’t want to say anything. Because he’s not certain doesn’t want to upset you. But eventually, he says something. And then how does the next part of the conversation go? What happens after he says I didn’t want to want to hurt your feelings.

Kelly Tuttle 34:47
Like why did you tell me it’s like, Well, I kind of tried, and he did. He said, Hey, I don’t think you should continue training. I think you should take a break. I don’t think you should go and do your testing, but I didn’t hear it because I was just like, I want to meet this goal, I’m in the best condition fighting strength that I’m at, you know, because I’ve been training, I was, you know, trained 13 years, but I trained intensely the year before.

Kelly Tuttle 35:19
And I didn’t want to give that up. And, but he did try. And then the other thing was that I was having to sleep a lot. And I was sleeping like 1214 hours a day, and taking two-hour naps, you know, on the weekend, and then I go to work, come home, go to sleep, and then wake up, go to work the next day and do it all over again.

Kelly Tuttle 35:48
And so what happened was, all the childcare and the household stuff fell on him all of a sudden, and he, you know, was very overwhelmed. He’s just like, where’s my partner, you know, it took her away and replaced her with this person who is not so nice to get along with. So he’s also not thinking clearly because he’s just trying to be there for the kids and stay on top of the dinners and laundry and all that stuff, too. So it was a rough couple of years. In the first two years after my brain injury,

Bill Gasiamis 36:33
yeah. Did your husband at the time? Notice that it was all this stuff started after the collision? Was that dot kind of realized? She’s not been the same since that collision. Did that happen at some stage? Or was that an aha moment later on?

Kelly Tuttle 36:55
I think he noticed it right away. Yeah, cuz he was the one with a brain that was working.

Bill Gasiamis 37:04
Yeah. I know. I mean, like, it’s so relatable all the stuff that you say, because no matter because stroke survivors all have their version of a TBI. And we’re all sensitive to light. We’re all sensitive to sound. I was out at the most amazing place in Melbourne today, yesterday with my wife. It’s overlooking the river. It’s under some massive beautiful trees, it’s outside, there’s tables.

Bill Gasiamis 37:36
There’s a restaurant there. You know, it’s nice and thin. When I say nice and thin, you know, it’s maybe only about six meters deep, but it’s very, very long. And it’s on the most amazing riverbank. There are people everywhere, it’s a beautiful, sunny autumn day. And they’ve got music. On the above our heads in the in the trees, the speaker’s net, and There’s music everywhere.

Bill Gasiamis 38:06
And it’s chilled. But down below, there is a barge. And so the place is called Arbery. So it’s called Aubrey because it’s under a whole bunch of trees. However, just the, on the river, where the path is where the sidewalk is where people walk along the river, there’s a floating version of it, they call it bribery of float. And they are the same business but different venues.

Bill Gasiamis 38:34
And they’ve got different music playing on the float right on the barge. And it’s pumping over there. Everyone’s having a good time. And they’ve got music on this side. And I’m losing my mind. And Christine says, all of a sudden, she says, You these guys, they should just switch the music off from one of these venues because we can’t hear both of them correctly.

Bill Gasiamis 39:01
And just as soon as she says it. I’ve just gone. Oh my god. That’s why I’m losing my mind here. I can’t cope. It’s too loud. And on my left ear, I’m getting this sound on my radio, I’m getting this sound, and the mash of him is just driving me bananas. And I’m just not enjoying myself and I. And I said to her about 10 minutes later, our meal hadn’t come yet. So we’re still waiting to eat.

Bill Gasiamis 39:27
And I said to her, I can’t get what you said about the music. Now I’ve noticed that I can’t get it out of my mind. It’s driving me bananas. And we just sit in there. And she’s going oh my god, what sort of a date would this have been if we were meeting on a date I would have left you here. And I was acting all strange and being weird and I couldn’t sit down. My left-side deficits were playing up because it was a little bit warm. I was just I was just not I was like fidgeting. I couldn’t sit still I couldn’t do anything.

Bill Gasiamis 39:59
And I still look I don’t know what’s going on. Well, I know what’s going on. But coming back coping or can’t deal with all this, anyhow, the meal came, we ate, of course, her meal came first mine took another five minutes to come I ate after her. And then finally, when we got the meal done had to get out of there, we just got up and left. And I realized, and we were walking around the central business district in Melbourne.

Navigating neuro fatigue and noise cancellation technology

Bill Gasiamis 40:24
It was a Saturday afternoon, and it was pumping those people everywhere, it was a beautiful day, and all the cafes were filled. Our business district is also very heavily residential. And we were, we had done a fair walk. So I said, so we were going to hit towards the car and I said to her I don’t think I can walk towards the car, I’m stuffed, let’s just go and find the closest spot to sit down and have a coffee.

Bill Gasiamis 40:24
And we sat down at this place, which is technically what we had been doing all day, just walking and sitting in places having a snack, a coffee, whatever. But I couldn’t get back to the car. And I said, well, let’s just go and sit somewhere we sat down. And I think we just sat there, we had one coffee, we dragged it out for about an hour as long as we could drag it out.

Bill Gasiamis 41:14
And then I kind of recharge my batteries. And then we walked to the car. And that’s me every day like, my day has to be strategic. I I’ve lost that ability to wake up in the morning, and just do all my things and not hit those walls that just turn up out of nowhere. And I’m 12 years, you know, 12 years out. So it’s a really interesting thing to observe how my day went yesterday was still a lovely day.

Bill Gasiamis 41:53
But my wife doesn’t see my deficits, rather, she doesn’t see my deficits either. And every once in a while, it catches her off guard because everything is normal. And I was freaking out because the music is different. She’s just going oh my god, you wait, what are we going to do? I’m like I don’t know we’ll get it. It’ll be fine. We’ll just get through it. So strange, though.

Kelly Tuttle 42:21
Yeah. So when I was researching for my book, what I learned is that a lot of cognitive fatigue, or neuro fatigue, that was neuro fatigue, what you’re having is related to the brain wanting to run efficiently. And so these researchers were looking, they were using MRI imaging. And then you know how, if you have a brand new car and it’s running, it runs efficiently.

Kelly Tuttle 42:50
And then if you compare it to an older car that wasn’t taken care of as maybe hasn’t had an oil lube and 50,000 miles or something you put the same amount of gas well the newer cars just going to use up less fuel to get to a to b whereas the older car the that has been taken care of uses up more fuel Well that’s the same thing with the brain, the brain likes to run efficiently when it has damages, broken connections, cell debris and needs to clean out.

Kelly Tuttle 43:27
If it’s spending energy on Neuroplasticity, building up those connections, then it has less energy for things like visual filters. That’s why the sounds of the light seem to be audio filters. Because it doesn’t have the energy to block that out like you and I were able to do before our brain injuries. And the other thing too is sometimes with a brain injury, the brain loses the ability to differentiate between sounds.

Kelly Tuttle 44:09
So you suffer from sound overload and it gives dual attention to all sounds from the music to the conversation you’re trying to hear to the baby crying across the restaurant and it’s just overwhelming whereas before your brain would be able to go want to listen to this conversation. We’re gonna dampen this background noise you don’t have that anymore.

Bill Gasiamis 44:36
I love how you described that it gives dual attention to both sounds.

Kelly Tuttle 44:44
Yes, and the way I survived that because I still have sound sensitivity is through noise-canceling technology. Yeah. And there their headphones and earbuds that you can put into your We’re cancel out that sound. And they’re so advanced, they can kit you can connect them to your smartphone and control the amount of sound coming in via the app.

Kelly Tuttle 45:15
And those have been lifesavers for me, with that device, I’m able to hear a conversation with a friend better in a love restaurant, or even on an airplane, they assist me in hearing conversations because it’s cutting back that you know, the engine noise.

Bill Gasiamis 45:36
Are they small in size, are they as big as the headphones that you’re wearing now?

Kelly Tuttle 45:41
You can get both, I do have some smaller ones, but I would love to pull them out. But then they’ll activate and get my fun times. But you could do the small ones and just slip those into your ears, you know what else you can do. If you are working in a loud environment and you need to focus, you can put on these earbuds in turn the noise canceling on.

Bill Gasiamis 46:43
So that’s all right.

Kelly Tuttle 46:45
My earbuds

Bill Gasiamis 46:47
They did do that they connected.

Kelly Tuttle 46:52
Yes. But let me see if I get my get my video back up. But you can wear the earbuds and the headphones on top. And this will increase the sound control around you and allow you to focus. Say, if you’re writing a report, and you’re in an open workspace or your student you’re studying, you know, in a study hall or outside instant noises are breaking your focus. These are great tools to save your life. And when you utilize them, you are allowing your brain to save energy to not have to spend on blocking out these external noises. And you’re able to use that energy instead to focus on what you need it to or the tasks that you’re working on.

Bill Gasiamis 47:51
I love what you’re saying there, I used to take headphones, like the ones that you’ve got on, I used to take them to work and just put them on without switching music or anything that was just to keep my head feeling a little less overstimulated. And then recently, I discovered there’s a brand of earplugs called loop earplugs.

Bill Gasiamis 48:16
I’m gonna have a link in the show notes that just the earplugs but they’re able to have three different settings and change the level of noise canceling that they do. And they’re designed so that you can go and play, listen to a concert, and have a certain level of cancellation.

Bill Gasiamis 48:37
And you can be in a crowd and you can be in all these places. So for anyone watching and listening, just go to the show notes and see those links. I think they’re cool because they’re little, they’re inconspicuous. They just look like you’ve got a normal Apple or whatever brand earpieces in. And that’s it. You’re good to go. I love it.

Kelly Tuttle 49:01
I have a set myself.

Bill Gasiamis 49:03
Yeah, that’s good. Hey, you wrote a book. What’s cool is that you and I, we’ve got a lot in common. It’s that, that it’s that even though you’ve got like a head, that’s a little bit messed up, you’re always about solving problems, you’re looking for solutions, you’re looking for ways to help other people and give people information and tools. And I’ve got this download on my website.

Bill Gasiamis 49:31
It’s called several questions to ask a doctor after your stroke. And it’s been around for ages. It might be a little bit out of date and might need a couple of updates. Nonetheless, it has questions that you can take, you can print off and you can take it to your doctor. And you can say, all right, when did the stroke happen? What does that part of the brain do? And so on and who else can I see what other doctors do I need to visit etc?

Bill Gasiamis 49:58
People contact me and let me know how life-changing having those seven questions, even though they might not all be the correct ones for them, because it starts a conversation that they never could start before and then that usually sits them down the trajectory of knowing to ask certain people certain questions.

The Book: After The Crash By Kelly Tuttle

Bill Gasiamis 50:24
And you’ve got a similar download on your website. We’ll talk about that in a little bit. But I do want to talk about the book After The Crash. Tell me a little bit about it. How did you get to the point of deciding that you should write a book about this situation, and what is the book, mentor accomplish?

Kelly Tuttle 50:46
So I didn’t come up with the idea on my own, I had another great friend recommend that I write the book. And so I just put it on the little to-do list and then five, at my fifth anniversary of my car crash, I decided to start writing the book. And the reason why I wanted to write the book was, my goal was to get back to work as soon as I could, because I was the single-income earner for my family, and I earned the health care benefits and so forth. And so I needed to get back to work.

Kelly Tuttle 51:21
And I wanted to get back to work. And I remember the first couple of weeks, like before, I was supposed to go back to work freaking out, like I don’t know, what I need to make my return to work successful. I don’t know how I’m gonna handle this, I don’t know how this is gonna go. And I had some great books on how to recover from a brain injury that I learned from but they weren’t niched down to returning to work what you need to return to work. So that was my goal, I wanted to fill that niche.

Kelly Tuttle 51:59
My book would focus on supporting you in returning to work or studying while your brain healed. And so it talks about brain injury symptoms, common brain injury symptoms, and the specialists who can help you with it. Because I also didn’t want to say, yeah, you can have dizziness after a brain injury, but not say, what to do next. Some books don’t say what to do next.

Kelly Tuttle 52:30
And I wanted to answer that question. And so I do have those answered in my book. And then I share all the strategies and compensatory tools that I had learned to support my successful return to work. And that’s the main part of the book. Then at the end of the book, I had five strategies to get back to life and to support my brain’s healing.

Kelly Tuttle 53:03
It talks about mindfulness, nutrition, sleep exercise, here in America, the American Disability Act, and we Family Medical Leave Act that helps protect your job when you take time off work to heal from an injury or a serious illness. And I also have ways to ask for accommodations for your disability from your employer, and then I talked about finances, which is important.

Kelly Tuttle 53:42
If your finances aren’t healthy, then you’re not going to feel healthy, or you’re going to have a harder time getting better if you’re stressed out about paying the bills. And then I talked about at the end, about letting go of the old things that you were in the past, before your injury, and how to embrace the new, the new you and your new brain.

Bill Gasiamis 54:08
That sounds amazing. Thought of things that a lot of other books have been thought of. And I think it’s going to be helpful for people to be able to access a book that has some information, again, to start thinking about solving problems that seem unsolvable. Especially when your brain is not working properly, and you’re trying to get through to the next stage.

Bill Gasiamis 54:30
This has been a great book for caregivers as well, family members, loved ones, partners, and all sorts of people will be able to benefit from that because if like you and I our partners are taking up the slack, then they might benefit from knowing which direction to hit. And that might make it easier for everybody, including family. So that’s cool. How long did it take you to write?

Kelly Tuttle 55:07
I started in 2020. It was published at the beginning of 2023. So I’d say about two and a half years to get it written. And I wrote it along with a self-publishing company. So they had writing coaches. And so, which is great, because I’m a nurse practitioner, I don’t know how to write. I didn’t know anything about marketing, or social media accounts, those kinds of things. And so they helped me out with that. And I think that helped with my brain healing, too, with all that additional learning.

Bill Gasiamis 55:51
Yeah, it does help for sure. I wrote my book took four years from concept to research to writing, it was the hardest thing I ever had to do. I mean, I don’t have my ability to process words and all that kind of stuff fatigues me, the usual stuff, you know, I’ve got to find ways to get through that while I’m in the zone in the writing zone, but then I get fatigued. It was a real challenge.

Bill Gasiamis 56:19
And I had a book coach as well because there was no way I was going to be able to do this somewhere, nobody would have said to me, how’s the book coming along? I would have said I, it’s not, you know, forget about it. I’m not doing it anymore. Yeah, I’m so glad I did it, though, your book has very, a few things that my book has in it. So three of those topics, nutrition, sleep, and exercise, are in my book as well.

Bill Gasiamis 56:45
And What’s cool is, that I wrote the book because the chapters were not chapters that I thought of, I’ve interviewed 10 stroke survivors, and they’ve told me that stroke was the best thing that happened to them. And without crying out without leading them down the path, to tell them why I said that. I got out of them, these 10 chapters. And then when I interviewed the next person, they had they tended to the same 10 things, and the next person, the same 10 things.

Bill Gasiamis 57:17
And what they were, they seem to be universal things that we all need to attend to, to start the healing journey and to sort of give it legs so to speak, so that you start to improve things marginally, on all these areas, and then they all add up. And then there’s a massive difference in improving. And I had this little bit of a aha moment, it was like, Well, okay, that’s what everyone needs to know about.

Bill Gasiamis 57:49
The only problem is that everyone else’s book says the same thing. Everyone has to go back and attend to all these things. And I thought, Oh, my God, I’ve just written another bloody book that everyone else has written the same book. But God’s sake, what’s the point of that? But what is cool is that it’s not the same book, it’s a completely different book like yours, your spin on nutrition, your spin on sleep, and your spin on exercise, will be completely different from mine, but they all attend to healing the brain, they all attend to making the brain stronger and better.

Bill Gasiamis 58:26
And that’s what’s cool about it is that it doesn’t matter where we come from those core 10 things that need to be attended to are universal, and getting different people’s perspectives on how to go about healing your brain. Even though they say the same, they have the same title, for example, at the beginning of the chapter, is important to get a lot of different versions of how to sleep at a lot of different versions that eat better the one so that you can find the one that works for you, and you can get the result that you need, right.

Bill Gasiamis 59:03
And I couldn’t get that result from reading somebody else’s book, for example, but I might get that result from you. And just picking up one thing out of a book that you didn’t know could be the game changer. It could be the one thing that then propels the recovery in the right direction. Now that it’s out, what’s the feedback been like? How do people respond to your book?

Kelly Tuttle 59:35
I’m very well. I’ve gotten several five-star reviews. And I’ve had some people invest a lot of time in to their reviews, and their reviews tell me that my book has reached the goal of my intention. That it’s a you know, they talk about how it’s a companion, because it understands what they’re going through.

Kelly Tuttle 1:00:05
And they talk about some of the things that I had put in my tools and strategies they hadn’t realized or thought about, and now are going to use or wish they had known back when they were dealing with whatever the issue was. They say that it’s easy to read.

Different learning curves especially after a TBI

Kelly Tuttle 1:00:27
And that was my goal, I didn’t want to talk a whole lot about my story, even though sharing your story is important. I wanted to get to the point, you needed to, if you have this, do this, and this, you know, if Yeah, I don’t want to waste anybody’s energy, their brain energy, you know, reading too much of a fluffy story, because I know reading time is limited when you have a brain injury.

Kelly Tuttle 1:00:55
And, that’s why my book is also on Audible, I read it for Audible because I know how difficult it is to read. I’m a big audible user myself and learned that I was able to learn information from listening to books. Before my brain injury, I was very much the person who had to read it.

Kelly Tuttle 1:01:18
I was not an audible, an auditory learner. However, after my head injury, I became an odd auditory learner. And so that was important to me to have both versions of the book available. Because, yeah, in the beginning, that was one of the things I did notice was my ability to read hours on in was diminished down to 5 minutes, 5-10 minutes early in my recovery.

Bill Gasiamis 1:01:47
I always struggled to read for hours on end, I think I had some kind of a, you know, I had a dislike of reading, not because I didn’t enjoy learning from reading, but because books used to put me to sleep literally. And I struggled at school, I struggled ever, I never read a book, I think the first book I read was in my 20s.

Bill Gasiamis 1:02:12
And when we had a book to read for English class, I would make sure the book had a movie attached to it. And we read, we were supposed to read the book, The Killing Fields when I was in school. And it was a book about the Holocaust that happened in Cambodia during the ’70s Khmer Rouge regime, right?

Bill Gasiamis 1:02:38
And I was like, Oh, my God, I’m not reading this book, there’s no chance and there happens to be a movie that came out and I went and read and watched the movie. And then I wrote my paper based on the movie. And I got high marks, and my friends were all annoyed and upset.

Bill Gasiamis 1:02:52
And I’m like, guys, like, it’s the same thing. Like, once the movie, it’s telling the story, reinterpreted you know, get over it, you guys read the book and took ages. I don’t know how long it took you to read the book, but I saw the movie in two hours. And, and that was it, I was done. And I knew from back then that I had a different way of grasping information than learning.

Bill Gasiamis 1:03:14
But of course, back then there wasn’t a lot of stuff available on Audible, there wasn’t an audible, you know, you had to buy cassette tapes, and CDs and all that type of stuff. And I remember the first massive amount of listening that I did, somebody told me to listen to the Tony Robbins cassette series, Tony Robbins has about 7 billion tapes that he made available in one of his programs, I think, Unleash the Power Within.

Bill Gasiamis 1:03:46
And man, I was able to put that in the car while I was driving to work and then just listen to that. And then flip the tape over and then go on and keep listening to that. And I got through his 30 or 40 cassette tapes, quicker than I ever would have got through, say 30 chapters of a book or 30 volumes of a book or something like that. And it was a game changer because information was now able to enter my mind the way that it served me. And I didn’t know that I had this other method of learning.

Bill Gasiamis 1:04:21
So for people who are listening, who want to read and can’t read a book, and perhaps might want to try listening, one of the things that I do now is I buy the book and the audible and I read while the person is narrating the book, and that’s an even better experience because there’s no I don’t have to get tired doing any of it.

Bill Gasiamis 1:04:50
My eyes are just scanning the words so I know what I’m up to. If I need to highlight something in my highlighter, and then I’m listening to the person tell the story it’s just two ways of joining the dots and embedding that information, a completely different experience to just reading or just listening. It’s amazing.

Kelly Tuttle 1:05:09
That is an amazing combo, I would never think to put those two together, I’m going to keep that I’m gonna steal that from you, and share it.

Bill Gasiamis 1:05:17
Yeah, give it a try, Kelly, because it’s just so gentle and easy to do. And you don’t have to think. Because the eyes and the ears are connecting the dots. And it’s just embedding it far better. So how, how thick is the book? Do you have a copy there? Can you hold it up to the camera? How many pages is

Kelly Tuttle 1:05:48
Is it not that many? Over 200

Bill Gasiamis 1:05:57
Yeah, perfect stroke survivors love that stuff. Yeah, brilliant. I love I’ve got the filter on all. I’ll make sure there’s There you go. Make sure there’s a copy of that on the show notes as well.

Kelly Tuttle 1:06:14
But it’s really Yeah, it’s really easy to read. The other thing too is at the end of each chapter, I have like a list of recaps. So if you forget or you just want to quickly look back on something, you can go to that list and it’ll remind you, and yeah, write in it, highlight it. Yeah, you don’t have to read it front to back. You can pick the chapter like I have. I think I have sound sensitivity. Just go straight to that. And get in learning about that.

The hardest thing about TBI

Bill Gasiamis 1:06:46
Yeah. Excellent. You know, with my stroke survivor guests, I asked them these three questions at the end of the podcast episode. So now I’m going to ask you, but it’s relevant. So what’s the hardest thing about traumatic brain injury for you?

Kelly Tuttle 1:07:06
Or me, it’s the fatigue. Yeah, the chronic fatigue, you go to sleep. And no matter how much sleep you get, you wake up. You don’t wake up refreshed. I remember waking up refreshed and bouncing out of bed. I don’t do that anymore. I haven’t since the car accident. And here I am eight years later and still don’t do that. So that is the hard part. Is living with fatigue.

What has TBI taught Kelly Tuttle

Bill Gasiamis 1:07:37
What has TBI taught you?

Kelly Tuttle 1:07:42
Oh, wow. It has taught me to have patience. And it has made me think even more empathetic and compassionate and understanding of others around me. And it has made me more grounded in the present moment. And I spend a lot less time in the past and the future now.

Bill Gasiamis 1:08:15
Has it made you a better nurse?

Kelly Tuttle 1:08:18
Well, you know, before my head injury, I was a cardiology nurse practitioner, I help people with our hearts. After my head injury after two years of learning about the brain, I was able to beg and plead myself into a trainee position as a neurology nurse practitioner. And I do feel it has made me a better provider.

Kelly Tuttle 1:08:45
Because I’ve been there and done that I have the T-shirt. I can hear what my patients are saying and put words to what they’re not getting out. You know, and they’re like, oh, yeah, that’s what I meant. You know, so I’m able to take these big kind of general struggles and say, Oh, you’re having difficulty with hearings because you’re experiencing hearing overload, and then I explain it and they’re like, Yes, that’s it. And so yeah, I feel like I’m a better ambassador between the patient and the care they need.

Bill Gasiamis 1:09:27
Yeah, you’re a translator as well. You’re able to decipher what they mean and put it into words.

Kelly Tuttle 1:09:34
Yes.

A piece of advice from Kelly Tuttle

Bill Gasiamis 1:09:37
I love that. I hate that you had to go through what you had to go through to get there. But I love that you can do that. Other people are listening, that have all had a traumatic brain injury, all my guests and they’ll be someone that very early stage of their recovery, and they get to hear from me and you who are you’re eight years out I’m 12 years out and they’re kind of like, oh my God, like, will I ever be like that? What would you like to tell people who are just starting their journey or even a few years in? What kind of advice information encouragement would you like to offer,

Kelly Tuttle 1:10:18
That there is hope that you will get better. The thing is, is that every brain injury is as different as our personalities. And every road to recovery, therefore, is going to be different. And some of those roads are going to be shorter, and some of them are going to be a long highway. And you just don’t know until you get there. What you need to do is just be in the moment that you’re at, and do the best you can to support your brain healing.

Kelly Tuttle 1:10:51
You will have to learn over time, how to push yourself to help your brain grow stronger, but not push it so hard that you end up what I call regressing in your recovery. And that’s when all your past symptoms are unmasked, and you’re exhausted and you’re in bed for days trying to recoup, get your energy back. So it’s a lot of push and pull. The recovery isn’t a linear line. It’s gonna be like a dance.

Bill Gasiamis 1:11:29
It sure is. Hey, Kelly, thank you so much for joining me on the podcast. I appreciate it.

Kelly Tuttle 1:11:37
Well, thank you for having me. I enjoyed our discussion.

Bill Gasiamis 1:11:41
Well, thanks again for joining us on today’s episode. I hope you enjoyed my conversation with Kelly Tuttle to get a copy of my book about stroke recovery, go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

Bill Gasiamis 1:12:06
Thank you to all those people who have already left a review about the podcast on iTunes or Spotify, it means the world to me. And it makes a massive difference to how people who are looking for this type of content combine it. If you haven’t left a review and you would like to leave one.

Bill Gasiamis 1:12:26
You can do that by going to your Spotify, or your iTunes app, and going in leaving a five-star review and a few words about what the show means to you. If you’re watching on YouTube, comment below the video now this is starting to take off people are commenting, and we’re creating conversations on the different YouTube videos. So it’s great to see I love people who are interacting with my video and I also respond to all the messages.

Bill Gasiamis 1:12:54
Also, if you’re watching on YouTube, like the episode, and if you want to get notifications of future episodes, obviously subscribe to the show. Hit the notifications bell. If you are a stroke survivor with a story to share about your experience. Come and join me on the show. The interviews are not scripted, you do not have to plan for them.

Bill Gasiamis 1:13:14
All you need to do is be a stroke survivor who wants to share their story in the hope that it will help somebody else who’s going through something similar to you. If you have a commercial product that you would like to promote that is related to supporting stroke survivors.

Bill Gasiamis 1:13:31
Come and join me on a sponsored episode of the show. Just go to recoveryafterstroke.com/contact and fill out the form briefly explaining which category you belong to. And I will respond with more details about how we can connect via Zoom. Thank you once again for being here and listening. I appreciate you see you on the next episode.

Intro 1:13:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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 length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas.

Intro 1:14:24
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 1:14:48
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 out guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:15:13
Medical information changes constantly. While we aim to provide current quality information in our content, we did 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 the 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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Understanding Cerebrovascular Accidents

Introduction

In this comprehensive guide, we delve into the intricate details of cerebrovascular accidents (CVAs), commonly known as strokes. As a leading authority in healthcare, we provide you with expert insights into the causes, symptoms, diagnosis, treatment, and prevention of this critical medical condition.

What is a Cerebrovascular Accident?

A cerebrovascular accident, or stroke, occurs when the blood supply to the brain is interrupted or reduced, leading to damage or death of brain cells. This disruption can be caused by a blockage in an artery (ischemic stroke) or the rupture of a blood vessel (hemorrhagic stroke).

Types of Strokes

• Ischemic Stroke: This type of stroke occurs when a blood clot obstructs a blood vessel supplying blood to the brain. It accounts for approximately 87% of all strokes.
• Hemorrhagic Stroke: This occurs when a weakened blood vessel ruptures and bleeds into the surrounding brain tissue.

Risk Factors

Modifiable Risk Factors

• Hypertension: High blood pressure significantly increases the risk of stroke.
• Smoking: Tobacco use damages blood vessels and contributes to the formation of blood clots.
• Obesity: Excess weight can lead to other risk factors such as diabetes and hypertension.

Non-Modifiable Risk Factors

• Age: The risk of stroke increases with age, particularly after 55.
• Family History: A family history of stroke or certain genetic conditions can elevate risk.

Symptoms

The symptoms of a stroke can vary depending on the type and severity but may include:

• Sudden weakness or numbness of the face, arm, or leg, typically on one side of the body.
• Difficulty speaking or understanding speech.
• Sudden confusion or trouble with vision.

Diagnosis

Physical Examination

A healthcare provider will conduct a thorough physical examination, assessing neurological function and vital signs.

Imaging Tests

• CT Scan: This can quickly identify whether the stroke is ischemic or hemorrhagic.
• MRI: Provides detailed images of the brain to detect any abnormalities.

Treatment

Ischemic Stroke

• Thrombolytic Therapy: Administering clot-busting drugs such as tissue plasminogen activator (tPA) can dissolve the clot and restore blood flow.
• Mechanical Thrombectomy: In some cases, a catheter-based procedure may be performed to remove the clot.

Hemorrhagic Stroke

• Surgery: Depending on the severity, surgical interventions such as clipping or coiling may be necessary to repair the ruptured blood vessel.
• Medication: Medications to reduce blood pressure and prevent further bleeding may be prescribed.

Rehabilitation

Rehabilitation plays a crucial role in helping stroke survivors regain independence and improve their quality of life. It may include physical therapy, occupational therapy, speech therapy, and counseling.

Prevention

Lifestyle Modifications

• Healthy Diet: Consuming a balanced diet rich in fruits, vegetables, and whole grains can help control blood pressure and cholesterol levels.
• Regular Exercise: Engaging in physical activity for at least 30 minutes most days of the week can lower stroke risk.
• Smoking Cessation: Quitting smoking reduces the risk of stroke and other cardiovascular diseases.

Medications

• Anticoagulants: These medications help prevent blood clots from forming.
• Antiplatelet Agents: Drugs such as aspirin can reduce the risk of clot formation.

Conclusion

In conclusion, understanding cerebrovascular accidents is paramount in preventing and managing this life-threatening condition. By recognizing the risk factors, symptoms, and treatment options, individuals can take proactive steps to safeguard their brain health and reduce the likelihood of experiencing a stroke.

Cerebrovascular Accident (CVA) Recovery: Full Interview with Jennifer Hale

Jenifer Hale experienced a cerebrovascular accident (CVA) on the day of her 60th birthday anniversary.

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Highlights:

00:00 Introduction
01:58 Having a cerebrovascular accident on my 60th birthday
10:04 Dealing with sensory overload
13:15 Life before the cerebrovascular accident
19:40 Post-stroke deficits and improvements
30:39 Communication and attention span
42:57 The power of positivity
50:13 The hardest thing about the stroke
56:05 A message to other stroke survivors

Transcript:

Introduction

Bill Gasiamis 0:00
Hello, everybody, this is episode 298 my guest today is Jennifer Hale, who turned 60 years old on the day of her cerebral vascular accident also known as a CVA.

Bill Gasiamis 0:14
A CVA is described as a condition where a portion of the brain experiences a lack of blood flow, resulting in damage to brain tissue. This occurrence is typically instigated by either blood clots or ruptured blood vessels within the brain.

Bill Gasiamis 0:30
Symptoms associated with cerebrovascular accidents encompass sensations of dizziness, numbness, or weakness localized to one side of the body, and difficulties in speech and writing, or language comprehension.

Bill Gasiamis 0:45
Now, just before we get started with the interview, let me tell you a little bit about my book for a minute. It’s called the unexpected way that a stroke became the best thing that happened, and it lists 10 tools for recovery and personal transformation.

Bill Gasiamis 1:00
It also tells the story of 10 stroke survivors and the steps they took that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.

Bill Gasiamis 1:19
In the book, there are chapters on nutrition, sleep exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. Grab a copy from Amazon by typing in my name Bill Gasiamis into the search bar. Jennifer Hale, welcome to the podcast.

Jennifer Hale 1:43
Hi, how are you, Bill?

Bill Gasiamis 1:46
I’m well thank you so much for being here. I appreciate it.

Jennifer Hale 1:51
I appreciate you having me.

Bill Gasiamis 1:54
Tell me a little bit about what happened to you.

Having a cerebrovascular accident on 60th birthday

Jennifer Hale 1:58
Okay, um It happened on March the sixth, which was my 60th birthday. I was fine. You know, I was getting birthday calls that morning. By 10 o’clock, my daughter rushed me to emergency because I couldn’t keep my balance, and I was dizzy, and my face kept on slacking.

Jennifer Hale 2:32
But I didn’t think anything serious until we got there, of course. So I ended up having I can’t pronounce it. It was a small blood clot in the left side of my brain. it starts with an I can’t pronounce it.

Bill Gasiamis 2:53
Acute ischemic CVA is what you’ve written here.

Jennifer Hale 2:59
Yes. That’s what it was.

Bill Gasiamis 3:05
It was your 60th birthday. Now, it’s March right now. So how many years ago was that?

Jennifer Hale 3:13
That was the last year 2023, so I’ll be 61 in five more days. Yeah. And this is a kickoff celebration for me.

Bill Gasiamis 3:27
Okay. Are you somebody who has a thing with anniversaries some stroke survivors who, when the anniversary of the stroke is coming up, start to get nervous or start to think about it negatively?

Bill Gasiamis 3:47
But there are a lot of stroke survivors who don’t have a problem with anniversaries at all. They don’t believe that the anniversary means anything other than to mark 12 months. How do you feel about the anniversary that’s coming up? Because it’s supposed to be a celebration because it’s your birthday.

Jennifer Hale 4:05
Yes, it was all sweet. Last year I had maybe six to 10 doctors in the room. Watching me, see what I was doing. And every time they say what’s your name? I tell them my name, what’s your birthday? March 6 1963 and they look. Oh no, that’s today.

Jennifer Hale 4:28
I said no, today’s my birthday we’re gonna celebrate. Just wish me a happy birthday. And I’ll still celebrate. I didn’t feel like I guess to make a long story short, I didn’t want the pity party. I didn’t want anybody feeling sorry for me because I wasn’t feeling sorry for myself.

Jennifer Hale 4:51
I didn’t want anybody. Just say happy birthday, join my party. If you didn’t want to stay you’re welcome to leave but we’re not having a pity party. I still feel that way.

Bill Gasiamis 5:07
Fantastic. It’s a great way to think about it and to go about how to deal with something serious that’s happening on a particular date doesn’t matter which day it is. Whether it was your birthday or not, really does it?

Jennifer Hale 5:20
No, it doesn’t. And then, you know, by being the 60th, that’s a milestone. So I said, I will celebrate and just be breathing still on my 60th birthday. I didn’t have sunrise at 3 63 and sundown at 3 6 2023. No. I’m still here.

Bill Gasiamis 5:52
The way I see it, was 37, when all of the stuff that happened to me happened. And I’m just glad that I’m getting to 50. This year is going to be my 50th. And it’s cool. It’s cool to be here.

Bill Gasiamis 6:09
Because 30 years earlier, I don’t know if I would have got there. That’s the thing. It’s a real gift to have another 13 years. I’m not sure how many more I have. But these 13 have been lovely to have. Some great things have happened, even though there have been some terrible things happened in life just as in everyone’s life. It’s been good to be around.

Jennifer Hale 6:37
Yes well, I appreciate you still being here. Because when I got home, my daughter gave me your information, to get a little bit more of what’s going on with me. So I’ve been watching you for over a year now. And every episode that I catch is just so inspiring. So I’m glad you’re still here too.

Bill Gasiamis 7:06
That’s awesome. That’s lovely. I appreciate that. Your daughter and was that your son that we were chatting with earlier?

Jennifer Hale 7:14
My son-in-law.

Bill Gasiamis 7:18
Tell me about your daughter and your family. How big is the family? Who’s around? What was that like?

Jennifer Hale 7:27
Well, I’m living with my oldest daughter and my son-in-law. And I have three grandchildren here, but I’m a grandmother of six grandchildren. And I have three kids, two girls, and a boy. And they are all in their 40s.

Jennifer Hale 7:47
So has this been a learning experience for the whole family? But I try to keep them informed on whatever I learn about myself, I try to inform them because they’re not used to me in this way.

Jennifer Hale 8:04
But I tell them, this is the new me. And we all just have to adapt to it because I’m surprised just like you. So I’ll just keep everybody informed. Even the kids keeping them informed of what’s going on with me. Yeah, so we’re just in pretty good.

Bill Gasiamis 8:28
And your children? Are they all living near you, the others? I know you’re living with your daughter, but are the others living near you?

Jennifer Hale 8:36
I have a daughter in South Carolina, I have a son in North Carolina. And we’re in Alabama.

Bill Gasiamis 8:46
Everyone’s all over the place. That’s okay. Do you guys get to meet up and catch up and have family events at Christmas or the big holidays?

Intro 9:01
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse?

Intro 9:18
Doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

Intro 9:40
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide, it’s free.

Dealing with sensory overload after the Cerebrovascular Accident

Jennifer Hale 10:04
Well, this year, I kind of opted out of everything because I couldn’t, I’m still sensitive to noise and crowds, and only can take so much light, then I have to have enough light, like, certain times of the day, I need more light then when I’m kind of relaxing, I don’t need that much light.

Jennifer Hale 10:31
But it just depends on my body. So I just follow whatever my body says, and do I respect my body? So I didn’t have any celebrations, which was okay, because I needed to rest.

Bill Gasiamis 10:45
Yeah, I remember opting out of a lot of social events as well. And then, at some stage, feeling like I was missing out, so I would go along for as long as I could. And then sometimes sleep on the bed or the couch. And sometimes just leave early, just go to that place and set the expectation that we’re going to come for a few hours, we’re going to see everybody, and then we’re going to leave and get home early.

Bill Gasiamis 11:13
And that started to get better. After two years, after three years, after four years, everything started to settle down. And I was able to be at an event for as long as I felt like it or as long as I wanted. And fatigue wasn’t the thing that was causing me to not want to be able to go home.

Bill Gasiamis 11:32
And of course, noise sensitivity was an issue. And all the overstimulation from other people’s laughing and chatting and having a great time. That was all a bit too much. And I think it’s the wise decision to say, Hey, you guys have a good time. But I’m gonna rest I’m gonna sit this one out. And then I might see you at the next one.

Jennifer Hale 11:57
Yeah, I saw my grandson, he was six at the time, and he was playing football during the summer. And his sisters were the cheerleaders in their seven, eight, ten. And I missed the whole game, except the last one, I forced myself to go.

Jennifer Hale 12:19
So I couldn’t be sad I went to one. But I had to put earplugs in my ear. And at the time, and get on a cane. And the whole night, when he got to watch I had to go, but I did get to see one of their games.

Bill Gasiamis 12:39
It sounds like it was worth the struggle worth the effort. Yeah, the children would love to have you there. Everyone would have loved to see you out and about. And the good thing about it is you took some precautions, you put the earplugs in, and then you used your cane you did whatever you had to do to get there. And then when it was enough, it was enough.

Jennifer Hale 13:06
It was enough. Yeah, come home. Put the cane to the side and lay down.

Life before the cerebrovascular accident

Bill Gasiamis 13:15
And rest. Were you actively employed when you had your stroke? What were you doing on a day-to-day basis?

Jennifer Hale 13:25
At the time, I was working a part-time job. Going to school full-time online. I was four times, which I still am. I was blessed enough with instructors. Let me they extended my time when I was in rehab to do my work online. And so when they did that, on my left side is my side that went out.

Jennifer Hale 13:57
So I just have my right side. And I was just doing what I could until and I made my dates. And I made my scores my points. And I’m back in school. Back in school now. Last year had a break. Summer break. And I just recently started back eight weeks ago.

Bill Gasiamis 14:22
What are you studying?

Jennifer Hale 14:23
I’m studying Christian counseling.

Bill Gasiamis 14:30
Wow. So how much longer have you got until that’s complete?

Jennifer Hale 14:36
Oh, wow. I just started when all this happened. So it’ll be a while. Maybe another three and a half years? If not four because I’m going part-time now. I’m not doing full-time.

Bill Gasiamis 14:55
Yep. And will that allow you to do what when you’re qualified, what is the hope? What kind of role will you be able to participate in?

Jennifer Hale 15:06
I can, counsel in church, you know, or I can have my place or office in counsel. You know, my goal, what I really would like to do is counsel children and be a part of the younger kids, and growing up and helping them through their decisions and all that kind of stuff. But yeah, I can counsel at a time when I get done.

Bill Gasiamis 15:45
Are you doing Christian counseling? Because you were very active in your local church?

Jennifer Hale 15:53
Well, the church that I attend now is my daughter’s last church. I just got in. I’m not involved still. Once again, it’s hyper, and before I decided on Christian counseling years ago, I used to be very active in a church. And I used to do counseling in the church, but it wasn’t what I expected.

Jennifer Hale 16:24
How can I explain, it was more. It wasn’t enough for me, it wasn’t enough. I didn’t feel like it was a warding enough to the people I was trying to help. So I wanted to get more information on how to use the skills to help people instead of just letting a person talk, talk to talk, and never getting to a solution. So I wanted to learn the skills and what to use and what to say, to help a person get to the bottom of the situation. Yeah, I don’t know if that makes sense.

Bill Gasiamis 17:07
It sounds like you’re doing your best to help people, you felt like perhaps you could help them but more and better, and you decided to get qualified in the particular field so that you could offer a better thinking about the people you are helping you want it to make sure that you can support them to get an outcome rather than just a tendon and, and perhaps not get to an endpoint.

Jennifer Hale 17:37
Right, exactly. That’s perfectly the endpoint. Because we can go around the same circle and never get to the bottom of it. And that’s, that’s not my goal. I wanted to make sure I was helping somebody.

Bill Gasiamis 17:51
So what happened at the time of the stroke, you experienced the symptoms, and you went to the hospital? Did they check you out? How long did you stay in hospital? And then how long were you in rehabilitation?

Jennifer Hale 18:11
I stayed in the hospital, I think, I want to say 10 days, if I remember straight, and I had a little bit of rehab there. They walked me around. And then I went to rehab. And I was in inpatient rehab for almost three months, two months after.

Jennifer Hale 18:40
Then I was on outpatient, until another month or two, and then insurance, no more. So, that didn’t stop me what I did was I would get on YouTube and look for exercises to help and I would exercise and then I went to the why and went the pool and worked on my legs and my arms and anything that will give me movement I get it.

Jennifer Hale 19:12
To this day. I don’t have insurance at this time because was between moving from one state to another and still trying to get my disability to get this. It’s kind of hard to get it off my neck. So the only thing I do now is just make sure I eat right, exercise, and do everything I can to keep my body in shape.

Post cerebrovascular accident deficits and improvements

Bill Gasiamis 19:41
They are good things to do. So you were in therapy until the insurance ran out. And then you went home when you went home. What did you go home with what kind of challenges were you experiencing?

Jennifer Hale 19:59
My left leg I would. So I had to tell my brain to pick up my leg when I was walking I named my left arm I named it baby. So baby was pinned to my side, she was not moving at all. And all the time she would move is when I yawn, and she would go straight up but then she’d come down.

Jennifer Hale 20:28
But after the rehab, I didn’t have any movement. My movement didn’t start until I joined the why starts when we’re not swimming, or moving in the pool. And then one day, my daughter was getting ready to go to work. Now I already knew I could lift my arm and I told her by and she was like, oh my God, it’s moving so it’s almost 90% now I just can’t move it on top of my head.

Jennifer Hale 21:01
My leg is strong. It doesn’t drag wherever now, I didn’t have to tell it. You know? Yeah, get going. And the only thing now, of course, is this one. I can’t pronounce it, you know, when you try to talk is a fish. phage. And now and then I lose track of thinking, you know, I can’t think too fast. Because everything just stops. Fifth, the outside appearance just coming along pretty well. But now it’s more inside.

Bill Gasiamis 21:46
The healing on the inside of the brain.

Jennifer Hale 21:49
The brain and my eyes.

Bill Gasiamis 21:53
How are your eyes affected?

Jennifer Hale 21:56
Blurry it’s like dusty. And they said the blood clot was small and wasn’t enough for them to operate was small. So okay. But when I was in the rehab, inpatient rehab, I watched everybody that was in there with me. And I thank God that it could have been worse. What is just amazing on what a stroke can do to a body. It’s just amazing. And you see the different effects of it?

Bill Gasiamis 22:42
Would you say you’re different? You say that? Your speech? If you think too quickly, everything stops. So is your speech affected by that as well? Are you talking at a slower pace than perhaps you would have before?

Jennifer Hale 22:58
Yes, yes, real slow. Sometimes I have to think about what I’m gonna say before I say else it just sounds like I’m reading.

Bill Gasiamis 23:11
So now the thinking has to happen. And then once you’ve gathered the thought, you can say it before you just used to talk. And he used to come out and there was no thinking about what you had to say.

Jennifer Hale 23:26
I had to think about what I was saying now.

Bill Gasiamis 23:31
Why do you believe that the therapy didn’t start for your left side and that you didn’t get much stronger while you were in rehab? And then you started to see improvements when you got home. Can you do you have a theory on that? Did you do something different when you came home?

Jennifer Hale 23:52
To be honest, I think the difference was once I moved to Alabama where I’m now they just completely health everything Spanish, and smoothies, and a lot of berries so the household is full of nothing but healthy snacks, and well healthy food period, and how you said turmeric.

Jennifer Hale 24:22
Turmeric,

Jennifer Hale 24:23
Turmeric. I think that that and walnuts did it. Does that that’s all I eat? All of a sudden seemed like everything just started. No relaxing. And then being in the swimming pool helped because my muscles weren’t filling in. So I can move and still have resistance and it wasn’t hurt.

Bill Gasiamis 24:58
I remember the swimming pool was really lovely to be in after the stroke, even though I couldn’t walk and move my left side either. Of course, I was supported by the therapists and with those flotation devices, so I was feeling safe being in there, but I was able to exert myself as much as possible and get that resistance from the water, and then also not be afraid that I was going to fall over and hurt myself.

Jennifer Hale 25:36
Right? Yeah, I think that was it. Because you can’t if you had three feet not going, you can’t go too far. It was good to have that resistance. That’s the part that I like, no, not moving around, and no nothing.

Bill Gasiamis 25:59
Was it difficult for the children to see you in the way that they saw you? How did they support you? And they all live in different places? And it sounds like you were living somewhere else at that time as well. Where were you living?

Jennifer Hale 26:16
I was living with my daughter in South Carolina. Well, let me back up because I know I saw, um, right before the pandemic 2019. I flew, and I stayed in California. But I flew to South Carolina to view my son and his birthday, and then everything shut down. So that’s what made me stay here. Because I couldn’t, I couldn’t go home. I said, Well, my kids and grandkids are here.

Jennifer Hale 26:49
So my eyes weren’t hanging around. So that’s how it truly happened. And then the daughter I was standing in South Carolina, I was living with her. And it was just a blessing because she worked the night shift. And she was asleep when I was going through the dizzy spells and on. And I tip I called her She didn’t ask her, and I texted her. And I said, Oh when I was just getting ready to take a nap.

Jennifer Hale 27:20
Don’t take a nap. Stay up. So I stayed up. My daughter ran up the stairs and she said, Mom, you do like you get ready to mirror looking at myself and she’s like, having a stroke. And I said, Oh, okay, and I was real calm. She said this go and I said, Okay, wait, let me let me call my hair. No, you don’t have time to comb your hair. You got to go. You don’t know who we’re gonna see when I get there. I gotta go. It’s my birthday. I gotta make sure I’m good. So she got me there. Thank you, Lord. Everything was okay.

Bill Gasiamis 28:06
And then your other two children were not near you. They get the news. How did they respond?

Jennifer Hale 28:13
They were at a hospital. My son at the time. He couldn’t make it. But he kept calling but my daughter. They came? Yeah, they were at the hospital. My sisters and fathers flew out from California. So I had a lot of support in the beginning.

Bill Gasiamis 28:35
You got one of those big families that when something goes wrong, everyone just turns up.

Jennifer Hale 28:42
At the rehab, they say you like a movie star around here? I said that’s my family they are shy about nothing.

Bill Gasiamis 28:58
It sounds like you’re the matriarch as well, it sounds like you’re the head of the family. And a lot of things happen. Because people look up to you and they respect you. And probably your attitude. It sounds like has always been your attitude. I don’t think that this is new for you this way, about solving problems and overcoming challenges. I don’t feel like you just started this has that always been you?

Jennifer Hale 29:23
It’s funny that you say that because I’m the oldest of eight and I’m okay, we’re so close in age that I never felt like I was the oldest because it was that close in age. I will always be there to support whatever they need or whatever they need from me. So and then yeah, they asked you a question.

Jennifer Hale 29:51
Negativity was never my thing. If you didn’t have anything positive to say as they used to say you can’t say anything nice. Don’t say anything at all. So yeah, it’s me, I believe there is too much in life to be disappointed about things. That’s not gonna matter.

Jennifer Hale 30:11
A minute from now, you know, if you can make the best of it, do it, you know if you can’t figure it out. But no, I never know, you know, I’m not gonna say I don’t have bad days, because I do. But I let it take sick, take its course with it, don’t settle it don’t settle in long enough for me to feel sorry for myself.

Communication and attention span are affected by cerebrovascular accident

Bill Gasiamis 30:39
That’s a very good example, of aphasia. Was it worse before this particular interview, has it improved, what have you noticed, has changed with the way that you communicate now?

Jennifer Hale 30:56
It improved a whole lot. Because in the beginning, all this was over here. And a friend of mine told me he said, chew gum, just chew gum, and you’re gonna find that to eventually your side is going to kind of even out. And I did I used to shoot like, stick sticks out the sticks.

Jennifer Hale 31:23
And I still chew it, you know, but he was right. Eventually, it came. And I had exercises that they gave me that I still do. I say my ABCs. And when I read a book, I read out loud. So I, you know, the more I use it, the better it gets. But sometimes, I don’t like to hear myself say to me, I sound like a robot. So after a while, I just get quiet because I don’t like that part. And then we’re all ready for exercise some more, but when it’s much better, that’s your question.

Bill Gasiamis 32:08
So you hear yourself in your ears like a robot? Did you ever hear like a robot? Did you ever notice yourself? Being aware that you can hear yourself before? Does that make sense? Do you know when you’re talking? I’ve never actually paid attention to, the sound of my voice sometimes people will say you love the sound of your voice if you’re the kind of person who talks a lot and is chatting all the time.

Bill Gasiamis 32:41
And I’ve always said Yeah, I do like to send them my invoice. But I haven’t paid attention to it. Are you saying that what happens now is the sound of your voice comes into your awareness? And then as a result of that is and it does that because it sounds strange.

Jennifer Hale 33:00
Sounds strange. It sounds just like a yeah, just sounds strange. I can’t even explain it. Like

Bill Gasiamis 33:12
Like an electronic voice.

Jennifer Hale 33:15
Just like that.

Bill Gasiamis 33:18
And do other people’s voices sound like that to you? Or is it just your voice that sounds like that?

Jennifer Hale 33:26
Just my voice, with other people. You only can talk for so long as I have. I can’t talk take a break. If I’m around somebody who talks talk talk. Yeah, to take a break. And I never that bothered me before. Because, you know, communication is the key. But now I’m very in tune with conversations. And if it’s a conversation that I feel like it’s not meaningful or it’s not adaptive if I could say that, in other words, I don’t want to just hear you talk. I you know, it gotta be some some information to what we’re talking about.

Bill Gasiamis 34:30
There has to be a point to the conversation, not just your chin wagging.

Jennifer Hale 34:36
Oh, that’s good. Yeah.

Bill Gasiamis 34:39
That’s an Australian saying.

Jennifer Hale 34:42
Oh, what is it said again?

Bill Gasiamis 34:44
Chin wagging.

Jennifer Hale 34:46
Chin wagging. I’m gonna borrow? No, I’m not gonna borrow it and I’m gonna say it if you don’t mind.

Bill Gasiamis 34:55
You own it. So what we do is we can say something Unlike let’s go for a chinwag, that means let’s go for a talk. Let’s go for a bit of a talk. Let’s get it. And then this goes over here. You could, you could say something like, you know, he’s just having a chinwag. He is just talking, and he’s just getting things out.

Bill Gasiamis 35:17
He’s just saying stuff. You know, it’s just it’s just to describe what people are doing is that more than anything, they’re just moving the chin rather than having a deep and meaningful or important conversation. It’s just, it’s just a term that suggests there’s talking going on, but there might not be a lot of substance behind it. But that’s,

Jennifer Hale 35:40
yeah, yes. Okay, for a little while. And then after, wow, my brain just shuts down automatically, because I’m not receiving nothing to keep, keep it productive, you know,

Bill Gasiamis 35:54
to keep you stimulated and focused and try to work out what’s going on. And then it becomes it sounds like then it becomes just noise. And then that becomes tiring because I understand how noise can make the brain tired. Especially if it’s just for no purpose.

Jennifer Hale 36:16
Right. And there’s no Hartfield is that’s one of the things that when I realized that about myself, I caught a family meeting remark by its children hearing that, um, no, look, I’m not the same, you know, I’m not, you know, it used to be timely to talk to two and three in the morning just, you know, chinwag but no, we can’t do that anymore.

Jennifer Hale 36:45
And you have to make sure what you talk about is important or something that’s going to be worth listening to because my attention span shuts down real quickly. And I don’t want you to think I’m being rude when I’m not, I just have to listen to my head and it says enough is enough. I check out.

Bill Gasiamis 37:09
And you’ve got to save that energy for the important conversations, so you can have those and pay attention to them. And some of the other conversations, just take some of that battery energy from that space.

Jennifer Hale 37:24
Right. Right. Right, is on reserve, I’m putting it on reserve. And I noticed if I don’t talk all day, by the end of England. I have a lot. You can wear me out for a minute. But if you start in the morning, I’m gonna last.

Bill Gasiamis 37:49
You say it’s so well, that’s so true. That’s exactly what I experienced. I was never able to communicate it. I would just say, Look, I’m not interested in talking and people might take it the wrong way. Or, or, or just sound like I’m getting overwhelmed or I don’t want to hear about it. Or just don’t tell me I don’t want to know. Sounds like you have a better way of letting people know.

Jennifer Hale 38:16
I’m not in the business of trying to hurt people’s feelings. I never was, you know, because if it’s something about you, I don’t care about I don’t set myself up for the nonsense. So I try to be front. This is how it is. I’m not trying to hurt your feelings, but I gotta look after what my body’s telling me to do.

Bill Gasiamis 38:46
Your grandmother so the kids are around from time to time. What is it like when they’re around? Because they’re full of energy and they want your attention and they want to play and they want to be loud. What’s that like?

Jennifer Hale 39:00
In the beginning, as I said, I named my arms baby. It took a while for them to comprehend what was going on because, to be honest, all my grandkids my oldest granddaughter she calls me Granny the one under her calls me Ma. And the three around here call me Grandma Peachy so they all have their little name for their personality and my personality.

Jennifer Hale 39:35
So they used to see grandma peachy, you know, she always doing something, you know, but when they saw I couldn’t I so and I used to make T-shirts, printed T-shirts and I will get them involved. Crafting was my thing. When they said I couldn’t do it. They were Oh No Grandma Peachy. They will be so and they will all come and rub my arm or relate it and who went to the store?

Jennifer Hale 40:09
They will take my hand all three of them will grab one grab a wrist one or grab the elbow one regret and they all walked me across the street. It was so attentive in the beginning when they sang Grandma Peachy Can Move a little bit Oh, it was over.

Jennifer Hale 40:30
Okay, you guys still gotta calm down not fully back but they do have to understand you know, when I’m in my room you know that’s my rest time and they knock on the door to make sure I’m okay then when I come out to I laugh and talk with them but when it’s enough they understand they don’t feel bad it just okay grandma peachy will see you whenever you come back out. They’re very understanding.

Bill Gasiamis 41:08
Children are very smart and they understand they get things a lot more quickly than some adults will ever. It’s amazing how children can respond and know where the boundaries are. Know when you need attention and know when it’s okay to leave you alone. That just really gets it.

Jennifer Hale 41:31
Right? They do get it they do. You know, and I didn’t want them to feel sorry for me. I wanted them to still know that. I’m still your grandmother. I’m gonna do all I can with the shirt that I have, but you can’t wear me out. They understand they give me my rest.

Bill Gasiamis 41:55
Why did you choose to name your hand or your arm Baby?

Jennifer Hale 41:58
You know what? I just say Oh, baby you’ll be okay. And I guess it was just the nurturing part that came out. No, it was just lying in the hospital bed. And after the nurses do what they do, put my arm on a pill. And I looked at it because I couldn’t it wouldn’t move. I think the Lord I have feelings though.

Jennifer Hale 42:30
It was some people who did have to fill in it still couldn’t move. I think the more I have feelings because at least I can feel the sensation, you know. And I will say babies all right, you won’t be okay babies. So I don’t know if that was just my way of telling my arm it was gonna be okay. Because the baby’s still going strong.

The power of positivity

Bill Gasiamis 42:57
Yeah, I do love that. It reminds me of a story when I was in therapy in rehabilitation, inpatient rehab, just after my brain surgery. And I was trying to get my left side to work in and there was a gentleman there who had a problem. I think it was on his left side. It doesn’t matter that one of his arms wasn’t working properly. And at the beginning, he was calling his arm a bastard

Bill Gasiamis 43:23
Wow, what a reaction. That was my reaction. I couldn’t believe it and I had a conversation with him about that. And the reason he was calling it a bastard was because it wouldn’t work. It wouldn’t do what he wanted it to do. And then I said to him if your arm did work, if it did what you wanted to do, what would you call it? And he said I would call him my friend. I said that’s interesting.

Jennifer Hale 43:58
So contingent if I’m saying it, right. If you work for me, I’m gonna call you my friend. If you don’t work for me, then you that other things.

Bill Gasiamis 44:19
So the thing was, it was conditional. It had to be doing something to be his friend. So what I said to him was, what if you just call it your friend now? Pretend it to your friend already? And see what happens. And you wouldn’t believe it. As soon as you change the word that he was using to describe his hand. His hand worked and moved and it did that task. It happened in the space of less than a second. He changed the word. He looked at his hand. Okay. A friend moved, and it moved the way that he wanted to.

Jennifer Hale 45:04
See, yeah, that negativity, I tell you, none of it, if it’s not positive I don’t want any part of it, and that showed him how powerful he is, you know, his mind and his arm. That was some good advice because I don’t know if I could have sat around and listened to him talking to his arm like that.

Bill Gasiamis 45:31
That was so interesting to hear. And then I had another friend who’s had a stroke. And she again, I think it was, it doesn’t matter which side one of her arms was not working the way that it was before the stroke. And the therapist that came to her house, called it the bad arm. Now let’s help your bad arm, and my friend said, don’t speak about my arm like that.

Bill Gasiamis 46:00
It’s not my bed, we’ll have to find another name for you to use, do not use the bed. And that particular therapist got a little bit annoyed and upset. But my friend wasn’t going to have it she was Clare Coffield, and she wasn’t going to have it, she wasn’t going to put up with it.

Bill Gasiamis 46:18
And she gave that therapist, a nice little lesson in how to speak about this sort of situation. And Clare already had a name for her. And it wasn’t I can’t remember what it was. But it wasn’t the bad arm it was in the positive it was named something in the positive.

Bill Gasiamis 46:45
So it is a very interesting thing for me to hear that you would instinctively which is lovely. It says a lot about you that you would instinctively name your arm Baby and then that’s an example of how we can get in our way for recovery without realizing it. Some people, don’t realize that the unconscious thoughts or the words that they have become used to using how they’re working against them.

Jennifer Hale 47:21
Right, right. Even in rehab, they were calling my arm. How’s Baby today? Oh, Baby’s fine. Oh, that’s good. Everybody knew to call my arm Baby. And it kind of lifted to know that Baby sounded so refreshing or sensitive or you know, just, you know, we’re going to take care of baby today. Thank you, you know, so yeah.

Jennifer Hale 47:52
And you know, and it’s just amazing, where, what I’ve noticed, since I’ve been going through this, how sometimes people are not sensitive to your situation, especially when you think they should be if you’re a therapist seem like you’d be more sensitive. But they get so I guess now to the fact that they just, oh, is this a job?

Jennifer Hale 48:22
And sometimes you have to remind them that I’m not just your job, you know, we’re here to be a team. But I’m not here, you know, I know you can pay to help me. Because without mentioning any facilities in Atlanta, in the beginning, it was kind of tough for me, because I did nursing for over 20-something years. That’s how I raised my children. So I’ve been in the medical field.

Jennifer Hale 48:57
So I’ve always respected people. I was a CNA. So as they say, I was hands-on, you know, hands-on, but I respect them I honor them you know, because that is so hard when you’re a different person than what you used to be in, you know, so when this happened to me, and some of the nurses would come in and just, oh, no, slow down. You’re not just gonna toss me around like that, you know?

Jennifer Hale 49:36
And then they’d be shocked because what I noticed was, they think because you had a stroke, you don’t have this. So they would just say what they wanted to say. And then when I said oh, no, I understand everything they will be shocked.

Jennifer Hale 49:52
No, so they insist. They won’t be sensitive anymore. They just want to Oh, she had a stroke. She’ll be all right. No, I’m not gonna be all right. I understand everything you tell me. Well, why don’t you just be nice across the board?

The hardest thing about the cerebrovascular accident

Bill Gasiamis 50:14
It’s a far better approach. I agree. What’s the hardest thing about stroke for you?

Jennifer Hale 50:28
The hardest thing is watching other people watch me. Like, if that makes sense. went before this happened, you know, I felt like I was part of the team, you know, you could walk into a store, nobody. But now I noticed people kind of lay the look and turn their hair or they, they’ll try to speed up in front of you. So they don’t have to look at you. And like I said, In the beginning, my whole site was over here, when I close my mouth, in the halfway decent.

Jennifer Hale 51:09
But when I open it, people jump because they don’t expect to see the slurred. So when I noticed that kind of stuff, I just kind of chuckled to myself. So for me, I respect the fact that I am a new me. And eventually, I’ll be back which is going to take time. But for others, it hurts my feelings to watch you watch me. Because you should. I’m still a person.

Jennifer Hale 51:41
You know, I’m still part of this community. Nothing has changed, you know, you seldom see people say, How are you doing? Do you feel it? Okay. They turn to here like they don’t, they don’t see you come in. So it’s almost like they want to exclude you away from you. But I still make them known. I’m still here. Hi, how are you?

Bill Gasiamis 52:12
People don’t know. The hardest part. Yeah, people don’t know how to be around unwell people. They don’t. They don’t know what to say. They don’t know if they’re afraid they’ll say the wrong thing. Or it scares them to see somebody that’s a similar age to them. That’s unwell. Because oh my gosh, that could be me.

Bill Gasiamis 52:34
I’d rather not think about it. There are a lot of things that go on in the mind of somebody who’s, we’ll call them normal. Not that. Not that that means anything, but we’ll just call them not somebody who hasn’t had a stroke, perhaps. It is very interesting. What is the thing that stroke has taught you?

Jennifer Hale 52:59
To be patient with me? To be patient. There’s no sense of rushing anything anymore. Even when I come back to 110% I’m gonna still be patient with myself. Because I watch once again, everybody hustling bustling moving fast going, like what? Why am I moving so fast? You know, work? patience with myself? Yeah.

Bill Gasiamis 53:32
Were you not so patient with yourself? Previously?

Jennifer Hale 53:39
No, I don’t think I’m the one that will put myself on the back burner. And that everybody else. So now I’m learning that I have to put myself on the front burner.

Bill Gasiamis 53:55
That’s a good lesson to learn because some people give, give, give, give nothing left. And then that’s not good for anybody because then you get burnt out, or you can’t give and be You can’t give to yourself and feel good about yourself. And there’s no point burning out and making it about other people. It has to be at some point about you. And now especially, it has to be about you first.

Bill Gasiamis 54:27
Because if it’s about you, and you get better, and you heal, and you get back to being the type of person in the family that can handle the noise they can handle the events that can if you can get back to that then you’re a you know, your job role in the family. Improves, so to speak, we’ll call it improves. I don’t know what the word is but you go back to to your role, and that benefits, everybody.

Bill Gasiamis 55:04
Whereas if you don’t go back to your role, because you haven’t been able to make it about you and focus on yourself for the first time in your life, then that’s not good. That’s not good and shows you why you might get back into your family a little different than you were, you might speak slower. Or you might still walk at 95% instead of 100. But still, it’s better to have you back with these little deficits than to have you wiped out and on the sidelines and always right, not around.

Jennifer Hale 55:42
Right, right. Yeah, that’s true. Yeah. I’ve learned a lot through this journey.

Bill Gasiamis 55:52
What would you say to somebody listening to this, who’s just started their journey as well? Well, maybe they’re a few years in. What advice would you give?

A message to other cerebrovascular accident survivors

Jennifer Hale 56:01
Don’t give up on yourself. Don’t give up. Every time you wake up is another day to make a better way. I try to learn something different every day. Give yourself a goal, I might not be able to get this cup up today. But tomorrow, if I could just wrap my fingers around it. Just make a goal for yourself and work at it because it happened. The baby was picked to my left leg. I couldn’t do anything with Baby. Now baby can wave at you. So give yourself time and hope that it happens. Don’t give up on yourself.

Bill Gasiamis 56:58
Beautiful words. I appreciate you reaching out and joining me on the podcast. Thank you so much.

Jennifer Hale 57:06
Thank you for reaching out to me. As I said, this is my birthday kickoff celebration. I’m glad I did it with you first.

Bill Gasiamis 57:15
Happy birthday for five days this interview will go out in a bit longer than five days. But it’ll be your birthday celebration interview.

Jennifer Hale 57:31
Yes, yes. Thank you so much, Bill. Thank you.

Bill Gasiamis 57:39
Well, thank you for joining us on today’s episode. I hope you enjoyed my chinwag with Jennifer. To get a copy of my book just go to recoveryafterstroke.com. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.

Bill Gasiamis 58:01
A big big thank you goes to all those people who have already left a review for the show on Spotify or iTunes. It means the world to me, that podcasts live and thrive because of reviews. When you leave a review, you’re helping others in need of this type of content to find it a little bit easier to write your review and to leave a few words about what the show means to you.

Bill Gasiamis 58:25
Just do that by going to your Spotify or iTunes app and leaving a few comments and a five-star review. And just tell people who might be reading what you feel you got out of the show what it did for you and how it helped you. If you’re watching on YouTube, please do comment below the video I love responding to people’s comments on my videos.

Bill Gasiamis 58:48
If you are a stroke survivor with a story to share about your stroke experience come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify as a stroke survivor who wants to share your story in the hope that it will help somebody else who’s going through something similar. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover there is also a path for you to join me on the show for a sponsored episode, or for ongoing sponsorship.

Bill Gasiamis 59:21
Just go to recoveryafterstroke.com/contact, and fill out the form explaining briefly which category you belong to. And I will respond with more details about how we can connect via Zoom. Thank you once again for being here. Listening, interacting, commenting, and giving me your feedback. I do deeply appreciate you. See you in the next episode.

Intro 59:43
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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.

Intro 1:00:00
All content on this website at any length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.

Intro 1:00:17
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 1:00:38
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 000 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 1:01:04
While we aim to provide current quality information and 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Cerebrovascular Accident (CVA) Recovery – Jennifer Hale appeared first on Recovery After Stroke.

Andrew Stopps flew from New Zealand to the United States to receive stroke deficit-reducing injections that improved his deficits

Episode 241: Brain Tumor, Stroke, and Hearing Loss – Andrew Stopps
Young Stroke Survivor Podcast Website
Young Stroke Survivor Podcast Spotify
From New Zealand to INR for PSE treatment by Dr. Tobinick, improvement in sensation & hand function
Instagram

Highlights:

00:00 Introduction
03:50 The first deficits and information about Etanercept
07:52 Off-label use of Etanercept for stroke recovery
16:51 Preparation for Etanercept treatment
26:58 Etanercept helps reduce inflammation
34:34 Cognitive function testing and treatment for stroke
41:04 The initial improvements after the treatment
48:41 The number of shots required for treatment
54:14 Getting back to work after the treatment
1:01:26 Relearning how to play musical instruments
1:08:40 The follow-up treatment

Transcript:

Introduction – Etanercept for Stroke Recovery

Bill Gasiamis 0:00
Hello, everybody, this is episode 297 my guest today visited the Institute of Neurological Recovery in Boca Raton, Florida, run by Dr. Edward Tobinick to receive two injections of Etanercept, also known as Enbrel. The interview is a step-by-step retelling of what happened from the moment Andrew learned about Etanercept, the first consultation, the mission to raise the money for the trip and the procedure, what his deficits were like before the procedure, what happened on the day of the procedure, and what it’s like receiving the injections with the medication.

Bill Gasiamis 0:43
You will hear him speak about his deficits immediately after the injection. What happened in the days after the procedure was completed, and what life is like now that he has returned home to New Zealand and resumed daily living? Andrew Stopps. Welcome back to the podcast.

Andrew Stopps 1:02
Thank you very much for having me back.

Bill Gasiamis 1:05
Thank you for requesting to be back. We last spoke at episode 241. That’s almost 60 episodes ago. So that was a long time ago. It’s more than a year ago. Time flies. The reason we spoke is that you reached out to share your stroke story just like many of the people who have been on the show.

Bill Gasiamis 1:30
And you had a stroke in November 2021. And you had no previous symptoms, no idea that perhaps a stroke is on the cards. And you were also somebody who was recovering from a brain tumor in the past many years before that. Yep. When we chatted during the interview, we spoke about your symptoms, we spoke about pseudobulbar affect, and how you had inappropriate laughing at various times, we spoke about your identity, and how that was impacted because you’re a musician.

Bill Gasiamis 2:09
And there were some things you couldn’t do after the stroke. And we spoke about a whole bunch of other things. And since then, you have decided to do some research on Etanercept. Which is a medication, for lack of a better word that helps stroke survivors get some improvement in their deficits and seems to be helping people get some quality of life back. You are in the United Kingdom.

Andrew Stopps 2:54
No, I’m in New Zealand.

Bill Gasiamis 2:56
Ah, you’re in New Zealand. I don’t know why I thought you were in the United Kingdom.

Andrew Stopps 3:01
I don’t know why.

Bill Gasiamis 3:03
And you’re in New Zealand. And you recently took a trip to the United States, where you went to Florida where I believe the clinic that treats people is there. You had an experience, and you have something to share about that experience. And my first question is, how long ago was it that you were at the clinic for the procedure?

Andrew Stopps 3:37
So I was there six weeks ago. So I had the shot on the second of February and that made a difference.

The first deficits and information about Etanercept for stroke

Bill Gasiamis 3:51
Before you went there. Just tell us what your deficits were.

Andrew Stopps 3:58
So, I had the fatigue, cognitive fatigue. I had sensory overload. Problems regulating my emotions. My tongue was not on the side of my face was numb. So my speech was a little slurred I guess. Also, my hand was useless.

Bill Gasiamis 4:30
What does that mean? How was it not operating? Well, wasn’t it doing?

Andrew Stopps 4:34
It was like moving through molasses. It was so hard to move. And yeah, and I had bad pain in my right calf.

Bill Gasiamis 4:53
Okay, just from tightness, tension, and spasticity?

Andrew Stopps 4:59
Spasticity, so it was like a constant cramp that would sometimes get worse and sometimes, you know, lessen, but it was always there. So it made walking just, it was very uncomfortable and it was worse at night.

Bill Gasiamis 5:17
As far as your lifestyle, music, work, you know, the ability to be you around the house and all those types of things. What weren’t you able to do? What were you not able to participate in?

Andrew Stopps 5:35
Pretty much everything. The fatigue and the sensory overload precluded me from a lot of things. I couldn’t predict when I’d be fatigued, I could have a really busy day, the day before and be fine. And I could do nothing and have fatigue and vice versa. So it was really hard to predict. There were so many places I couldn’t go.

Andrew Stopps 5:59
Or if I did go, I can only stay for, you know, for a limited amount of time, from a few minutes to maybe half an hour, and then have to leave. So my ability to work was nil. Because I mean, I yeah, I wasn’t, I couldn’t be reliable, because I didn’t know how it’s going to be from one day to the next. And being at home. Like even doing housework. I had to ration out my energy for the day. So yeah, it was hard. It was very hard.

Bill Gasiamis 6:37
And at some point, have you heard about Etanercept? Yep. What was that? Like? How did you hear about it? What were you thinking? How did it get you curious about it? Tell us a little bit about that. Oh, my God, I better look into this type of procedure or product or service or medication.

Andrew Stopps 7:02
Yep. So it would have been probably about nine months ago. So it’s about June last year, I was doing some research into other Strokes, stroke recovery methods, and possible things I could do to help my recovery. Because I was so frustrated with not being able to do anything.

Andrew Stopps 7:25
And I came across a YouTube video of a 60 Minutes Australia story that talked about this woman that went to America and she had all these deficits, and she had this shot. And suddenly she could speak properly and her arm move better. And there was Etanercept. And I knew then that that moment, I have to do this. I have to try this shot.

Off-label use of Etanercept for stroke recovery

Bill Gasiamis 7:52
Yeah, fair enough. So that 60 minutes. Video Interview. I’m pretty sure it was about 10 years ago, and it was done at the Institute of Neurological Recovery. And that’s in Florida. And the doctor’s name is Dr. Tobinick and the interview was pretty was pretty cool because you got to see patients go through the process.

Bill Gasiamis 8:31
And then you can see the before and the after the interview, I interviewed them. And now on the Institute of Neurological Recovery YouTube channel, there’s a whole bunch of those stories. Where patients have been, they have a discussion about their deficits and the challenges they showed having the procedure, and then they have some time to recuperate from the procedure, and then they are interviewed about the benefits and some of them have amazing results immediately after the procedure.

Bill Gasiamis 9:09
And it’s in Florida, and there are a few people who are a bit skeptical about things that happen in Florida, as far as medical procedures because their laws are a little bit more relaxed than in some other parts of the United States. And when you ask somebody on the internet, especially on my Instagram page, and when I asked some people about Etanercept ages ago, there was a little bit of hesitation. Some people said it’s okay. Some people thought that it was just a little bit of a scam, to put it bluntly. So tell me about your first approach to the two heme, what that was like how you started the conversation.

Andrew Stopps 10:06
Because I come from an academic, academic background. My first instinct, obviously, in the video was to look up any research, any medical papers, anything I could find. I found a band with a lot of papers by Tonique, which were good, but I didn’t want to necessarily take his word. So I found some independently researched papers, some independent studies done in Australia and New Zealand, and realized that, yeah, these people were getting the same results here and in Australia, as they were getting in Florida.

Andrew Stopps 10:49
So I sent an email to the Institute and put out a questionnaire in the medical form about my stroke. And then the next thing is they booked her an online consultation. And in the meantime, I had to have a whole series of blood tests done, I had to board my medical reports of my stroke. And yeah, and it went from there.

Bill Gasiamis 11:23
Okay, that’s pretty easy. So you’re in New Zealand, and you got a list of blood that they wanted you to get some blood work done on? You had that done? First, did you get the results you sent across? And then was there another discussion? After that? Was there some kind of discussion about the process or the procedure or what was next?

Andrew Stopps 11:45
Yeah, so that once they get all the information, they book a consultation, and then you have about 45 minutes to an hour with the doctor, and he and he talk about the procedure? And, like, answers all the questions and everything like that.

Bill Gasiamis 12:05
Okay, so there’s a lot of upside, what are the risks? Were there any risks that you were made aware of, that you found in the research that you needed to be aware of?

Andrew Stopps 12:16
Etanercept is a drug that’s used for arthritis. So it’s normally injected into joints. And what it does is it reduces inflammation. And makes makes life more bearable. People who are having it done for that reason have to go on a long course, of treatment of a tennis app for months. And if you tend to that long, it can make you susceptible to infections and particularly reactivate certain infections, if you’ve had them before. Like, I think Tuberculosis was one of them.

Bill Gasiamis 12:55
Reactivate it. Wow.

Andrew Stopps 12:59
Because for stroke, you only have a maximum of three shots, and they’re the first two are done a week apart. And there’s the third one done a month later. Because it’s, it’s so few shots, there’s no side effect. And it either works or it doesn’t. So you either have a result, or you don’t. So the fact that there were no known bad reactions to this drug and you know, you have to sign a, you know, a waiver saying, you know, you’re aware.

Andrew Stopps 13:44
But, I mean, I’ve signed those for everything. So, you know, every procedure overhead, it’s, you know, had potentially devastating side effects. So, be Yeah, the fact that I would either have, you know, have a good result or where I would have no result, you know, was good, I can live with that.

Bill Gasiamis 14:05
In the description. When you type Etanercept into Google, you get an answer. Etanercept is a medication used to manage and treat autoimmune conditions, such as psoriasis, rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis, and ankylosing spondylitis. Seems like they’re all degenerative diseases related to bones and bone structures. Yep. But it doesn’t say that it’s for use in stroke, okay, so that’s kind of I think, where the challenges lie.

Andrew Stopps 14:55
And that’s where some people get nervous. Because it is an off-label use for that medication. Tobinick is the only one that does the treatment. And like I said, there have been studies done here and in Australia, where people have had the same, you know, benefit from it. But they’re just really slow. Adding it to the list of stroke recovery, medications, or treatments.

Bill Gasiamis 15:31
So you’ve gone through the initial discussion, you’ve delivered your blood, they’ve looked at your blood, and they’ve said, you’re a candidate. What did they say? How did it go from there?

Andrew Stopps 15:43
So obviously, one of the blood is to see if you’ve ever been exposed to tuberculosis because they don’t want that to be reactivated. And my mind came out negative. So once they’ve got all the information, and they saw what kind of stroke I had, how long ago I had, and stuff like that, they then say, okay, yep, you’d be a great candidate for this. And they lock you in time for the initial shot. Okay. So I think I had my consultation in September last year, and the first available appointment was probably the second. So that’s my talk.

Bill Gasiamis 16:27
Okay. So then you have decided to go for it. Did you make the decision quickly? We, that’s Yeah,

Andrew Stopps 16:37
Yeah. Because I need to know, in my heart that have done everything possible. And if it didn’t work, then at least I know, but I had to know that I’d done everything possible to help my recovery. Cool.

Preparation for Etanercept for stroke treatment

Bill Gasiamis 16:53
You make a booking, you choose your flight, and you choose the accommodation. What is it like going on this trip? What are you thinking? How are you processing this whole time because it’s not a holiday, you’re not going to a beautiful, warm destination where you’re going to kick back and enjoy the sun, have a few Chardonnays or whatever, it’s a very different idea the traveling is for a specific purpose. Are you completely totally set in your mind that I’ve got to go get a result? I must get a result I have to get a result like what were you thinking?

Intro 17:29
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 17:53
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.

Intro 18:13
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

Andrew Stopps 18:33
I’m just going to back up a little bit. So the treatment itself was not cheap. It’s very expensive. And so I had to crowdfund for it because there’s no way I can afford this treatment when I’m not working.

Bill Gasiamis 18:51
Okay, can you tell? Can you tell me how much it cost? Yeah,

Andrew Stopps 18:54
sure. So the injections, the injection itself is $8,400. US The consultation is $1,000. And subsequent injections are $8,400. So when you and that’s us, when you factor in the exchange rate, and then the flights and everything else, it does mount up the cost of having this.

Bill Gasiamis 19:20
So three injections at $1,400?

Andrew Stopps 19:23
I never had three but yeah. So it mounts up.

Bill Gasiamis 19:33
So the procedure, just the procedure, the two injections, and the travel is somewhere in the vicinity of about 18,000 US dollars.

Andrew Stopps 19:48
And then you know, the exchange rates for New Zealand dollars in my case Australian dollars and yours and, and, you know, it the cost mounts.

Bill Gasiamis 19:58
Yeah. To AUD it’s 27,000 Australian dollars. Okay. It’s not something that everybody can manage to fund, for sure.

Andrew Stopps 20:11
And I had to crowdfund for that amount because I didn’t even have close.

Bill Gasiamis 20:19
I love the fact that you did that. So how does that? How does it feel to put that out there? In one of the chapters in my book, I talk about the things that people need to access to improve their recovery. And, I know that things to help people improve their stroke recovery are always expensive. One of the things I suggest is that they jump on to find a crowdfunding provider and run a crowd-funded campaign. What’s it like for you to go through that in your mind that you’re going to ask people for money to help you do this?

Andrew Stopps 20:56
My, initial reaction is to not want to do that. But I realized that this was important to me, I needed to do this. And this is the only way I could do it. So um, so yeah. So that’s why, why, and how I started. And literally, I started raising funds. I think, the same day, I had the consultation. So when I knew that I was a candidate. That one I knew that I had a date booked for that day, I, you know, set up the crowdfunding.

Bill Gasiamis 21:40
How long? Did it take you to raise the money? Or did you raise all the money?

Andrew Stopps 21:44
Yeah, so it took me five weeks. And initially, it was very slow. And in the end, some were very kind and donated. Like the bulk of the money in.

Bill Gasiamis 22:04
And do you know who that somebody was?

Andrew Stopps 22:06
Yeah.

Bill Gasiamis 22:07
Wow, that’s cool. ‘s an amazing gift, isn’t it?

Andrew Stopps 22:11
It was an incredible gift.

Bill Gasiamis 22:15
Now, I love the idea that you reached out, you overcame your inability to ask for help. And especially in this way, asking for money for a trip to do something like this. It seems very, it seems selfish, but it’s very selfless. To do that, I think it’s a very amazing thing that you did go out and seek help and ask for support in this way.

Bill Gasiamis 22:45
And what you’re doing is you’re not putting a gun to anybody’s head, you’re just saying, Hey, this is what I’m planning to do. If you can help out, help out. This is what the money is gonna go towards. And nobody’s obliged to do anything, if they want to they can.

Bill Gasiamis 23:00
And that’s what I love about it. Right, we need to overcome the barrier of how it feels to supposedly ask for help, everyone is entitled to be helped to have help. And everyone’s entitled to go after the best recovery they can go after. And in this day and age, with the fact that we can raise funds through these services, I think it’s so important that we utilize that service and ask for help.

Bill Gasiamis 23:30
And just even if you raise half the money, or a third of the money, or a 10th of the money, it doesn’t matter, as long as I as long as you’re being creative about that, and you’re being honest about what you’re going to do with the money. And then you’re being honest with the whole process. I think it’s really important that we encourage people to ask for help more.

Andrew Stopps 23:51
Yeah. That’s always been hard for me. Like I’ve always had, I’ve always found it hard to ask for any help, even with my stroke recovery. So yeah, that was a big, a big step for me, was doing that. But I just knew how important it was.

Bill Gasiamis 24:11
Brilliant so you’ve raised the money, that’s a huge thing that you’re excited or imagined. What are the what are the emotions, the feelings that you’re going through when that happens?

Andrew Stopps 24:23
I mean, I was elated when I had all the money and I could buy the ticket and I could, you know, pay for the treatment. That was like it just I was excited. But also with Etanercept the way that it works is it reduces inflammation in the brain. So when you have when you have a stroke, chronic inflammation, and it’s inflammation, that causes a lot of deficits.

Andrew Stopps 24:55
So, if you have the inflammation, Etanercept is gonna work, you know, fantastically for you. But sometimes you don’t have much and the deficits are caused by actual brain damage from the stroke. So and it’s hard to know, you know, whether it’s your deficits are caused, by the inflammation or by brain damage. So it’s it’s kind of a gamble. And I kind of felt going there, and I will and when I arrived there, I felt, wow, what’s going to happen if nothing happens?

Andrew Stopps 25:34
Like, I know, I was saying to everyone and myself, you know, um, you know, accept whatever happens happens. But I knew deep down, I’d be gutted. If nothing happened, and I’ve come, I’ve traveled all that way halfway around the world. And, and there’s no result.

Bill Gasiamis 25:54
You got your heart set on it. You’re thinking about all sorts of things related to what you will be able to do what you hope you’re going to be able to do how you hope it’s going to feel all the improvements you hope you hope to get. And then there’s that niggling thing in the back of your mind that goes, you might not get anything.

Andrew Stopps 26:12
Yeah. And then I would feel like a fraud. Because, you know, I’ve asked all these people for money for help, and nothing happens.

Bill Gasiamis 26:22
No result. Yeah. The people donating there. Are they aware that there’s a possibility of no result? Have you set that? Have you given that information to them so that they know that you’re going to go there and what happens if you come back with nothing?

Andrew Stopps 26:38
Yeah, I had written, and I’ve done some videos that sort of explained how Etanercept worked, and that there were no negative side effects. It either works, or it doesn’t. And I won’t know until I’ve tried it.

Etanercept helps reduce inflammation

Bill Gasiamis 26:57
You know, what you said was interesting that it helps decrease inflammation. One of my main goals during my stroke career was to reduce inflammation in my brain. And, and the reason was, is because I was on dexamethasone, which is a steroid, that helps to reduce inflammation.

Bill Gasiamis 27:16
And it’s also used by people who have arthritic conditions. And it does reduce the inflammation in the brain. And it helps recover the brain and heal the brain. But it has a whole bunch of side effects. You’re going to typical steroid side effects, anger, weight gain, inability to sleep, a whole bunch of things. And it was terrible to be on. And because it was so terrible, I just decided to Google, you know, back in 2012, I decided to Google, how to decrease inflammation in the brain.

Bill Gasiamis 27:52
And nutrition came up as a main ingredient, the main way to do that, right, so some foods, were going to make inflammation in the brain worse, and some foods were going to make inflammation in the brain better. And what I know now is that if I, for example, pasta, or bread, that they are, they tend to be inflammatory foods, for lack of a better word. And what they do is they kind of switch on the inflammation in my brain, and they make me more fatigued, more tired, they make my deficits worse.

Bill Gasiamis 28:24
And it’s kind of like this dance, if I can avoid having bread, or pasta, that particular sugar, for example, is another one. If I can avoid having those foods, I don’t notice my deficit so much. They’re still there. I still feel my arm the way that it feels in my leg the way that it feels. But, but it kind of allows me to settle things down. Which means that the deficit inflammation is temporary, right?

Bill Gasiamis 28:55
So in a minute, I want to talk about that. I want to talk about how a tenant said, well, let’s talk about it now. It decreases inflammation. But from my understanding, inflammation can be reactivated by me, for example, by doing the wrong thing and eating the wrong foods. What happens in this instance is designed to reduce inflammation. But then does it last?

Andrew Stopps 29:25
Yeah, it does.

Bill Gasiamis 29:26
Okay. Let’s leave it at that. It loves. All right. So the day of the flight comes? Yep. Who did you travel with?

Andrew Stopps 29:41
In New Zealand, to Houston, and then united to

Bill Gasiamis 29:45
Florida. On your own or with anyone else with you?

Andrew Stopps 29:50
Know, I work with my husband. I needed to have someone with me. I can’t navigate and I couldn’t ever get to airports alone. Um, I happen to have a whole sensory overload. So I had to have headphones to block out the sound, which is support. Filler Lorazepam on hand, just in case. It was yeah, it was a bit of a bit of a mission to get me there.

Bill Gasiamis 30:22
You arrived in Houston. And then you’ve got a connecting flight to Florida.

Andrew Stopps 30:28
Well, no, we didn’t actually because my husband is American. So we got we flew to Houston, and then flew on to Memphis and stay with his family for a week. So we got the week before the shot. And then we flew down to Florida. The day before the shot. I had the injection in the morning, and then we flew straight back to Memphis that afternoon. And I spent another week with his family. So it was nice that way. It was it was yeah, it was really good to see the you know, to see the family.

Bill Gasiamis 31:05
It was less rushed. Therefore, you guys have to pay for less accommodation. You got to see the family. Yeah, might combine all of that. That’s cool. So the day comes to jump the plane again, to go to Florida.

Andrew Stopps 31:26
Well, yeah, because I’m American airports are notoriously bad to navigate. And even worse when you’re dealing with all the deficits from stroke. So yeah, the fly down, though, was I was I was anxious. And then we were delayed and were supposed to get in at lunchtime on the day before, and we got in at 1 am or something. So it was just, it was yeah, it was a nightmare getting there. And I really, I thought is this, is this a sign? Like is the universe telling me not to do this? Because we just, you know, it was so hard.

Bill Gasiamis 32:09
I love it my favorite philosopher from back in the day, Marcus Aurelius had this line, which said the obstacle is the way so for me, it would have been a sign that that was the way to your particular goal there. Do the obstacles the challenges or the problems mean that you were on the right path?

Andrew Stopps 32:30
Yeah, it is yeah.

Bill Gasiamis 32:33
You’re right in Florida. And then what do you do to your accommodation? Do you go directly to the clinic? What happens then? Okay,

Andrew Stopps 32:41
When we got to Florida, it was night, and we went straight to the hotel. We got there at about 1 am. And then we had to get up at six the next morning to get out to the clinic because we were about a 40-minute drive. So we had an Uber out to the clinic the next morning. My appointment was at 8:30 in the morning, so yeah.

Bill Gasiamis 33:04
The appointment, you go to the appointment, you see the medical staff for the first time, what’s that? Like? What’s the welcoming procedure? Like?

Andrew Stopps 33:15
It was interesting. So the very first thing that happened was a COVID test. We got COVID tested, and then we went through, obviously both negative and we went through and I had about two hours of cognitive functions testing now, okay, I never had cognitive function tests here after the strike. I hadn’t had one since I had the brain tumor. So that in itself was fascinating, because I learned other deficits I had from these tests that that went were discovered, but you weren’t aware up. Like I had aphasia.

Bill Gasiamis 34:06
Okay. That’s interesting, definitely interesting because I know what that’s like because I had after the second blade in my brain, I had a lot of deficits, cognitive function deficits. For example,, the ones that I know, impacted me were, that sometimes I couldn’t remember to begin or start a sentence. Sometimes. I could remember who came to visit me. You know, my timeline was all messed up.

Cognitive function testing and treatment for stroke

Bill Gasiamis 34:34
I had no idea I couldn’t work. I couldn’t type an email. I couldn’t do any of that stuff. Like there was a whole bunch of problems. And I remember going to my psychologist and saying to her, that I had all these troubles and she said to me, has anyone done a neuropsych assessment? And I was like, No, what’s that?

Bill Gasiamis 34:51
She was the first person who introduced me to neuropsychologists and told me that I should go and see somebody and get assessed because they’ll give me a cognitive function test that was the first time I realized that maybe we need to look into this a little a little further, and they’ve mentioned it to me either. Yeah, turns out had some deficits in that space, and then they went away.

Andrew Stopps 35:13
It just boggles my mind that, you know, we have a, like a traumatic brain injury, and no one is testing the cognitive functions. I just, I kind of get my head around that, that there’s something that they don’t do. But anyway, they discovered I had anomic aphasia. So that meant that, for example, if I was told to name all the words, starting with S, I couldn’t.

Andrew Stopps 35:42
So you know, that was one of the one of the tests I had to do in a minute name, although words like this now could like, say, two words, and then I’d be going on. And that was it. Even my last name stops. I didn’t say, my husband’s name’s Sean. Like, I didn’t say, and he’s looking at me going. You know, and it’s, it was amazing. And like, I think there were three letters that I had to do that with, and all of them were the same.

Andrew Stopps 36:18
I just sat there going. I couldn’t think of any words, it was. Yeah, it was it was it was amazing. And, you know, that they test to see how much function my right hand had. And it was so actually good having those tests and, and getting, like a really clear idea of what my deficits were and how, you know, how bad they were.

Bill Gasiamis 36:50
It’s obviously to gauge where you’re at, get a baseline, yes, that they can then determine the impact of the intervention of the medical procedure, right on the shot. Yep. So it’s that’s taken about two and a half hours. Are you hardly exhausted by then?

Andrew Stopps 37:10
Oh, my God, I’m, I’m so fatigued at the end of that time. I mean, I was trying not to cry. Because I was so exhausted. I just wanted to sleep. But then, of course, I was ushered through to the treatment room. I think we had like 10 or 15 minutes, where I was just sitting, waiting. And then the next thing I was throwing the treatment room, and there were other patients there as well, having, you know, second or third treatments done.

Bill Gasiamis 37:46
Okay, did you get to meet any of those patients? Did you speak to anybody in the waiting room or anything like that?

Andrew Stopps 37:52
Oh, no, because we all had like, separate rooms that we were in? Yeah.

Bill Gasiamis 37:57
Okay. So then you’re being taken into the treatment room. Tell me about that procedure. How does that go? The extra treatment? Yeah, the process before you receive the injection during the time, you’ve done the testing, you know, where your baseline is?

Andrew Stopps 38:17
So after that, I didn’t meet Dr. Tobinick. I’d spoken to him online but I never met him. I was with his medical staff beforehand having all the tests done. And then he reviewed my results and then he came in and we talked about it you know, my deficits and and maybe the fact that I’m a musician and what I’d hoped to get out of the treatment, and yeah, okay, all right. And then he told me like well, this is what to expect you know, the feeling you when you get the injection and where he does it and how they rotate me head down on the table.

Bill Gasiamis 39:09
What does it feel like when you get the injection is this some kind of a sensation that you notice?

Andrew Stopps 39:14
There is so he said that when you get the injection they do it in the back of your neck between the vertebrae. So it goes into your spinal fluid. He said that some people feel the warmth from the medication going in the bitter thing and the metallic taste. It felt to me it felt hot. When it went in it stayed crazy like a beasting and I definitely got a metallic taste but as soon as he stopped putting the fluid in then that sensation stopped but it was uncomfortable.

Bill Gasiamis 39:54
Okay, for sure. So the penetrating your spine through tool The vertebrae accessing the cerebrospinal fluid through the spinal cord. Yep. And they put an injection in, you have the feeling and, when they’re putting the injection in your face down on a face down where I know.

Andrew Stopps 40:19
So what I’m doing at the time is I’m just leaning forward, and sorry, exposing the back of my neck. And then once he’s put the injection, and the needle itself is so tiny, like, I didn’t feel the need to go in, it’s just the medication. Then you lie back, and then they rotate the chair. So it’s flat. And then so it’s it goes. So it’s head down your legs above your head height. Yeah, yeah. Yeah. And your legs are strapped down, so they don’t slide off.

Bill Gasiamis 40:49
Yeah. And from my understanding, maybe I’m wrong. The reason that they do that is because they want the medication to go through the blood-brain barrier and enter.

Andrew Stopps 41:01
That’s correct.

The initial improvements after the Etanercept for stroke treatment

Bill Gasiamis 41:04
So from the injection. After the injection, immediately, you’re tipped backward so that your legs are above your head. How long have you been in that position? About three minutes? Okay. And in that time, are you noticing anything happening?

Andrew Stopps 41:25
Definitely. So the first thing I noticed, when I was laying there was that my fatigue just dialed down. It was like some, some was taking a switch and going fatigued on 10 9 8 7 6 5. And, like, within three minutes, all my fatigue had gone. And my need to cry had gone, it was gone. So that was the first thing I noticed. And then they brought him back up, right, and set me back up. And then I started noticing other things.

Bill Gasiamis 42:01
What other things did you notice first?

Andrew Stopps 42:05
So the pain in my leg was the same, it was like someone taking this dial and dialing it down until it was gone. And this is one of the first five minutes you could hear my speech getting better and better. And I can start to feel my tongue in my mouth. And that sensation was so weird because I didn’t realize that I had no feeling in the tip of my tongue. And suddenly it comes back.

Andrew Stopps 42:38
And I had this bright big tongue in my mouth. And it was so so off-putting. And even today, six months later, I had developed bad habits with my speech to compensate for the fact that my tongue was numb. And so I’m trying to undo those habits now.

Andrew Stopps 43:02
But yeah, that was what happened. And then they gave me a glass of orange juice for the metallic taste. And I took a drink of it. And the taste was just unbelievable. Like, I didn’t realize how my tastes had been affected as well. I had lost some of my taste. And it just was like, This taste was so bright. That’s the only way I can describe it.

Bill Gasiamis 43:29
Okay. Yeah. That makes sense. Oranges. Sweet, bright. Okay, I get it. Yeah. So you’ve, you’ve noticed your tongue is back on board. Fatigue is dialed down, that pain in your leg is dialed down. What else have you noticed?

Andrew Stopps 43:48
And then they asked me how my head was. And so I started moving my hand and like, it doesn’t feel like molasses anymore. I can move it freely, is just really weak. And as silly as it’s getting stronger. But yeah, I’m having, to learn how to move again. But at the time, all of a sudden, my head was just not hard to move. Yeah. So I noticed all those things happen within the first five minutes. Was it just amazing?

Bill Gasiamis 44:26
And then are you on your feet? At all, when you get on your feet? How soon are you on your feet?

Andrew Stopps 44:32
So probably. So after I’d had the shot and I was back upright again, they put the camera on, and he talked me about what I was doing and what I was wasting. Then they do some of the contract tests again like the the Aphasia test, and suddenly I can name all these words starting with s and t and other letters. Um, and had jumped from like to, you know, in a minute to nearly Well, 30 words in a minute. It was it was just so quick. Yeah, it was it was so fast how it happened, how I got things back.

Bill Gasiamis 45:22
What’s the husband saying? I’d be an emotional wreck. I’d probably cry my eyes out if I were you by then. And I’d have everyone in the room, you know, off the deep end with me as well. Yeah, as a coping.

Andrew Stopps 45:36
It was it was a bit like that. Yes, it was. Yeah, especially when my hand can start to move. And we realize that now, me being able to play my instruments again was possible. That, yeah, that was when things got emotional. Yeah, because having lost that ability for two years, was in a way heartbreaking. And subtly. You know, seeing seeing the light in the tunnel was amazing.

Bill Gasiamis 46:19
What instruments were you a fan of before you had the stroke?

Andrew Stopps 46:27
Clarinet saxophone and flute.

Bill Gasiamis 46:30
Okay. So very, I hate to say it this way. But they’re very handsy kind of instruments, right? All the dexterity needs coordination of all the fingers. It’s a big job, right? So you realize that you’re probably going to be able to somehow play it again? Is that what you realized?

Andrew Stopps 46:51
Yeah, yeah. Because suddenly, I can move my fingers like independently, which, you know, I mean, I can move my hand, you know, a bit before the stroke a bit, sorry, a bit before the shot, but my fingers have moved like two at a time or, you know, be pulled by other fingers. That might mean Oh, my index finger was hardly moving at all. So suddenly, you know, having all of my fingers back was amazing.

Bill Gasiamis 47:20
So before, they didn’t have individual control, so to speak, they had moved, or didn’t move together, they kind of had were impacted by each other rather than separate from each other.

Andrew Stopps 47:35
Yeah and also, my thumb wasn’t rotating properly. So I had no pinch at all. And I need that, that thumb to be rotated to better put it behind the clarinet. And now it’s rotating.

Bill Gasiamis 47:50
So then you’re five minutes in, all these things have come back. All those things have recovered, dialed down. You’re aware that some things are going to be possible that weren’t possible before? And then what happens after the first five minutes? What’s the procedure like?

Andrew Stopps 48:13
I think that’s when they gave me the tests on some of the tests again, where I was, you know, scoring sort of low on the tests and to see, you know, how much improvement there was. And then, once they, once they, you know, had done those and seen how much improvement there was. I get that is your sort of central New a really, that’s, that’s the end of it.

The number of shots required for Etanercept for stroke treatment

Bill Gasiamis 48:41
Okay, so why do some people need more than one shot?

Andrew Stopps 48:48
It depends on how severe the deficits are. So, if it works, if the first shot works and the deficits are severe, then the second shot is going to help improve those. And then if they’re severe, a third shot like a month later, will, you know, take it to the next level again. All

Bill Gasiamis 49:10
in all, how many shots did you have to do? Okay, how long after the first show didn’t have the second shot? Awake? Okay, so,

Andrew Stopps 49:21
we did the same thing, but this time, when we flew back, we didn’t go back to Memphis, we went straight to Houston and then flew back to New Zealand. But there was no that I didn’t get as much reaction or improvement after the second shot. I think because the first shot didn’t say much.

Andrew Stopps 49:49
We did the same thing. Again. Some went down the night before. I had the shot, and then the afternoon flew, flew out. Okay. So I mean, I could Travel everything coming back after the first shot was just it was chalk and cheese. It was unbelievable.

Bill Gasiamis 50:08
Were headphones necessary? Were you having any sensory issues?

Andrew Stopps 50:12
Nothing. I didn’t have anything at all. It was incredible. So suddenly I met at a busy airport with loads of people and flights delayed normally I’d be, you know, doing everything I could to block my senses out. And I was just another annoyed customer because the flight was delayed. It was It was unbelievable. How, yeah, how quick and how much change there was in just a few hours. Getting there and leaving.

Bill Gasiamis 50:47
How long does the flight from the United States take to New Zealand?

Andrew Stopps 50:53
14 hours.

Bill Gasiamis 50:55
Okay. And what’s that trip? Like normally, when you were going there? What was it like to be on the plane for 14 hours?

Andrew Stopps 51:02
It was horrible. I had to keep getting up and moving around because parts of me wouldn’t cease up. I had no eyemask headphones to block out sound. It was just yeah, it was it was just I took some sleeping tablets and translated for most of the trip. Because it was just Yeah, it was horrible. Coming back was It was great. was a really enjoyable flight.

Bill Gasiamis 51:38
Enjoyable. You have changed 100% If a flight for 14 hours is enjoyable. Something is going on there. So what you’re telling me is you got back and then what happens you get back and tell me because then you’re navigating your house for the first time since the meditation.

Andrew Stopps 52:02
Yeah, that’s the thing. Like, I couldn’t wait to get back because I wanted to see how everything was going to feel. And coming home, it felt like I was just picking up after two years where I left off. And that’s been a good thing and a bad thing. Because I’ve been trying to do everything I could do exactly as before the stroke. And I can’t, because my right side is physically still really weak.

Andrew Stopps 52:42
Because it’s been so basically immobile for two years. And so I get physically tired, like exhausted, because I’m, you know, doing everything I was doing before the stroke. You know, I’ve gone back to work for the first time since the stroke. While and even though it’s I’m limiting myself to two to three days a week. You know, it’s it’s physically tiring.

Andrew Stopps 53:22
So, relief teaching. The first day I did that, when I got back here I was stressed about it. I didn’t know how it was gonna be I didn’t know if I was gonna get you know, live in the class. I didn’t know what was going to happen. And when it didn’t, it was it was great. But you know, when you’re looking after kids for five hours a day and you’re on your feet, that’s even tiring when you don’t have a stroke. And so, yeah, like last week, I did three days in a row. And by yesterday, I was just like I was so physically tired. I felt like I’d run a marathon.

Getting back to work after the treatment

Bill Gasiamis 54:14
I can relate to that. That’s pretty. That’s pretty normal for people who are getting back to work after a stroke because it’s a big adjustment. Yeah, under normal conditions, even if you haven’t had an intervention like you’ve had is a massive thing to get able to be used to dealing with all of the drama, all of the children standing up thinking talking,

Andrew Stopps 54:41
was standing up I didn’t even think about how difficult physically that was going to be because I hadn’t been standing up for more than 30 minutes. Like I wouldn’t stand up for long periods. Right before that shot, and suddenly I’m standing up for like, you know, 1234 hours and wondering why my legs start feeling like jelly. You know, it’s just standing, you just standing Andrea, and why the hell can’t you do that? But, you know, if you haven’t been doing that for two years, it’s hard,

Bill Gasiamis 55:18
You got to retrain it, and that the deficit that you’re experiencing that weakness is something very common to a lot of stroke survivors, you know, one side is weaker than the other side, it does come better. I know, my left side is a lot is a lot weaker than my right side, the recently I started the gym. And I feared that I wouldn’t be able to do free weights. So for example, when I was doing a dumbbell bench press, I thought that it was better to use a bar and one of those machines that are safer in my mind to do a bench press on.

Bill Gasiamis 55:18
So that when my left arm gets weak, I was concerned that I would drop the weight on my left arm when it took, and also thought that I wouldn’t be able to hold the bar level and in a balanced position. But it turns out that after a long time, and being gentle with the recovery, and starting on the machines that are supported, and then doing very lightweight, and just getting good at the movements, that that you’re bringing, I was bringing that left side up, back online, back online, just teaching a process, teaching at a process.

Bill Gasiamis 56:36
And then with the weight, the weight was the correct weight for my left side, to get to 10 repetitions, for example, three times, it’s a bit like from my right side. But it doesn’t matter. Because I’m not trying to lift the heaviest weight possible. I’m trying to rehabilitate my left side, while I’m working on the right side. So we, so that comes like the strength does come back in time and it just requires rehabilitation, that’s all.

Bill Gasiamis 57:10
And just put something like a car, if you haven’t started the car for two years, and it’s just been sitting in the driveway, it’s going to chug and it’s going to feel a little bit different as everything starts to get lubricated and warm up again. And I find that my left side works better on the second and third rep than it does on the first rep. The first rep is kind of reminding me what to do.

Bill Gasiamis 57:38
And then it starts getting better. And then with the second set, the left side seems to know, oh, yeah, we’ve done this, we know what to do. And then we’re good to go. And I get more confident with the second and third sets as well. So it’s interesting. So you’ll get there. But I imagine, you know, you have expectations.

Bill Gasiamis 58:01
Even though you’ve had the injection, even though you’ve noticed there are benefits, you still have expectations of yourself. And you want to get back to normal processes and normal life as quickly as possible. And now you’re just kind of finding where where the threshold is. And yeah, you step back a little bit to give yourself recovery and recuperation.

Andrew Stopps 58:25
So firstly, the drug keeps working for about six months. So you see improvement over six months. And you don’t have to have follow-up shots. Like I’m not gonna have to do these every year or every couple of years. Like that’s it. But I have found this kind of distance now that my mind is clear now that I don’t have, you know, cognitive fatigue, now that I don’t have sensory overload. I’m thinking that I can just go back exactly to where I was two years ago.

Andrew Stopps 59:06
But in reality, things are changing, almost daily, like with my with my speech. That’s changing as as you know, my tongues are learning where to how to articulate words. My arm and my hand are changing all the time. And so it’s just yeah, it. There’s there’s so much newness that I have to get used to. While things are settling, settling in, the only thing that I have left over from the stroke is the muscles on the right side of my face.

Andrew Stopps 59:51
Automatically break into a smile when I’m emotional when they’re happy or Oh, not too though, just creep up. Which is interesting. And that’s the only thing now that I have left. From, from the stroke. Everything else seems to be falling into place. Like, is it coming back online?

Bill Gasiamis 1:00:20
You seem comfortable moving. I think is it your left side right now when we’ve been talking for about an hour, and your right side doesn’t get a lot of use. Is that just because of habit?

Andrew Stopps 1:00:31
Yep, I’m, I am constantly reminding myself and Shawn’s reminded me as well to use my right hand and use my right side more. And, you know, like, when I’m in the kitchen, for example, I will constantly think, you know, I’ve got to use my right hand to pick up the cart or to pick up a plate or to grab the cutlery, you know, to get used to picking it up. But then in other situations, like here in front of the computer, I forget again, because I’m so used to just doing everything left-handed.

Bill Gasiamis 1:01:17
Have you been able to pick up the instruments? I imagine it’s beautifully performed as before.

Relearning how to play musical instruments

Andrew Stopps 1:01:26
No, but it’s incredible. When I pick up, especially the clarinet, because that was my first instrument, and put my fingers on it, my right hand, just go straight to where it says go, it just remembers. It knows exactly what it has to do. And I can, like, move it on the keys, like three or four times, and then my fingers get too fatigued and my hand starts to creep up. And then you know, I have to stop.

Andrew Stopps 1:01:53
But it’s yeah, it’s it just feels like holding the clarinet was like putting on an old comfortable jumper. It just feels so natural, and so good. But it wasn’t gonna say we got back to back home from the States the day before Valentine’s Day. And Sean said to me that day. This is the best Valentine’s Day President I’ve ever had, having my husband back. And I was kind of hurt when he said that. I said I didn’t realize those were gone. And he said, Yeah, yeah, you were a different person. And now you’re back. You’re back to who you were. And that was emotional.

Bill Gasiamis 1:02:44
It makes sense. Because the partners and family members are dealing with how they experience you after stroke as well. They are mourning their losses about you, your relationship, and how you went about life. And they’re probably also thinking, Oh, why couldn’t we just go back together? And everything was the same as it was before?

Bill Gasiamis 1:03:10
Because I know stroke survivors who have said that, you know, I’ve said that. And then my wife has said that in not so many words. She said, Man, wouldn’t it just be good not to have any of this shit to deal with? And it’s like, yeah, of course. But, you know, we have to deal with it now.

Andrew Stopps 1:03:28
But I also think it was mainly the fatigue and the sensory overload the emotional regulation, like all other things, we had to factor into everything that we did every decision we made. And suddenly, we’re back home. And like, we didn’t have to worry about that. We didn’t have to worry about Andrew having a meltdown.

Bill Gasiamis 1:03:50
We went through similar things, you know, we’d be away. I’ve saved on a holiday or what have you. And I’d say to Christine, count me out today, do what you whatever you need to do, go and say whatever you need to say, but I’m out. I’m going to just chill out in the hotel room by the pool or at a cafe. I don’t want to be involved in any of it because I can’t and you know, that’s not It’s not fun to be overseas and not be able to do something for example, right?

Bill Gasiamis 1:04:19
Some people go through that at home. I couldn’t go to particular parties and events and all the things that people invited us to go and do and see. You know, you have to you have to not go sometimes you have to Yeah, heal and recover and not make it worse.

Andrew Stopps 1:04:38
Well, it’s interesting because the day after we got back from the first shot to Sean’s family, we went to a family dinner was his his extended family. And there were 21 people in the house for this dinner, from babies right away theater your elderly and it was So noisy and there was so much happening. And if that didn’t happen two days before, I would have lost about three minutes in the house, because it was so much to do.

Andrew Stopps 1:05:10
And I was just loving it, I was enjoying it so much. meeting other people and chatting. And it was just so it was so remarkable how I could go from not being able to tolerate that to being able to load that in a matter of 24 hours. You know, and some people who are skeptical of this treatment, and I’ve said yes, it’s a placebo. But I don’t know, I can’t see how that could be a placebo. Because it’s so major, it’s such a big thing.

Bill Gasiamis 1:05:52
But it’s also got some really good results in helping people with arthritic conditions and decreasing inflammation in joints. So it’s not placebo-like it wouldn’t work on arthritis in that way, yeah. Yeah, this is what you can’t get rid of when arthritis has done damage to joints, cartilage, and all that kind of stuff. You can’t undo the damage, you can only it’s like a brain, right?

Bill Gasiamis 1:06:20
When we get a brain injury, the injury doesn’t go away, in where it’s injured. The inflammation around the area is another thing. But the same thing with a bright, a bone that’s injured when the bone has become injured, the injury, the scarring, or whatever you want to call it is still going to be there. The wear and tear. Yep, so what so what it does is it decreases the inflammation signals around that so we can reduce the pain that people are suffering, it doesn’t take away that damage.

Andrew Stopps 1:06:51
What to noticed when I was doing my research leading up to this, and going online and asking people in stroke groups, you know, if they’d had the treatment and about it, and there was a small group of people that were really against it, and really, like one person, in particular, was quite aggressively, you know, discouraging me.

Andrew Stopps 1:07:19
He said, I know, people pay this money and nothing happens. Well, you’re told that from the start, like, It either works or it doesn’t. And this is why. So if it doesn’t work, it’s not because it’s a scam, it’s because you have inflammation, you have brain damage.

Bill Gasiamis 1:07:39
People need to understand that the damage is the damage once it’s there, it’s there, you’re not getting it back. If that means that the damage has caused you not to be able to walk well, then that’s not going away intercept. Is it 10 has is not real? Damage. No, it’s so in other parts of the brain that have been inflamed and do not operate properly to operate better.

Andrew Stopps 1:08:06
Yeah, yeah. And so, you know, there’s, there are people now who I’m talking to online, who will ask me about the procedure and the process, and may try and make a decision whether they’re going to have it. And it is, like, for me, the decision was, like, regardless of what happens, I have to know, I’ve done everything. So I’m prepared to gamble and take that risk.

The Etanercept for stroke follow-up treatment

Bill Gasiamis 1:08:40
Is there any follow-up now with the clinic?

Andrew Stopps 1:08:44
Yeah, I’ve got some paperwork I have to fill out in a couple of weeks, just to see how, you know how I’m progressing. But other than that, if I feel like in a couple of years, I want to have the third shot. Or then I’ll you know, I’ll do it. I’ll just, you know, I’ll see how much the improvement makes.

Bill Gasiamis 1:09:11
This is still an option. It’s a possibility.

Andrew Stopps 1:09:13
Yeah, yep. But then again, you know, it just depends on how much progress I make now, over the next couple of months. I mean, I’ve made such a huge amount of progress and like I said, I’ve just got to be careful of not burning myself out because I am like, going back and doing things exactly as I was doing like it’s funny, the school I was at doing a relief.

Andrew Stopps 1:09:45
Like when I came back when I started up again, was the school I was at the day before my stroke. And so it was like nothing had happened for two years. I just went from that Friday, to this Monday. And it’s two years later, I’m doing the same thing again. It was it was it was bizarre.

Bill Gasiamis 1:10:09
Like a two-year gap of stuff.

Andrew Stopps 1:10:13
Yeah, it’s like, the last two years didn’t happen.

Bill Gasiamis 1:10:17
Yeah. I Imagine what that’s like. One of the biggest challenges with me, helping people get through stroke is often struggling with the, you know, what do we tell people about, you know, how do we bring information to people, you know, things that we talk about getting doctors to talk on the podcast, it’s almost impossible. People don’t want to, yes, that kind of stuff, which is strange that you can get people to talk about it.

Bill Gasiamis 1:10:47
But I understand all the medical implications of that. What I loved was when you reached out and said, Can we tell the story of what my experience was with a teleseminar? And I thought, that’s something that we’ll need to do, it’s going to make a big difference to a lot of people listening about whether they go or don’t go.

Bill Gasiamis 1:11:07
And whether they like you they want to know, yes or no, did it work, or didn’t work, and that they’re gonna go after recovery, I want to encourage people who are listening to go back and listen, a couple of times get comfortable with the process that Andrew had to go through.

Bill Gasiamis 1:11:28
Understanding the implications of going there, the potential results that you might or might not get the funding, the cost that’s associated with this, and how to go about raising those funds is really important. And, and that’s, that’s about it for me, like, I appreciate you reaching out and sharing this story, because it was a gap in the knowledge base that was there that people were asking me about, and I couldn’t deliver them a piece of content that had at least one person’s version of events. And then sort of dispelled some of those myths as well.

Andrew Stopps 1:12:10
Yeah. Because the only videos you can find are the ones that are done on their website. And so and so it’s, for me, it’s important to talk about this to people and to answer questions and to, you know, to be valuable to be a resource because, you know, I’m not sitting in the, in the treatment room now and having a video done. I’m like, just I’m talking to you. I’m telling you exactly what it was like for me. And I wish that was available to me when I was trying to make a decision.

Bill Gasiamis 1:12:43
Let me just say, not that we have to this is not a paid endorsement, we are not doing a plight or the clinic or anybody like that we are two stroke survivors or one who was curious enough to go ahead and get that procedure done. And one who’s curious, because I want to get information out to people and give them something to consider. And even thinking about it for myself.

Bill Gasiamis 1:13:11
That’s the other interesting part of this, you know, is that for me, it’s a really important conversation, because I need to consider the possibilities of how this might support me. That’s one thing I haven’t asked you is, is it a procedure that can be done? For anybody who’s had a neurological injury? Does it have to be a stroke survivor? Does it have to be ischemic stroke or hemorrhagic stroke? Do you know anything about that?

Andrew Stopps 1:13:38
Yes, the type of stroke, it doesn’t matter if there’s inflammation caused by it, and it’s going to help with other brain injuries. I think they do do other brain injuries if you’ve got inflammation. This drug’s going to help.

Bill Gasiamis 1:13:56
Yeah. Excellent, man. Congratulations. Thank you for coming on and sharing that I appreciate it. And I wish you a great recovery and continued success. Well done.

Andrew Stopps 1:14:10
Thank you very much. Thank you. It’s been really good talking to you.

Bill Gasiamis 1:14:13
Well, thanks for joining us on today’s episode. This was an episode that I’ve been wanting to do for a very long time. Many people have contacted me and asked if I knew anybody or had understood what it’s like to receive Etanercept. Now that you’ve listened to the interview, I encourage you to do your research, make up your mind, and understand fully what it is that you might need to go through to consider the possibility of requesting the procedure from Dr. Tobinick.

Bill Gasiamis 1:14:54
This is not a paid endorsement of the clinic. I do not suggest that anybody listens to any of this information on the podcast and takes my advice or Andrews’s advice. Please do your research and investigation and make your own decisions. And hopefully what this has done is just given you some things to consider. And some things to understand that you didn’t understand before.

Bill Gasiamis 1:15:23
So, for everybody, listening, if you liked this episode, please do hit the like button, share the episode, let other people know about it, and get the conversation started, because that’s what we need more of, we need to hear more about the solutions that are possible for stroke survivors. And this might make a difference to somebody else’s recovery. If they can find this interview.

Bill Gasiamis 1:15:50
And listen to it, it might improve their quality of life, it might allow them to get back to work, it may allow them to get through recovery a little bit better. Thanks to everybody who always tunes in, listens leaves comments, and reviews, the podcast lives and thrives because of the reviews that people leave, whether it’s on Spotify or iTunes. So if you’d like to leave a review, please do go ahead and leave a review and some words about what the show means to you.

Bill Gasiamis 1:16:23
The show is growing, I get feedback from people every single week about what the show means to them what it was like when they discovered the show, how it made a difference in their recovery, how they don’t feel alone, and how they feel understood and feel like they found the community. And that’s exactly what I was I was trying to achieve. So I hope you enjoyed this episode. And I look forward to seeing you on the next episode. And I am truly grateful and truly and deeply appreciate everybody who listens and interacts and contacts me and leaves comments. Thank you.

Intro 1:17:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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 in all content on this website at any linked blog, podcast, or video material control.

Intro 1:17:24
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, 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.

Intro 1:17:48
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. 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.

Intro 1:18:11
If you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.

Intro 1:18:27
We did 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Etanercept for Stroke Recovery – Andrew Stopps appeared first on Recovery After Stroke.

Comprehensive Guide to Brain Arteriovenous Malformation (AVM) Recovery and Outlook

Understanding Brain Arteriovenous Malformation (AVM)

Brain Arteriovenous Malformation (AVM) is a rare condition characterized by abnormal connections between arteries and veins within the brain, bypassing the normal capillary system. This condition poses unique challenges due to its location in a critical organ like the brain, leading to potential complications such as hemorrhage, seizures, and neurological deficits.

Initial Stages of Brain AVM Recovery

Post-Treatment Care for Brain AVM

Following treatment for brain AVM, meticulous post-treatment care becomes paramount. Patients must strictly adhere to medical recommendations, including prescribed medications, lifestyle modifications, and regular follow-up appointments to monitor recovery progress and address any emerging issues promptly.

Physical Rehabilitation for Brain AVM Patients

Physical therapy plays a crucial role in aiding brain AVM patients during recovery. Rehabilitation programs tailored to the specific needs of each patient focus on restoring mobility, coordination, and strength. These programs are designed to address any neurological deficits and improve overall functional abilities.

Factors Influencing Brain AVM Recovery

Location and Size of Brain AVM

The location and size of a brain AVM significantly influence recovery outcomes. AVMs situated in critical areas of the brain may present greater challenges and require specialized treatment approaches to mitigate risks and optimize recovery.

Treatment Modalities for Brain AVM

The choice of treatment modality for brain AVM, whether it’s surgical resection, embolization, or radiosurgery, plays a pivotal role in determining recovery prospects. Each treatment option carries its own set of risks and benefits, and the selection depends on factors such as the size, location, and characteristics of the brain AVM, as well as the patient’s overall health and preferences.

Long-Term Outlook and Prognosis for Brain AVM Patients

Risk of Recurrence in Brain AVM Recovery

Despite successful treatment, there remains a risk of recurrence in brain AVM cases. Regular monitoring through imaging studies is essential to detect any signs of recurrence early and intervene promptly to prevent potential complications.

Quality of Life After Brain AVM Recovery

The quality of life post-treatment for brain AVM patients varies depending on various factors, including the success of treatment, the extent of neurological deficits, and overall functional recovery. Many individuals can resume their normal activities with minimal limitations, while others may require ongoing support and rehabilitation to manage persistent symptoms and optimize their quality of life.

Importance of Psychological Support in Brain AVM Recovery

In addition to physical rehabilitation, psychological support services such as counseling and support groups play a vital role in brain AVM recovery. Coping with the emotional and psychological impact of living with a brain AVM and undergoing treatment requires comprehensive support to address anxiety, depression, and other mental health challenges.

Conclusion: Optimizing Brain AVM Recovery

In conclusion, optimizing recovery and outlook for individuals with brain Arteriovenous Malformation (AVM) necessitates a multidisciplinary approach that addresses the unique challenges posed by this condition. By prioritizing post-treatment care, physical rehabilitation, and psychological support, brain AVM patients can achieve optimal recovery outcomes and lead fulfilling lives post-diagnosis and treatment.

The Interview

Monica Azevedo was 29 when she experienced a brain hemorrhage because of an AVM that required gamma knife surgery to resolve.

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Highlights

00:37 Introduction
00:59 The Brain AVM and symptoms
08:53 Deficits after the brain AVM
11:49 Brain AVM recovery with aphasia and cognitive difficulties
17:28 The importance of emotional and mental recovery
26:44 Transforming life after a stroke
33:36 Being at the right place at the right time to have a stroke
44:44 Career growth, overcoming obstacles, and finding gratitude
51:15 Bill’s lessons and hindsight from the stroke
56:44 The hardest thing about stroke for Monica Azevedo
59:28 What Monica Azevedo learned from her stroke
1:06:28 The importance of having a proper diet

Transcript:

Bill Gasiamis 0:00
Hello, everybody. My book about stroke recovery tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery. Where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.

Bill Gasiamis 0:22
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more to find out more and to get your copy, go to recoveryafterstroke.com/book.

Introduction – Monica Azevedo

Bill Gasiamis 0:37
This is episode 296. My guest today is on the road to recovery after a brain AVM bled into her brain when she was age, just 29 Monica as Aveda. Welcome to the podcast.

Monica Azevedo 0:51
Thank you. Thanks for having

Bill Gasiamis 0:55
Tell me a little bit about what happened to you.

The Brain AVM and symptoms

Monica Azevedo 0:59
Yeah, so long story short, I had a stroke on February 2 of last year 2023. And it changed my life and I’m doing a lot better now. But I’m still recovering. So essentially I had a hemorrhage stroke, where I had a bleed in my brain. And we found out it was because of an AVM in the brain that ruptured. So yeah, I’m not sure how far back and how many details.

Bill Gasiamis 2:03
Let me guide you don’t worry about it. So you have an AVM you find out the first time when it bleeds. Looking back now did you have any symptoms? Any idea that maybe there was something not right, something a bit weird about your head? Did you get strange headaches before? Did you have any inkling whatsoever that something was a little bit off?

Monica Azevedo 2:28
Not at all, complete shock. And it’s funny because I’ve had a couple of concussions in high school. And that didn’t do anything or at least, you know, let me know that I had potentially this AVM in my brain. So I consider myself lucky because all the symptoms were fairly, you know, quick and I got help fairly quickly as well.

Monica Azevedo 3:07
So I was working a lot and I had just finished my shift, it was a Thursday. And I left work, I went to grab my car. And I went I pulled up in front of the office, my boss and I were unloading my car because we just had done it at a trade show for the company. And I said goodbye and hopped into my car.

Monica Azevedo 3:48
As soon as I pulled out and started driving I got this sudden, headache, very sharp pain at the very front of my head and I was like whoa, like kind of taken aback because this kind of came out of nowhere. And then within seconds, my vision becomes blurry.

Monica Azevedo 4:14
And I figured okay, this isn’t good. So I think to myself, pull over immediately. I put all my hazard lights on I put my car in park and funny enough I’m from Toronto, and there are billboards up around and I remember always reading this one that had the acronym FAST. I think it’s like if your face is drooping. A like your arms and S for speech and then time to call.

Monica Azevedo 4:57
So I instantly thought to myself can you raise your arms and I couldn’t even like, raise my arms more than halfway. So I knew something like I needed help. So the first thing I did was think I was going to call my boss because he’s probably the one person who can get to me the quickest.

Monica Azevedo 5:25
And figure out what’s going on, I call him. I said, Hey, I’m not feeling good please come get me. And then, you know, from here on now, this is what I’ve been told, because as soon as I called him, he said he was coming. I blacked out. And then I remember coming to again for a second and I see him in my vehicle calling I guess, 911. And then blackout again. And I don’t remember anything for two weeks.

Monica Azevedo 6:04
I was in the ICU, they found out that I had a bleed in the brain almost immediately. And yeah, I had a breathing tube. And I, apparently had thrown up all over myself when this first had happened. And yeah, it was I was rushed to the hospital. So I was I’m very, very grateful that he was there to jump in and call 911 for me. Because, again, the symptoms were so sudden and so powerful. And it happened so fast. I barely had time to react. Yeah.

Bill Gasiamis 7:03
You’re you’ve got sort of this two-week period of time where everything’s lost, I imagine you would have been in some kind of an induced coma that would have been trying to stabilize the bleed, trying to sort it out, etc. Did you have family notified Was anyone by your side during that time to remember who was there when you woke up?

Monica Azevedo 7:26
Yeah, so my boss said, his name is Jamie. And he called, I believe, my parents and one of my girlfriends. And it was the two numbers he had, I think, and I’m not sure maybe he called my partner but he called who he could. And so, one of my good friends, Tara, she was the first one to get to the hospital and see me and she thought, you know, okay, well, this is a little bit more serious than I thought.

Monica Azevedo 8:14
She told my parents like, no, like, you need to come to the hospital. So all my close girlfriends, my parents, my brother. You know, bless their hearts. I have a great support team, and they’re all there. And yeah, I guess it’s still not clear to me exactly what had happened. You know, during when I was in ICU.

Bill Gasiamis 8:47
Are they all living locally, and are they all near you?

Monica Azevedo 8:51
Yeah, they are.

Deficits after the brain AVM

Bill Gasiamis 8:53
And it’s been 12 months, the anniversary of this time has just passed, right? So in those 12 months, what did you have to overcome? What deficits Did you wake up with after the surgery? After the hospitalization?

Monica Azevedo 9:10
Yeah, so I had like, a tube out of my head. So we ended up putting a shunt in because, during my hospital stay, I was at the hospital for about three to half weeks in total. I moved into a rehab center which helped a lot but during my hospital stay I guess they were trying to drain or let my body drain the fluid out of my brain on its own, but I couldn’t and whenever they I guess tried to let me do it on my own.

Monica Azevedo 9:56
Like those were times I kind of recall some of them. And some of them I don’t. But like, I would talk crazy like I was not making sense. The stories I hear from my family and friends are pretty funny. Scary, but funny. Now that I look back at it.

Bill Gasiamis 10:22
Did you have problems walking or using any side of your body or anything like that?

Monica Azevedo 10:26
The right side of my body was quite numb, tingling, and hard to use, I had to walk and learn how to walk again, so I used one of those walkers. And I had like my shoulders up to my ears I was so frigid. It affected my left eye. So I have what you call a strabismus or lazy eye.

Monica Azevedo 10:53
And it’s also affected the pupil. So the brain is amazing. But at first, it was like I had a double vision I am I couldn’t see anything, everything was messy. And then I just kind of adapt because essentially, what the brain is trying to do is, is create like, there’s two images, and they’re trying to blend those images. So it’s just one.

Monica Azevedo 11:31
So, I can see a lot better. But I’ve had to adapt. I had to learn how to walk again, I had to kind of gain strength on my right side. So physiotherapy was a big help.

Stroke recovery with aphasia and cognitive difficulties

Bill Gasiamis 11:49
How are you functioning verbally? And how you’re thinking? My assumption is, I’ve never met you before. So I’m assuming that everything is the way it’s always been. But are you having any difficulty with developing thoughts, finishing sentences, or starting a conversation? Do you have any of those dramas, things that are different than the way that you used to communicate before?

Monica Azevedo 12:14
Um, in the beginning, it was fairly difficult. I was kind of lost for words. But I’ve improved quite a lot. I have little trouble with short-term memory. But you know, I’m trying to work on my vocabulary. Again, I’m trying to talk more, read more, and challenge myself. So, you know, I’ve seen a couple of speech therapists. And luckily, that hasn’t been the case for me. I haven’t had a deficit in that regard.

Bill Gasiamis 12:59
And how about your energy levels? What about the way that you feel throughout the day? How energetic you can be how many things you can get done? How was that? These days? A

Monica Azevedo 13:11
a lot, a lot better now, a lot better now. So something that I struggled I was a lot mentally. My mental health was I was in a dark place for sure. Physically, now I gained 40 pounds. And within six months, I had to shave my head. So because they shaved half of my head for the shunt and this drain there they put in I had a little bit of an identity crisis because I didn’t recognize who I was in the mirror. Like I’ve gained weight my eyes weird to me. I’m I’ve shaved my head. And I forgot the original question. I don’t know where I’m going with this.

Bill Gasiamis 14:16
It was about it was about like how else you’ve been impacted? And you’ve answered the question beautifully said so fine. Yes, I was gonna say about your mental health. So were you somebody that perhaps had mental health challenges in the past, for example, my major, A minor, you don’t have to talk about any of this stuff. If you’re not comfortable, major or minor in that. Did you have baby anxiety or anything like that? Or was this all-new, or onset after your brain injury after this traumatic injury?

Monica Azevedo 14:48
I’ve always dealt with things with anxiety. So that wasn’t, you know, new for me, but yeah, a lot of it was new to me, I guess I guess. Like I have never, you know, experienced depression the way that I did last year. When I think back, I get emotional sometimes. Because I think I’ve come so far, you know, I’m, I’m doing so well. Considering I had a stroke a year ago, and I’m damn proud of myself, but it was hard.

Intro 15:42
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things that, you’ve never had a stroke before, and you probably don’t know what questions to ask.

Intro 16:07
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. Download the guide. It’s free.

Monica Azevedo 16:45
It’s really hard. And I think mentally is where I had the biggest challenge because and you know, because physically I couldn’t do the things I wanted to do. And whatnot.

Bill Gasiamis 17:03
Physically is where the effort goes, people see that immediately. They see you can’t walk, and they put you into therapy and you’re supposed to improve or you’re walking. And I think it’s a really important part of recovery. And then if you can regain some of your movement that might support your mental health a little bit, your emotional health.

The importance of emotional and mental recovery

Bill Gasiamis 17:28
But then the Emotional Health and Mental Health still require a lot of time and effort as well, just like the physical recovery, but very rarely do as a medical professional, you should go into six months of counseling or six months of therapy, they don’t do that unless somebody is proactive, says that to you. And then you have the idea that maybe psychological counseling, or emotional counseling is something that you need to do.

Bill Gasiamis 17:58
But a lot of stroke survivors don’t go down that path. They don’t think about it. Because they also look at the physical side of it. And then they go, Well, if only I could walk or if only I could use my arm or and then they put all their energy and focus into that, which makes sense. It’s logical. But strokes are a three-pronged recovery, you can’t just recover the physical and not pay attention to the emotional and then not pay attention to the mental. Because your, your thinking gets clouded. I know for me, it got clouded.

Bill Gasiamis 18:30
I’m thinking thoughts I had never thought before. Which, on reflection, it all makes complete sense. It’s logical that somebody who was perfectly healthy for 37 years, and now seems not to be and doesn’t know what the future holds, is going to have new thoughts about life and new thoughts about the world and new thoughts about work and the family and what it means to be alive and all that stuff.

Bill Gasiamis 18:57
So it’s pretty standard and obvious that you might initially after the stroke, have depressive type of thoughts and feel a sense of doom and gloom and and then get depressed, right? It’s pretty logical because something bad has happened. The thing about it is to help you to help you get through that is to observe it and to try and understand why you’re thinking those thoughts.

Bill Gasiamis 19:24
And to come to terms with the fact that you’re thinking of them and that it’s okay that you’re thinking of them and under the circumstances is understandable that you might be thinking of them. And then it’s about how you tried and transform those thoughts and get a little bit of what is it. I would say a little bit of control back because I felt out of control when it happened to me.

Bill Gasiamis 19:48
Everybody else was in control of my life. The doctors. You know the bleed was in control of my life. I mean, maybe God was in control of it. I had no idea what was happening, I was just along for the ride. But then I start making some small decisions and take back a little bit of their control where I can. And it’s usually in areas like, like what I’m going to address like, what is it that I’m going to address?

Bill Gasiamis 20:14
Like, Ah, okay, I’m going to address my mental health, I’m gonna go see a counselor, I am going to address my emotional problem, where I’m crying all the time, and I don’t know why. And then it’s like, I have I had also put on weight. So okay, I’m going to address my weight issue. And we’re going to stop consuming sodas or stop consuming sugar, for example.

Bill Gasiamis 20:38
And then as you do that, even though other things are out of your control, what happens is you take a little bit of control, and then you start to feel better about the fact that you’re playing an active role in keeping yourself healthier and avoiding another incident. But of course, I know that with ABMS often, the situation doesn’t just resolve when you get sent home, the AVM is still there often if they haven’t operated immediately.

Bill Gasiamis 21:08
So for me, it was there for three years almost after the first bleed, and played three times in total. And then we had surgery. So the first year I was in the kind of feeling better mode, things are getting better, but there’s still this unresolved matter. What situation are you in with your AVM?

Monica Azevedo 21:32
Yeah, so I still have my AVM which kind of scares me a little bit because there’s always that risk factor. Right, that is a potential re-rupture. And so yeah, it’s inoperable because it’s located at the back of the brain, but like, the way they describe it’s almost in the center of the brain because it’s very deep inside would be difficult for them to operate.

Monica Azevedo 22:09
So we did the gamma knife radiation treatment that the students experienced. And that was done about nine months ago. I have my MRI, then of this month, finally, to see how she’s doing. I call it Felicia, because it’s like, you know, Bye, Felicia. Like, you’re not welcome here anymore. Like, please, go.

Bill Gasiamis 22:51
Humor is so important.

Monica Azevedo 22:54
Yeah. So try to keep things light, right? I’m hoping for good news.

Bill Gasiamis 23:03
Okay, so a friend of mine, who I went to school with, who I harassed for his entire life. I’ve known him for 44 years. He went to school with me, I did the best I could to keep him out of studying to keep him out of doing well, to get him to be an idiot like me as much as possible, you know. And he went to university and I didn’t because University wasn’t for me, I had learned everything by the time I was in year nine or something like that.

Bill Gasiamis 23:40
So he went to university and became a radiographer. And the type of guy who when you go to a hospital and get a scan of your head, he’s the type of guy that does those scans. So when I was unwell, he was at the hospital that I was going to, and he was the guy that was scanning my head, and he would see me at every appointment. And I’ve known this guy my entire life, we’ve kept in touch, like since school finished.

Bill Gasiamis 24:08
And we went through this together and he would speak to my wife and he would reassure us but for three years, you know, he was on the case for me. And then he was the person who introduced me to my neurosurgeon who eventually did the operation. And then he was there. When I was recovering. He was all over the place like he was just amazing to have around is awesome.

Bill Gasiamis 24:10
And then I think 12 months ago, roughly about 12 months ago, a similar time to you. His daughter had an AVM she’s 17 years old and bleeding in the brain. Really difficult spot to get to the draining of the fluid. I go and visit him. I’m in the ICU with him. She’s on ventilators the whole lot. And now she’s up and about and she has some left side deficits that are kind of still impacting her, but it was touch and go just like you.

Bill Gasiamis 25:06
And she had the gamma knife surgery as well, the procedure. And what I understood that the gamma knife does is that it kind of zaps that area where the AVM exists. And it alters the DNA of the AVM. And the whole purpose of it is once it alters that DNA, it kind of stops it from working properly, and it shrivels it up. And then Felicia is no more.

Bill Gasiamis 25:35
And that’s the time that they’re in now. They’re also in that waiting zone, they’re waiting for the next MRI to have a look and see what happens. Hopefully, the results are in their favor and then they move on and go to the next stage. But it’s a difficult time for everybody who’s had an AVM to go through that. And I appreciate what you’re going through.

Bill Gasiamis 26:00
It’s just so ridiculously crazy that I had to go through what I went through, my friend had to help me, and his daughter had to go through that. And now together we’re going through this. And we can empathize with people who have had a stroke bit from a brain injury, bit from an AVM break from a blood clot. It’s a lot of waiting around and being patient, I imagine that it’s not something that you had practiced too much before being this patient about something that you’re that sort of motivated to get the right outcome for how is that new experience to deal with?

Transforming life after a brain AVM

Bill Gasiamis 26:44
How do you stay calm and relaxed and chilled the way you are? Because you appear very level-headed. You know, you’ve contacted me to be on the show. You’re presenting yourself as calm and calculated. Are you? Is that a facade? Because people listening who are going through what we’ve been through will be curious, like, are you not human? How do you do that? How do you live with that?

Monica Azevedo 27:16
I am cool, calm, and collected. And I’m kind of an introvert. But I know how to turn it on if I have to. Yeah, I’ve just always kind of been like the quiet more reserved, and observe-the-situation type of gal and yeah, it’s training yourself to have more positive self-talk as well, right? It’s so easy for me and for I’m sure anybody to kind of look at themselves and easily say, Oh, I don’t like my hair today.

Monica Azevedo 27:29
Or oh, I don’t like this outfit on me or, whatever it is, right? But yet, it’s not easy for us to tell ourselves. I am. You know, I’m smart. I’m courageous. I’m creative. And the list goes on. Right. So I just tried to practice gratitude. I tried to give, say daily affirmations. So sometimes it’ll be different every week. And yeah, and I just kind of say to myself, I’ve also journaled too.

Monica Azevedo 28:49
I think that’s helped quite a bit with processing this, but um, patients patients. It’s something that I’ve had to learn. I think you know, I know like you’re the I think the title of your book is like it stroke was the best thing that’s ever happened to me something along those lines and it’s interesting to say that only now I can say that yeah, I think I can agree because it you know, I quit some really poor habits that weren’t serving me anymore.

Monica Azevedo 29:33
I have more confidence in myself now and I truly see how short life can ultimately be I want to enjoy it and I don’t want to be miserable. I want to be happy and not allow things to bother me as much as they once had before.

Bill Gasiamis 30:00
Yeah, I love that. See, that’s the thing about my book title. It’s unexpected, it caught me off guard by surprise, as if the worst thing that ever happened to me, could become the best thing that ever happened to me, let’s face it. Now, I know people will say that some things are way worse than stroke that they’ve had happened to them.

Bill Gasiamis 30:23
Therefore, stroke doesn’t even mention it. So it just depends on your life, and what your experiences have been so far, and all that type of thing. And it just depends on how well I considered myself pretty dumb before the stroke. And I say that in the most caring and loving possible way.

Bill Gasiamis 30:43
Because I was not wise to the world, I had a way of doing things that was, in my mind, the only way of doing things and it was so not aligned with my way of being it was just like somebody else’s rules, I was implementing somebody else’s strategies and, and things and I was getting a lot of pushback, and I didn’t like it.

Bill Gasiamis 31:08
And it was really difficult to be myself. And then I’ve had this stroke, and then it stops and pauses everything. And I’ve got to change everything because I’m a completely different version of myself. And I need new tools. So I go and seek them out. I find tools that serve me are not difficult to implement and are enjoyable to do.

Bill Gasiamis 31:31
And I get a lot back from them, like gratitude, and like public speaking and all that kind of stuff. And then I’m like, I never would have discovered this stuff, if it wasn’t for all this health scare that I experienced and all the challenges that I’m facing, and I have to overcome. So its growth has happened, it had to get to this dark place, it had to get to rock bottom.

Bill Gasiamis 32:00
But then, it was just growth because I knew that I didn’t want to get to rock bottom ever again. Which meant that I couldn’t go about life the way I was going about life before you just if I did, if I did, that would get me the wrong outcome. And I’m not particularly happy with that outcome.

Bill Gasiamis 32:19
And now that I’ve had a taste of this new version, even though I’m living with deficits, even though my left side has been in pain for about three or four days now, even though you know, it’s bugging me, and I’m noticing it more and my balance is off. I have a podcast, I’ve met all these people, and I’m doing a book launch in a few weeks. It’s like, how can it not be the best thing that happened to me?

Bill Gasiamis 32:47
And I expect people will not be at that stage yet. And I’m perfectly comfortable with that. What I’m doing is trying to say to you, like if strokes, the worst thing that happened to you? How can you despite that, transform it regardless of how bad your deficits are, regardless of how bad your vision is, your memories, or that kind of stuff, how can you transform it into something that enables you to experience a part of life you had never experienced before? That’s amazing. Like you nearly died. So pretend you’re already dead, like fuck it, like and just go for it and do something that the old you who was supposedly alive, never would have done.

Being at the right place at the right time to have a stroke

Monica Azevedo 33:36
Amen. Yeah. 100%. Because it’s kind of strange to say, to say that, you know, you almost didn’t make it because, to me, I’m thinking like, I’m here. What do you mean, and I didn’t make it, but it’s true if I hadn’t gotten the help right away, like, who knows what the outcome would have been if you know, I say I had a guardian angel watching me because everything almost fell in place.

Monica Azevedo 34:14
Almost too perfect to help my situation. It was like it was it was gonna happen regardless. But you know, like, again, my my, my symptoms happen quickly and continuously and I didn’t have a moment to react right? Where some people I know you know, started stirring in the morning and then they go throughout the whole day and they may be been having this mini-stroke throughout the day and they weren’t even aware of it and it caused so much damage.

Monica Azevedo 34:53
And again, depending on where the AVM is located on the brain, it affects different parts of your body. It’s just, that there’s so much depth to all of this and everyone’s experience is not like any other. You know, I tried to seek out, you know, anyone else who had their eye affected from stroke, or AVM or what have you and, and it’s I find it so difficult to find anyone else who had an issue with their eye specifically, you know, I’ve had people I could relate with the shunt and, and some parts of my experience.

Bill Gasiamis 35:40
Well, on my Instagram page, there are a ton of people who have had me make posts specifically about vision, and people have responded. So if you go there and you scroll through, and you see the posts that are about vision, you’ll see there are people there. And anyway, if you wanted me to I could ask, and I can let the people following on Instagram know that Monica wants to connect with some people who have had vision problems after a stroke. Would you guys be willing to connect? And let me tell you there’s gonna be a few.

Monica Azevedo 36:17
Yeah, yeah. I would love that. I would, I would love to, you know, connect with anyone else who? Yeah, cuz I feel like that’s kind of like the missing piece a little bit up. I just haven’t come across anyone who talked about their eye being affected.

Bill Gasiamis 36:41
I was just gonna say how much does it bug you that your eye is affected in that way? What does it stop you from doing? Or what does it do to you?

Monica Azevedo 36:56
Now it doesn’t stop me from doing anything. So that’s great. It’s been an adjustment. It caused a lot of headaches, balance issues, and almost not knowing where you are in space, almost. It’s just a weird experience. And confidence-wise, you know, just looking at my reflection in a mirror and not seeing my eyes, you know, being the way they used to be.

Monica Azevedo 37:34
And yeah, so I was supposed to have the eye surgery. strabismus surgery. So it’s been going to help kind of align my eyes again. So the physical part of it will be fixed. But the visit again because my pupil was affected. I don’t know if it’s gonna fix the vision aspect. But we’ll see I have it rescheduled for next month. So I have a lot of things coming up, right, like the MRI, and eye surgery. And we’ll see what the next steps are for me.

Bill Gasiamis 38:19
Do you need to go and grab some tissues? Do you need to get some water? You seem like you’re a little. bit runny? Yeah,

Monica Azevedo 38:32
I get emotional sily. So I I’ll tear up here and there.

Bill Gasiamis 38:39
Yeah. Understand I’ve been there. Most people listening have been there. So have you been to a neuroophthalmologist, or you’re going to just the regular eye doctor, a neuroophthalmologist usually deals with eye challenges related to neurological issues. Who have you been seeing for your eye? What kind of a?

Monica Azevedo 39:05
Yeah, so I was I saw a couple of ophthalmologists. This specific ophthalmologist focuses on strabismus. So a lot of these patients are typically children. But he said he’s had, you know, a couple of a few adults in his career and, and, and it was due to like a neural neurological issue. So, yeah, he’s confident that he can help me and because I made it very clear that you know, I don’t want to go into this surgery if you don’t think there’s going to be a significant difference or improvement.

Monica Azevedo 39:58
Because that like I think I’ve adapted to what it is now. And I’m not, you know, half-b, but I can deal with it. You know, like the headaches, the daily headaches are gone. I balance is great. I’m back to the gym. I’m, you know, I’m doing all the things that I love doing again. So if it’s not going to improve what I’m at right now, like I, this is the baseline. I’mbackwardg backwards. I’m going forward.

Bill Gasiamis 40:44
That makes sense. 12 months just passed. Is thamonthsst 12 months? Was it? Anniversary? Was it a celebration? Was it a time of reflection? Did you either evputsort of did it into your mind? How did you guys do that?

Monica Azevedo 41:04
Yeah, you know, the first anniversary was definitely on my mind, I did reflect. And it was very emotional. And my girlfriend, you know, had had us over for dinner. We had low dinner together and kind of celebrated, you know, recovery for the last year. And then yeah, it was, it was a special day. And I just want to kind of create new and better memories for that day, because, mind you before the stroke, February 2 never meant anything to me. Okay, now, like, well, kind of needs something, right? So you make your what it is right?

Bill Gasiamis 41:56
So weird that we do that. I mean, if a calendar didn’t exist, we wouldn’t have a clue that a year had passed Exactly. That it was that they were just so strange. You know, we’ve been, I think we’ve been trained to mark anniversaries for some reason. Like, whether it’s, you know, wedding or getting together anniversaries, or whether it’s birthday anniversaries, or whether it’s the anniversary of somebody passing or whatever.

Bill Gasiamis 42:25
And, you know, we’ve been trained to remember that, this day, 12 months ago, this thing happened. And like, we now have to remember it for some reason and do something about it. And I feel a bit weird about marking anniversaries, but in a positive way, like you’re trying to bring, like a positive spin on it and say.

Bill Gasiamis 42:50
Well, if I am going to mark the 12-month anniversary, I’m going to mark it and say, look how far I’ve come, or this is what I’ve learned, or this is how I’ve grown, or this is how I’m better or different or whatever rather than re-traumatizing myself with what happened on that day. And then, you know, it being something that I have to get over again and over common, I don’t know. I do wonder why it is that humans have to mark anniversaries.

Monica Azevedo 43:34
Yeah, it’s interesting. You know, because you can’t expect everyone to remember, you know, this day, this happened to me. And why do we do it?

Bill Gasiamis 43:51
And why 12 months and not 13 or 11?

Monica Azevedo 43:54
Yeah. Because, again, it’s the calendar year, right? The calendar years for 12 months? Yeah. I guess it’s something it’s something to, you know, you can have a great debate on because you know, why celebrate your birthday every year, right? It’s because you get older, right? But it’s something I think of positively. No, it’s a way to celebrate and create new memories. And if you want to celebrate the damn thing, go ahead, you know, and if you don’t, you know, it’s your choice at the end of the day.

Bill Gasiamis 44:30
Yeah, I love what your friend did. For you. That’s a really lovely thing to do to sort of bring you guys together and make you feel cared for and looked after and thought of.

Career growth, overcoming obstacles, and finding gratitude

Monica Azevedo 44:44
Yeah, I have very special friends. They’re very, very close and dear to my heart. I’ve known them forever, basically, and my partner and my pair of friends and my family, just everyone close to me, has been so supportive and so amazing. And I truly, you know, recognize that friends and family are so important. And I, I anytime that I have, you know, again, because I’m an introvert, I like some alone time, because that’s how I recharge my batteries. But otherwise, my free is being spent with my friends, and family, my career that I’m trying to build.

Bill Gasiamis 45:39
Yeah. Tell me about your career. What are you trying to build?

Monica Azevedo 45:47
I don’t know if I want to go into it in depth, but I’ve been working for this company. And they’ve been so supportive during this entire journey. Because, you know, when the show happened, I wasn’t working for a little bit there. But they, you know, they were like, Nope, we understand we see what’s going on, come back when you’re ready. And I came part-time a part-time basis, to kind of ease my way back into it.

Monica Azevedo 46:24
I did that in August, so six later. Anen I liworkedlowly work my full-time full time. And, it’s nice to, you know, to have a sense of routine back again, you know, and wake up before I would wake up for work and be like, Oh, I hate this, I was so miserable. But now like, Oh, I get to wake up and I get to go to work. And then I get to go to the gym after and do all these other things. And, you know, make the best of it. Some days are harder than others it changed my perspective on a lot of things.

Bill Gasiamis 47:15
You were like every other normal person who hates waking up in the morning and going to damn work.

Monica Azevedo 47:22
Yeah, you know? I mean, if you’re waking up miserable going to work, then maybe you need to change your career.

Bill Gasiamis 47:31
Yeah, for sure. That was me. I mean, going to work. miserable. As my boss, I was creating two my pain and suffering because I was like I said, I was quite thick and dumb about the way I went about things. And I remember whinging and moaning about how hard it was to be me and to run my business and to get the guys to do what I needed them to do.

Bill Gasiamis 47:56
And my customers needed me to be there all the time. And if they didn’t see me, they wouldn’t want to work with me. And it was all these bullshit stories that are created in my head about why I couldn’t grow my business and why I couldn’t do this. And I couldn’t do that. My office, I didn’t have one home, I was working from home.

Bill Gasiamis 48:17
And who would have known that you know, 12 years later, working from home is the thing?to do. Right? And I was just so, so oblivious to the fact that I was working from home, but it was working. I thought that I needed to work from some other location to make our work better or some ridiculous thing. And then and then I found myself working from my hospital bed.

Bill Gasiamis the 48:46
So first time the I was in the hospital for seals, I got a laptop, I got a photo of the laptop on the food tray broughtthey bring out. And I’m sending quotes, sending invoices, receiving emailing, email, emailing my clients, My guys are going to work. They’re doing the work the way that they need to do it. The clients are happy the clients are paying. Everyone steps up. It’s like, what just happened?

Bill Gasiamis 49:16
I went literally from one week before where everything was a problem. I was whinging to my wife about it. Everything was so hard. Because the business was prosperous and working well, and we were making money and I was busy. What I wasn’t doing was delegating putting new people on and taking some of the pressure off me. I was just taking it all on board.

Bill Gasiamis 49:39
And then here I am, literally a week later with a brain injury and I’m working from my hospital bed. It just blew all of my preconceived ideas and all of my thoughts about what success looks like. It just blew that blew it out of the water and it was the most obvious that would hit Me, harder than the stroke hit me the blood in the brain hit me when I was in the hospital, probably on day three or four with my laptop and working away, I just couldn’t believe it.

Bill Gasiamis 50:11
And that was what sort of started this whole turn for the better this growth, this opportunity to sort of see things differently, to reach out to new people to learn new skills, new ways of thinking, new ways of applying myself. It was just, it’s just crazy that, that that’s how I got there, right. So my career became something that I got to do. And I’ve got to be at work, and I got to meet new clients, and I got to find new ways to solve problems. And then gratitude kicks in and it’s like, wow, look at me, like, this is so cool. And I can relate to what you’re saying a lot.

Monica Azevedo 50:51
Yeah, 100%. And, you know, it seems like you’re doing great, you know, after having, AVM ruptured three times and then have to go through surgery. And I couldn’t imagine what that is like, you know, once is enough.

Bill’s lessons and hindsight from the stroke

Bill Gasiamis 51:14
It is but it was easier. Monica, the reason why it was easier was because I had learned the lesson quickly, early on. And as I was healing and getting better, the next time it bled. What I had to do was overcome my illness, my brain issues, you know, with the blood in there, and all the stuff that was happening in there. Once I overcame that again and sort of started to get healthier and get better. Those lessons were still there, and I was able to capitalize on them again.

Bill Gasiamis 51:47
So the second time I capitalized on it again. And then the third time, it was like, Okay, I’ve had 18 months, I had nearly I think it was two and a half years by then of two bleeds recovery, and then played and then brain surgery. But I had two and a half years of putting new things into place new strategies, new brand procedures, and new ways of living my life. So it was kind of easier because I had new tools already developed. And that was what was good about it.

Monica Azevedo 52:26
Yeah, I’m sure that helped a lot because it still doesn’t make it easy.

Bill Gasiamis 52:34
It’s a bloody setback, blood-brain ain bled again. And now you have to have brain surgery. Now you have to learn how to walk. It’s a setback. And it takes a long time. And that’s one of the things I’m trying to demonstrate I don’t want to gloss over the fact that it took me more than seven years to get full-time time work, a long time.

Bill Gasiamis 52:55
And in that time, there were a lot of setbacks, a lot of setbacks, and I had thyroid surgery in that time as well. So 18 months after my brain surgery, had thyroid surgery because I had massive growth on one of my thyroid glands. So half of it’s gone. And then the adjustment that that does to your body and the hormones and your recovery from that.

Monica Azevedo 53:20
Yeah, because the AVM is not the only thing For most people I was diagnosed with rheumatoid arthritis, I think in 2019. And that was, you know, the symptoms I had it affected my foot and my knees and I couldn’t walk at one time, it was so inflamed, we had to drain out fluid and fit, find out which biologics work the best for my body.

Monica Azevedo 53:47
And so there’s, of course, you’re dealing with, you know, you’re dealing with recovery after stroke, and this AVM that, you know, may or may be existing in your body, and then you have other health issues to just put on top of that, right. So it’s just, that it can change again, like your perspective, and it provides the tools to better deal with those situations when they come.

Bill Gasiamis 54:23
Do you feel like you’re more resilient than you were? Have you always been resilient? How has your resilience level changed? Or the depth of it how is it sort of developed?

Monica Azevedo 54:40
Yeah, I think it changed since the stroke. To be honest. I was kind of carefree but didnly think about it. Some of my actions I guess, I don’t know, I I’m just far more grateful and just truly see the value of life and I just want to enjoy a while in here.

Bill Gasiamis 55:23
That’s profound. And that’s pretty cool.

Monica Azevedo 55:27
That doesn’t man. Like that’s, that’s all I can ask for. And, I mean, there’s like this quote that says, you know, when you die, people are gonna forget at after six months, and then after a year, like, no one mentions your name and you know, what’s left of you that people are gonna remember, you know, it’s going to be the memories that they have with you. So create those fun, amazing memories of the people you care about. And forget everything else forgetting forget other opinions. Like everyone has one, right?

Monica Azevedo 56:05
Just like assholes.

Monica Azevedo 56:12
Exactly. I’m like, I don’t know if I can swear.

Bill Gasiamis 56:16
A little.

Monica Azevedo 56:18
But, yeah, it’s been a roller coaster. But definitely, I feel like I’ve become stronger and more resilient. And just trying to do my best here.

The hardest thing about stroke for Monica Azevedo

Bill Gasiamis 56:45
That’s it? Why not? What has been the hardest thing about stroke?

Monica Azevedo 56:54
I guess, change in general changes uncomfortable. And I’m, I’ve never been a big fan of. So I think that’s been the hardest, just having to deal with the changes constantly.

Bill Gasiamis 57:15
Change thrust upon you. What is it about change that you’re not comfortable with? Is it just because of your personality? Or is it just because, you know, you like the status quo? What is it with change? Because I feel like I was similar. And now I’m not like, I don’t mind things changing on me now and being different all the time. What do you think was a difficult thing about change for you?

Monica Azevedo 57:44
I think some of the changes that I didn’t expect, like, I didn’t expect to have to shave my head, you know, I had long beautiful blonde hair. And, then I had to shave my hair. I was like, oh, that’s, that’s not a change. I was expecting it, though. That wasn’t something I wanted to do. But like it made the most sense. So I think it has a lot to do witonal cuz I know, change is inevitable and changes. Good. That’s how we grow. And I understand that now. Right? But it’s still uncomfortable sometimes.

Bill Gasiamis 58:36
Yeah. You kind of want it to be a little bit on your terms. Good time to deal with the decision that you’re going to make, for example, and understand how you could sort of be in charge of the change that it’s carrying, rather than it thrust the point it’s like resigning from a job rather than somebody. Second a similar outcome. Both of you end up without a job, but one of them is a decision you become comfortable with and you implement and the other one, someone just sort of pulls the rug out under your feet. And just says, say, you’re out here. What has stroke taught you?

What Monica Azevedo learned from her stroke

Monica Azevedo 59:28
It’s taught me to not take things for granted and just really live life for yourself and not for anyone else. Don’t hesitate. Just do it.

Bill Gasiamis 59:47
Do you reckon you were living your life if not for somebody else, but through the filter of somebody else? I felt like I was doing that. As you know, people had told me how supposed to approach my work, but how was Ire supposed to deal with my family what was going to come next? When you get to that stage, this is what you do. And this is how you do. And, you know, I did everything they told me to do. It never resonated with me much. And then I found myself doing things that they didn’t like doing. And then I stopped doing those things. After all of my health challenges, how were you living your life? Do you feel like it was designed through somebody else’s filter?

Monica Azevedo 1:00:30
To a degree, yes, I think also, I was just very, like, not scared, but I, it took me a lot to take the next step forward, you know, I would hesitate a lot and, and to, you know, I didn’t see myself worth a lot of the times. And I would just keep everything the way it was because, you know, I didn’t want to disturb anyone or anything. And now I’m like, Screw it, like screw that, like, I’m gonna do what I want, you know, like to, you know, there’s a degree of everything, right? You’re not just going to do as you please. Because of course, your actions can affect other people or things around you. But in general, I just feel like, I do things for myself, and I’m proud of that.

Bill Gasiamis 1:01:41
Good. How long have you been with your partner?

Monica Azevedo 1:01:47
It’s going to be almost two years. So I’ve known him for quite some time. But when this all happened, you knowhadn’tven’t even been together for a year. And we live kind of far apart. So when he found out he was out of everyone, lived very close, budidn’tesn’t buy he dropped everything and came to Torontostayed stay with me by my side, during the entire process. It’s posed some challenges to our relationship. But man, we’re in a great place right now. And I am glad to have him. And I’m sure he is just as happy and lucky to have me.

Bill Gasiamis 1:02:44
He better be. Yeah, I asked him that. And because of that, I had a sense that, you know, change all these things do impact relationships. And I don’t know whether they have to impact them for the better or the worse, it doesn’t matter. But I know that there’s an impact.

Bill Gasiamis 1:03:02
Because then this person’s dealing with all the things that you’re dealing with, plus the way that he’s also processing what’s happening in his world because his world has had this upheaval as well. And maybe he’s thinking about things you never thought about before, you know, mortality and ill health and all the stuff you know, so I know that I you know, I challenged my wife a lot because I was a completely different version of myself after the stroke and still am, you, you would recognize my personality and all that stuff.

Bill Gasiamis 1:03:40
That’s all kind of the same. But I think the way I talk, and the way I implement things is completely different. And I became a little bit of a preacher after the stroke, and I busted everyone’s chops for quite a while with, well, you shouldn’t do this. And you shouldn’t do that it was probably terrible to be around for a little while.

Bill Gasiamis 1:04:00
And now I’m kind of calmer about the way I pass on my knowledge to other people, I su, purpose and what they should or shouldn’t be doing. I engage in conversations if somebody asks me, but I tend not to instigate that this is what you should do with your life from now on. Take it from the Almighty Bill. That’s kind of ended.

Monica Azevedo 1:04:24
I’ve had the same approach too I would give my two cents all the time. But no, it’s like they didn’t ask you. So just take a step back, and close your mouth a little bit, right? ht. And if they ask you for your opinion, and your thoughts then you know of course share.

Bill Gasiamis 1:04:48
That’s what I wanted to demonstrate that you can still go about being your new version of yourself and living your new self and your new way of going about life and your nutrients, whatever you want to call it. And you can do without busting the chops of your partner and everybody around you, because, you know, I can’t influence my wife to do anything that I feel like she should do unless she wants to do that.

Bill Gasiamis 1:05:15
And then she asks me, how do I go about that? I can tell her exactly how to go about something. But up until that time, you know, why should she stop consuming the foods that I can’t eat anymore? Like, she doesn’t have to, if she doesn’t want to? Yeah, maybe she is not at that stage in her life and all that type of thing.

Bill Gasiamis 1:05:35
And I used to just give my whole family a hard time about food, you know, and all that type of stuff and what they should or shouldn’t indulge in. And yeah, I’ve become like a, like a cleaner eater and a more mindful eater, and all that type of thing. And my family is still the way they’ve always been. And it’s worked well for some of them because they’re in their 80s.

Bill Gasiamis 1:05:58Somee Some of them are seven-year-olds, and some of them are young, where it doesn’t matter what you eat, so they continue to be themselves and be them. And they are all generally healthy, I can’t say that they are unhealthy, and they are terrible with their eating habits, or any of that none of them are like that. But I felt like I needed to improve everyone’s eating habits.

The importance of having a proper diet in recovery

Monica Azevedo 1:06:24
Yeah food could be our poison, or food can be our medicine. And this is something that I’ve been educating myself about a little bit more recently, too. Because, you know, I, we all enjoy, you know, highly palatable foods, like chips and cookies, and, and all those things, right?. And when it comes to whole foods, like vegetables and meat, and what have you, it doesn’t seem to be the top thing on people’s minds.

Monica Azevedo 1:07:07
Buy, you know, I think food can improve your mood, it can improve your physical health as well. It can help in so many different ways. And I think, yeah, if we just educate ourselves more, we can see that and, maybe it might not have the, you know, instant reaction or effect on you, but down the line, you know, it could cause diabetes, it could cause heart failure, or you know, X, Y, and Zed. So maybe right now, it’s not an issue, but maybe down the road, it will be so yeah, I’m sure that’s a conversation for another day.

Bill Gasiamis 1:07:56
It was, and that was the idea I wanted to because I had experienced ill health, I wanted to avoid my family experiencing ill health. And I just became so urgent, and I had to be obnoxious and rude about it, thinking that I was going to stop them from getting where I got, yeah. Yeah. And it was through that, that I was doing it right.

Bill Gasiamis 1:08:16
But yeah, food is really important after a stroke, you need to avoid certain foods, and you need to add certain foods into your diet, because you can either get in the way of your recovery, or you can support your recovery. And that’s kind of where I was coming from. Well, thankfully, they’re all doing well and they’re all healthy. So, you know, I’ve settled down and I’ve just become an example of that.

Bill Gasiamis 1:08:41
Not that I lead by example in my food, or I don’t eat amazingly. But we will go somewhere and I won’t get sucked into the just have one routine like I won’t get sucked into just have one glass of alcohol routine. I’m very comfortable saying not on a drink. Like there’s no need for me to have one you guys have one and then that makes it don’t let that bother you.

Bill Gasiamis 1:09:07
And that was a conversation for a long time. But it’s not anymore. Now people just know that I don’t drink and what Bill What are you having soda water, and they’ll give me a soda water. And the job’s done. So yeah, so good. people are listening and going through what you and I have been through still in their process just happened to them. What’s a little piece of advice I suppose that you would like to leave them with or encouragement or something positive they’d like to leave them with about the journey that they’re on.

Monica Azevedo 1:09:47
I don’t want to get emotional because I don’t know just just keep trying, man. Like it’s it’s, you know, today A might be your really hard day. So I never thought I would be here, right here right now being this confident in myself. So soon i It was such it was so far fetched. So, you know, my advice is, yeah, just don’t give up. Keep trying. And practice gratitude, practice positive self-talk, you know, write down daily affirmations, whatever you have to do to help that become a regular habit. You know, it takes repetition to create habits. And I think that’s a habit to create positive self-talk. It goes a long way.

Bill Gasiamis 1:10:56
Beautiful. On that note, thanks for reaching out and requesting to be on the podcast, I appreciate the fact that you did that. And that you were, I’m gonna use brave because I don’t know which other word to use that you were brave enough to get on 12 months out, while still going through the challenges that AVMs pose, and sharing your story in the hope that it helps other people I appreciate that.

Monica Azevedo 1:11:25
Yeah, I hope, if you can, you know, help maybe one person, at the end of the day, that’s all that matters. And my friend showed me your podcast shortly after I experienced my stroke. Because I was so lost and listening to your story and all these guests, amazing people that you’ve had on your podcast.

Monica Azevedo 1:11:56
You know, there’s so many people that you can relate to and understand. And, again, everyone’s story is so different, right? But there’s something to take away from each of them. And yeah, thank you for giving me this opportunity to share my story.

Bill Gasiamis 1:12:14
You’re welcome. Now, for those people who are listening, and who heard us chat about Monica wanting to connect with people regarding vision issues, I will have some links in the show notes where you can go and connect with Monica, and maybe reach out or if you don’t want to do that, you can just send me an email via recoveryafterstroke.com/contact by my contact form.

Bill Gasiamis 1:12:41
And then I’ll reach out to Monica and connect you guys. If you want to chat. Most of my listeners are in the United States. So there’ll be a better time difference between people in the United States and Canada. Whereas I’m in Australia, but still then even though I am we’ve still been able to connect at a reasonable hour for both of us. So thanks again for being on the podcast. And I wish you all the best.

Monica Azevedo 1:13:11
Thanks, Bill, I wish you all the best as well. Thank you for having me.

Bill Gasiamis 1:14:52
Thanks again for joining us on today’s episode to get a copy of my book Go to Recoveryafterstroke.com/book. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.

Bill Gasiamis 1:15:52
Thank you to everyone who has already left a review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of information to find it easier, and that is making a difference to their recovery.

Bill Gasiamis 1:16:08
If you haven’t left a review or you’d like to do one, please just go to Spotify, Amazon, or iTunes and leave a few words about what the show means to you. If you’re watching on YouTube, comment below the videos. Some videos are starting to get more comments than they used to, which is fantastic. That means we’re creating a conversation. And we’re creating a space for people to come and find more information rather than just the video.

Bill Gasiamis 1:16:35
And also that creates a situation where YouTube makes their video available for more people like you and me to find it easier. If you’re a stroke survivor with a story to share about your experience. Come and join me on the show. You do not have to do anything you don’t have to plan for them.

Bill Gasiamis 1:16:52
All you need to do is be a stroke survivor who wants to share your story in the hope that you will help somebody else who’s going through something similar if you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover.

Bill Gasiamis 1:17:05
There is also a path for you to join me on the show for a sponsored episode. Go to recovery after stroke Contact, fill out the form explaining which category you belong to and I will respond with more details about how we can connect via Zoom. Thanks again for being here and listening. I deeply appreciate you see you on the next episode.

Intro 1:17:25
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their 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.

Intro 1:17:42
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, 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.

Intro 1:18:05
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. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.

Intro 1:18:27
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 called 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 1:18:47
While we aim to provide current quality information and 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Monica’s Story – Brain AVM Recovery – Monica Azevedo appeared first on Recovery After Stroke.

Navigating Health: The Impact of MTHFR Gene Mutation on Stroke Risk

In the complex web of genetic factors influencing our health, the MTHFR gene mutation stands out for its significant implications. This mutation, often overlooked, plays a pivotal role in our body’s methylation process and has been linked to various health conditions, including an increased risk of stroke. Understanding the MTHFR gene mutation is essential for anyone looking to proactively manage their health and mitigate potential risks.

Decoding the MTHFR Gene Mutation

The MTHFR (Methylenetetrahydrofolate Reductase) gene is crucial for converting homocysteine, a potentially harmful substance, into methionine, a beneficial amino acid that the body uses for growth and repair. However, mutations in the MTHFR gene can hinder this conversion process, leading to elevated levels of homocysteine in the blood—a known risk factor for several health issues, including stroke.

The Connection Between MTHFR Gene Mutation and Stroke

Research has drawn a clear line connecting the dots between MTHFR gene mutation, elevated homocysteine levels, and an increased risk of stroke. Specifically, individuals with the C677T or A1298C mutations in the MTHFR gene are at a higher risk. These mutations can compromise the integrity of blood vessels and promote clot formation, thereby increasing the likelihood of an ischemic stroke, where blood flow to the brain is blocked.

Risk Factors to Watch

While the MTHFR gene mutation itself is a risk factor for stroke, its impact is often influenced by lifestyle and environmental factors, including:

• Dietary Habits: A diet low in folate and B vitamins can exacerbate the risk associated with MTHFR gene mutations.
• Lifestyle Choices: Smoking and excessive alcohol consumption can further elevate stroke risk in those with MTHFR gene mutations.
• Genetic Predispositions: Other genetic factors may compound the risk, making it crucial for individuals with a family history of cardiovascular diseases to be particularly vigilant.

Proactive Measures for Managing Risks

For individuals with an MTHFR gene mutation, there are several strategies to effectively manage the associated stroke risk:

• Embrace a Folate-Rich Diet: Consuming foods high in natural folate, such as leafy greens, fruits, and legumes, can help lower homocysteine levels.
• Lifestyle Adjustments: Quitting smoking and moderating alcohol intake are key steps in reducing stroke risk.
• Supplementation: Healthcare providers may recommend supplements, especially methylfolate, to counter the effects of the MTHFR gene mutation.

Seeking Professional Advice

If you have an MTHFR gene mutation, it’s imperative to consult with healthcare professionals. They can offer tailored advice, conduct necessary tests to monitor homocysteine levels and develop a comprehensive risk management plan.

Conclusion

The MTHFR gene mutation is a significant genetic factor that can influence stroke risk among other health conditions. By gaining a deeper understanding of this mutation and taking proactive steps, individuals can effectively navigate the challenges it presents. It’s a journey of personal health management, where informed decisions can lead to a healthier life.

The Interview

Amber Corker discovered that her ischemic stroke may have been caused by a gene mutation that causes sticky blood.

Highlights:

01:31 Introduction
02:01 A series of misdiagnoses
11:04 The MTHFR Gene Mutation
17:10 MTHFR gene mutation and its impact on health
28:25 Managing MTHFR gene mutation with diet
36:20 Dealing with post-stroke deficits
44:16 Stroke recovery and adjusting to new life changes
50:19 High-risk pregnancy due to genetic mutation and blood thinner use
1:00:39 Living with a lifelong alteration after a stroke

Transcript:

Bill Gasiamis 0:00
Hello, everyone, welcome back to another episode of the Recovery after Stroke Podcast. Today, we’ve got a crucial topic that could be incredibly relevant to many of our listeners, if you’ve ever been informed that your blood is sticky or thicker than normal, or if you have experienced an ischemic stroke with an unknown cause known as cryptogenic, this episode is especially for you.

Bill Gasiamis 0:24
And for those who’ve come across the MTHFR gene before and are uncertain about what the mutation means and what the potential health implications are, you’re in the right place, we’ll be delving into the consequences of the MTHFR gene mutation, and how it may relate to various health issues related to stroke.

Bill Gasiamis 0:47
Stick around as we unravel important insights in today’s discussion. Now also, I am so pleased to announce that the book is getting excellent reviews from stroke survivors from all around the world. The most recent one is from Louisa, who says I wanted to share with you that I finally was able to get your book delivered from Amazon and I tell you that I’m only on page 32 and I’m hooked, I love the way you tell your experiences.

Bill Gasiamis 1:15
The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery, where from a personal growth perspective, they were able to transform stroke from the worst thing that happened to them into the best thing that happened to them.

Introduction – Amber Coker

Bill Gasiamis 1:31
To find out more go to recoveryafterstroke.com/book. This is episode 295. And my guest today is Amber Coker, who experienced an ischemic stroke at age 30. Amber Coker welcome to the podcast.

Amber Coker 1:46
Thank you. Thank you so much for having me.

Bill Gasiamis 1:49
More pleasure. Thanks for taking some time out of your workday to be here.

Amber Coker 1:56
Not a problem, I was happy to join you.

Bill Gasiamis 1:58
Tell me a little bit about what happened to you.

A series of misdiagnoses

Amber Coker 2:01
Okay, this was 2016, I woke up on January 15 and the right side of my face was numb. And on my way to work, I work for a university. And we have an employee health clinic. And on my way to work, I decided to stop in there. And the doctor did the normal, you know, feeling of my face and raise your arms, had me walk, talk and everything.

Amber Coker 2:37
And I remember distinctly him saying well, we can rule out stroke. And he said I think you have a sinus infection. Okay, I went on to work and it didn’t get any better. I’m left-handed, and I noticed my handwriting was very bad. But I went on through the day. And the next morning, it was a Saturday and I woke up with a double vision.

Amber Coker 3:11
And I wore contacts and I had my glasses on. And I thought that it was something with my glasses. So I put my contacts in and still had double vision. I was like, Okay, there’s something wrong. So I went to an urgent care walking clinic. And they told me I had a migraine, so they gave me migraine medicine.

Amber Coker 3:33
And this was over on Martin Luther King, Jr. Weekend. So everything’s closed on Monday. But I went back to the urgent care on Monday. And I was like, how long is this supposed to take to work? Because, like my vision is a little bit better, but like my face is still numb. And they were like well it should be working by now. They’re like you need to go see your doctor tomorrow.

Amber Coker 4:02
So I went to my primary care on Tuesday. So now you know, like we’re four days in from whenever I woke up. And she ordered for me to have a CT. And I did that on Wednesday. And then it came back inconclusive. So then she ordered an MRI on Thursday. And that afternoon, it was late in the afternoon. She said I need you to come to my office at eight o’clock tomorrow morning to go over the results.

Amber Coker 4:37
So my husband and I went to when my son was a month shy of turning one. So you know I have an 11-month-old and then my husband and so my husband and I went to her office at eight o’clock. And she said it appears you’ve had a stroke. “It appears” like, either I did or I didn’t like, I’m you know, so she was like I’ve scheduled you with our neurologist that’s in town I live in a fairly small community of 50,000 people, we had one neurologist in town.

Amber Coker 5:23
She said, I got you in on Monday, for an appointment with the neurologist. She said, Now over the weekend, I need you to stay calm. And I need you to not, you know, your blood pressure can’t rise, I need you to stay extremely calm. And I said I’m 30 years old. I have an 11 month old. And you just told me that I had a stroke.

Amber Coker 5:51
And you want me to stay calm over the weekend until I can go to see a neurologist. I was like, are you kidding me? Like, there was like, okay, like, I’ll stay calm. And she said, if anything changes the way you feel anything at all, you get a headache. You know, like, all of a sudden, you can’t move, you know, one of your limbs the same way, anything at all changes.

Amber Coker 6:19
You go to the emergency room immediately. I said, Okay. I had just started a new job here at the university. I have been working for the university for four years, but I just started a different job at the university. So I had to call my boss who had been, I’d been working for her for three months. And I was like, Well, I can’t come to work today because I had a stroke.

Amber Coker 6:45
And she was like, I’m sorry, you cut out. It sounded like you said you had a stroke. And I was like that’s what I said. And she was like, Okay, I don’t know what to do with that. And I was like, me neither I’m sorry. But I’ll be back on Monday. And she was like, I don’t think you are going to be back on Monday.

Amber Coker 7:08
And I was like, Okay, well, I don’t know. So like, okay, well just keep me posted, I guess like, okay. So that night, I woke up at about two o’clock in the morning, and I had a headache. So I wake my husband up and I’m like, I have a headache. So we call my parents to come and get my son. And we go to the emergency room. And I had a wonderful doctor in the emergency room and they did another scan, and they said well, nothing new is happening.

Amber Coker 7:48
So I was like, okay, so you know, I’m there until, who knows how long, and then I go back. So then the rest of the weekend is fine. And nothing else really different happens. And then we get to Monday. And I’m taking a nap before my appointment. And it’s like an hour before my appointment with the neurologist.

Amber Coker 8:12
And my mother-in-law was coming over to watch her son. She had just arrived and the neurologist’s office called. And they said, Well, the doctor just looked at your chart. And he said not to come to the appointment, but to go to the emergency room. Because we don’t have the equipment to deal with how severe your case is.

Amber Coker 8:43
She was like we’ve called over there, they know you’re coming. So you just need to go in there and tell them who you are. And so I’m like, okay, so I get up, I get my husband. We go back to the emergency room. And he goes up there and he says, This is Amber Coker and they just go okay, like they had no idea why I was there.

Amber Coker 9:13
And he was like, well, she had a stroke, and like, bam, all bets were off. Everyone started moving. They’re grabbing me. They’re taking me back. They’re like getting the wrist thing on, you know, they’re like getting me into a room then they start trying to like, take off my clothes and get me hooked up and asking me all the questions to type into their thing.

Amber Coker 9:39
I had like five nurses in there, all doing different stuff. And they’re like, pushing my husband out of the way. And like the doctor that I had seen Friday night whenever I went in there, walks by and he’s like Amber, why are you here? And I was like, well, I and like I was trying to explain to him, but everybody was like moving and talking and he was everybody stops.

Amber Coker 10:07
And so everybody stops. And he was like, why are you here? And I said, my appointment was supposed to be, you know, at 3:30. They called me and they said, to come here instead. And he said, let me make some calls and find out what’s going on why they sent you here.

Amber Coker 10:29
They said she’s not having a stroke right now, you guys like she doesn’t need like, all of this, just stop. So then we wait for four hours. Nobody tells us anything. We’re just in there in the room for four hours. And finally, my husband goes out and he’s like, what’s going on? And they’re like, Oh, we’re just waiting for a room to open up at OU Medical, which is in a big city in a different town.

The MTHFR Gene Mutation

Amber Coker 11:04
And I was like because she’s been admitted. And we’re like, what? And so they transferred me down to Oklahoma City, and they admitted me to the hospital. That’s where I met my neurologist with whom I had been with for seven and a half years. And where they did all of the testing, and I found out that I have the MTHFR mutation gene.

Bill Gasiamis 11:38
Stop there, this, oh, my God. So I’m listening to this and going, surely at some point, they said, send her to the hospital before the 10 days. Someone said, go to the hospital, someone said go and get a scan at the hospital, someone said go and have an MRI. It’s just ridiculous that it took so long.

Bill Gasiamis 12:01
And then it had to go around that massive loop to get you there. And it’s amazing how simple that seems. And yet how everyone missed the critical thing with you, which is to say, you need to get to a hospital. That was it, I can’t understand how that happens. It’s so strange.

Bill Gasiamis 12:23
And to say to blame it on your medical system in America and all the problems over there and all that kind of junk. It’s not fair, because I hear it from people all over the world. It’s just humans. It’s just people that make the wrong call. And I’m not sure what it is. But I can’t even explain it. It’s so strange. I took seven days to get to the hospital because I was the idiot who decided that I was good enough not to go to the hospital.

Bill Gasiamis 12:55
Whereas in your case, you know, you’re unwell, you’re feeling on it, everyone knows you’re unwell. They do a scan, and they confirm it. Everything is supposed to be in your favor to say this lady needs some help. And instead of helping you, they told you I’ll see you Monday, and I won’t be back for a little while. It’s crazy.

Amber Coker 13:23
I mean looking back, I would have gone to the emergency room. I don’t know. I mean, now, like when my face was numb, or when I had double vision, instead of going to urgent care or to, you know, the employee health clinic. However, you know, I was still seeing a medical professional. That I thought, well, you know, if I go see them, then they’ll they’ll tell me. Like, if I needed to go to the emergency room, which they didn’t.

Bill Gasiamis 14:03
Yeah, I know. I know that, oh my gosh the chances that somebody who hasn’t had a strike and listens to this podcast, unless they your friends and family. It’s very low. Most of the people listening are stroke survivors and caregivers. And they probably all like you and me, we know what to do now. But it’d be so good if we could just tell the people of the world. If you have these types of things happen to you just go to a hospital.

Bill Gasiamis 14:03
Don’t wait 10 days before somebody sees you, insist that somebody says you, man, it’s such an intense moment I can’t get over it. But I appreciate how it happens. And I’m glad that everything worked out and that you’re here and you can join us and all these amazing things have happened, right? So we’ve had a really good outcome, all things considered.

Bill Gasiamis 15:03
Oh, my gosh. So the reason I wanted to speak to you when you reached out was because you said something that nobody has ever said before, about the connection to stroke and the MTHFR gene. Now, most people listening won’t know what the MTHFR gene is. However, I do know about the MTHFR gene a little bit.

Bill Gasiamis 15:30
The reason I know about it is because I tested positive for one copy of the gene. So I picked it up from one of my parents. As a result of that gene, I have gone out of my way to change my diet to ensure that certain things aren’t consumed.

Bill Gasiamis 15:48
Now, for people who are listening, and have never heard of that, and watching, can you tell us what the MTHFR gene is, then we’ll talk about why it’s important to know whether you have this particular gene mutation and whether you have one copy or two copies.

Intro 16:06
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 16:31
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about Your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

MTHFR gene mutation and its impact on health

Amber Coker 17:10
Yes MTHFR is methylene tetrahydrofolate reductase. Which is a huge mouthful. And it took me many years even though I have it to know exactly what it all stands for. You know, and of course, the acronym of the MTHFR is really fun. Because you know you look at it and you think it could be something else. And sometimes I feel like it is so the gene mutation that causes the body to not turn folate and folic acid into their active form, which increases homocysteine and your homocysteine levels in your body, which irritates your arteries, which can cause blood clots.

Bill Gasiamis 18:20
Let’s pause there are let’s pause there for a second. Okay, so the MTHFR gene, you can pick it up, you can pick it up from your parents. As a result of that when both of your parents have the gene and you have the gene. What that does is you need to be aware of it because there are certain foods that you cannot do well with you can’t break down you can’t process them in your body.

Bill Gasiamis 18:47
Now when I say foods, not necessarily foods but ingredients in foods, one of those ingredients is folic acid, which is the synthetic form of folate, which is used specifically for women who are going to be pregnant or are pregnant to decrease the chances of neuro birth defects in their children. And then as a result of that, for women to get a lot of folic acid and folate through their diet, because usually it’s found in leafy greens silverbeet a whole bunch of other you know, lovely leafy greens.

Bill Gasiamis 19:38
What they do is what the people that know better to do is they put folic acid in bread in flour, and all flour has added folic acid and the purpose of that is to decrease the chance of neural birth defects. I know it happens in A lot of Western countries, but it happens in Australia. As a result of that, people who have the fat MTHFR gene don’t know, or perhaps getting over, what’s the word overexposed to folic acid? And they shouldn’t be they should be avoiding it. Did I say it well?

Amber Coker 20:27
Yes. Another thing, along with just what the folic acid that they put into food for women who are pregnant, especially during the first trimester, they suggest them taking a folic acid supplement, or also just a regular prenatal vitamin, they have a high, you know, high doses of folic acid. Which, if you have MTHFR, and I don’t know exactly this part I’m not real sure about but the if you have MTHFR.

Amber Coker 21:16
You have a higher chance of miscarriage because of the amount of folic acid that you have. And that you’re like that you’re taking, especially during the first trimester due to your folic acid supplement or your prenatal vitamin. And it can cause miscarriage. And that was one of the first questions after my blood tests came back that my neurologist asked me, he said, How many miscarriages did you have before you had your son?

Amber Coker 21:53
And I looked at him like he was crazy. was like I didn’t have any. And he was shocked. Like that shook him to his core. Like he didn’t, because he just knew he just knew I had to have had several miscarriages before I had my son. And, you know, I was like, I didn’t have any and he was like, how many miscarriages Did your mom have?

Amber Coker 22:21
And I said, Well, she had two she had one before my brother and she had one before me. And he was like, okay, and then he seemed to calm back down. Like he was like, okay, my world is back in order. He was like, You were lucky. And I was like, I mean, I was lucky. But so that’s another thing that it causes because your body is not breaking down that folic acid and folate. It can cause miscarriages as well.

Bill Gasiamis 22:54
So just so we explained things well. You had a specific stroke that has a particular title, which is basilar artery thrombosis. Is that right? Yes. Did I say it well?

Amber Coker 23:13
I had a blood clot in my basilar artery. It was just an ischemic stroke. That was just the fancy term of the location of where my blood clot was.

Bill Gasiamis 23:28
Okay. No worries. So that is not linked to the particular MTHFR gene, the location is just the location where the blood clot ended up anyway. Okay, so your doctor is pretty switched on? Does he give you the details about the MTHFR gene? How does he take you through that discussion? Because you’ve never heard of it before?

Amber Coker 23:52
Oh, gosh, no, no. And I don’t like no, I had no idea. My husband recorded on his phone, the whole thing whenever he came in, but it ended up being like an hour and a half of explanation. Quite honestly, and I think my brain did this kind of to protect itself. I don’t remember exactly how the whole conversation went. But yes, he did come in and he did explain it.

Amber Coker 24:22
The way he explained it to me the first time around, was that because folate and folic acid do not break down, it makes your blood sticky, which makes it more prone to clots is how he explained it. Then that’s kind of real, basic terms there’s more to it than that, but that’s the way he explained it. He said that since and he’s a very, very well respected and very, you know, very good neurologist and he has practiced all over the United States.

Amber Coker 25:09
And he said when he moved to Oklahoma, he saw more cases of MTHFR than he had ever seen. And he thought that it had something to do with the Native American blood. He has no science to back that up. That was just kind of his thought. But he found it very interesting that whenever he moved to this part of the country, he saw a lot more of it.

Bill Gasiamis 25:46
I guess I was gonna say, is there a large Native American community in Oklahoma? Yes. Do you have Native American ancestry?

Amber Coker 25:56
I do. I do. It is not. It’s not strong. I think I’m like one 128 or something. Okay. So it’s not, it’s not like I’m half or a fourth. But I think pretty much everyone if they were born in Oklahoma, or one of the surrounding states probably has somewhere in their lineage, some Native American blood. Just because this part of the country does have was, you know, Native American land for so long. But yes, I have I have two copies, of the mutation.

Bill Gasiamis 26:40
Okay, what’s what does that mean?

Amber Coker 26:44
That means that I got a copy from my mom and I got a copy from my dad. So I was the lucky one. And because, I am homozygous, which means that I have the two copies. If you just have one, then you’re heterozygous. I can’t just manage it with diet.

Amber Coker 27:12
Heterozygous, which my son is heterozygous. He was going to get one copy for me because I have to. So he had no choice. He was going to get one. I did have we had him tested. And he did he just has one copy. So his, his can be controlled with diet and hydration.

Bill Gasiamis 27:41
But you say I also hit a rose Agus hit her out means one homo means to. Okay, I just need to remember this because I keep forgetting. And guess what? Guess what I just remembered, which is interesting. I just remembered that my dad had taken a blood thinner. The reason my dad takes a blood thinner, which I did not know about for many years until I was an adult, is because the only way my dad can describe his is because my blood is a little bit sticky.

Managing MTHFR gene mutation with diet

Bill Gasiamis 28:25
Or thicker. Wow. That’s fascinating. That’s fascinating. So what I’m then certain of is that my children, I’ve got to now confirm again, whether or not I’m heterozygous, or homozygous, I can’t remember now. Now I can’t remember. So I’m going to confirm that. And then I’m going to speak to my children about that. And you said that your son says he’s got one copy. You can manage it with diet? No. What does that mean? How do you manage that with diet?

Amber Coker 29:04
I’m being aware of the ingredients of what he is eating how much folic acid he’s taking, and hydration. That was one thing that the doctors said was staying hydrated. If you’re hetero, you just have the one copy. Hydration plays a very large part in keeping that under control because it keeps the blood moving smoothly through because the more dehydrated you get, the more likely that that stickiness is going to, you know, come through.

Amber Coker 29:46
So staying hydrated and not taking hormones. You know, guys were, you know, males when they’re teens, they want to make that testosterone tight, you know those things to bulk up or whatever, I’ve had to make it, my son is only nine now. But we’ve already started the conversations of like, you can’t do that. Like you, you have to stay like when you’re, he plays soccer.

Amber Coker 30:22
And you have to stay very hydrated, you have to drink lots of water whenever you are playing. And when you get old, and he doesn’t understand it now. But I’ve started early talking when people start talking about taking supplements and stuff to bulk up or be faster, whatever like you cannot do that. Like you can’t do it. Like, yeah, and he knows about, he knows about my stroke. And he knows, like, I’ve told him all about it. And so I think he understands. But we started real early talking about that stuff. Hopefully, it sticks as he gets older.

Bill Gasiamis 31:04
I love that you started so early because I think about it now everything’s coming back to me. All the people that I’ve interviewed that have had a stroke that has got, apparently No, cause they’ve had an ischemic stroke. And they have been told that it is a stroke that they can’t find the cause for that they have no idea why it happened. And there’s nothing we can do and all that type of thing. And I’m thinking about that now. And it’s like, wow, these people may have had an MTHFR gene issue.

Amber Coker 31:35
They should have their blood tested. It can be tested by just a blood test. You know, there’s a specific, it’s not a specific test that they run just like a normal blood test. But I don’t know exactly what it is that they call it. But you can ask, you know, I need to be tested for the MTHFR mutation.

Bill Gasiamis 32:10
I was gonna say to people who are listening and watching if you’re a stroke survivor who’s had a stroke, and it has been an ischemic stroke, and they’re not certain as to why it happened, go to your doctor Monday morning, and ask for a MTHFR gene test, whatever it costs, get it done, because this is one awesome way to prevent further strokes from happening, especially if you’ve had an ischemic stroke.

Amber Coker 32:40
It is also a way to help prevent your family members from having a stroke Possibly, yeah.

Bill Gasiamis 32:50
I just can’t believe I’m just so stunned. It’s somebody that I’ve known for many, many years. And nobody, the people who told me that I had the MTHFR gene just explained to me that I should avoid folic acid. And that’s going to help me with my energy levels going to methylate things better and absorb the energy from my food and process that and turn it into energy. And that makes complete sense to me. But they didn’t give the other deeper explanation as to what the purpose of avoiding folic acid was. So I imagine when you guys go shopping, are you guys forever Turning the pack around and looking at the ingredients list? Again, that’s out?

Amber Coker 33:33
No, we probably should be, but we look more at vitamins. You know, like, just like the daily vitamins that that my son takes and then I take just to make sure that it does not have folic acid and that that’s more of what we do. And then, I mean, I’m aware of it. I mean, I do kind of look to see every once in a while but it’s the diet part is not the part that I that I focus on a whole lot. I probably should but I don’t.

Bill Gasiamis 34:26
Yeah, fair enough. I was just curious how you guys go about living with that kind of information. I know you shouldn’t be over. What’s the word like? Are you anxious about it? And think about nothing else all day every day. I know that you should not be like that. No, I don’t. I just go about my life as normal and I eat foods that contain folic acid as little as possible, but I do from time to time, especially sometimes bread.

Bill Gasiamis 34:57
Usually, I avoid bread like the plague pasta, and all that kind of stuff. Anything that has flour, wheat flour in it, I avoid. But every once in a while I’m going to have some and I don’t think that type of amount of folic acid intake is going to make a difference to my right, right health and well-being, you know, down the track, because I’m not consuming too much of it.

Bill Gasiamis 35:25
Now, what annoys me about this whole folic acid issue is that put it in red, so that women can avoid neurobirth defects. Well, men don’t need folic acid to that extent for that reason. So it’s like weird that let’s dose the whole population when only half the population well, not even half, but we’ll say half the population benefits from having.

Bill Gasiamis 35:49
And I say not even half because some people don’t need additional folic acid in their diet, they have healthy levels, regardless of whether they’re consuming it in this form, or foods. So it’s a really weird thing that governments do, let’s, you know, put a chemical in the food for everybody to consume and then just assume it, it’s going to be fine.

Amber Coker 36:19
Absolutely.

Amber Coker dealing with post-stroke deficits

Bill Gasiamis 36:20
Yeah. You know, with the stroke. So what did you end up coming home with that you had to recover from or overcome? Did you have deficits that you had to deal with, I know that you initially noticed the numbness in your face. And that was there while you were trying to get the diagnosis. What happened after that?

Amber Coker 36:41
When I came home, eventually, the numbness lasted probably about a month, slowly kind of going away. I had weakness in my left arm. And I felt my whole left side. I felt like I walked funny. And that was something then going in Walmart, walking with my husband, I was like, do I look funny? Like, do I look like I’m walking funny? And he was like, no.

Amber Coker 37:18
And I was like because it feels weird. I feel like I’m not walking, right? And he was like, You look fine. You look like you’re walking just fine. So it was very strange to me to do that, I also with a weakness in my left hand, which I’m left-handed, so I had to do a lot of physical therapy with, you know, strengthening my left hand. And it took a long time for my handwriting to go back to normal. So, I do struggle with words, at times.

Bill Gasiamis 38:01
Reading words or speaking words?

Amber Coker 38:04
Speaking words.

Bill Gasiamis 38:05
On the tip of your tongue, they can’t come out or do you not know which word to use?

Amber Coker 38:15
I know what I want to say, but I just have trouble getting it to come out. And that’s you know, I started following your page on Instagram very shortly after my stroke. And I would see it as I’m scrolling through, I would see a post and be like, oh, and it wasn’t just shortly before I reached out to you to tell you about my stroke.

Amber Coker 38:44
I saw a post of yours that said, you know, like if you had a stroke while you were asleep, do you have sleeping anxiety? And I was like, well, yeah. Oh, wow. I wonder if that’s why I don’t sleep. And I kind of just when I was like, huh, like, and I just kind of went on. And then a little while later, I was scrolling through I saw a few days later that you say something about like, do you notice your deficits more when you’re acutely stressed?

Amber Coker 39:21
And I was like, yes, like when I’m highly emotional, like angry or upset. I have a very hard time finding the words that I’m trying to say. And I was like, Oh my gosh, like, and that’s whenever I was like, You know what? This website and like, you know, I’ve been following it for years, you know, and I just kind of scroll through I read it sometimes I’d read the comments, you know, see what everybody else was saying.

Amber Coker 39:52
But just kind of going on through. But it wasn’t until those two that I kind of just stopped and that’s when I went to your website and I listened to podcasts. And then I saw about like, being a guest. And then I was like, I’m just gonna tell him about my story. I mean, who knows? I wonder if you’ve ever heard of MTHFR? Because I sure haven’t. But it was those two things that so yeah, my speech the trying to find a word that is one thing that I do struggle with.

Bill Gasiamis 40:25
The interesting questions, don’t come from me, they come from people who I coach who are trying to overcome their deficits and their stroke. And they make sense to me when I read them. And when I ask people I notice that I also get my deficits to get worse when I get highly emotional. I notice how they get worse when I don’t have a good night’s sleep, that kind of thing.

Bill Gasiamis 40:53
That all makes sense. But sometimes they seem like they’re for me. It’s like, I No, that’s no big deal. That’s normal, I get it. And then I realized that people like you go, Oh, my God, nobody ever asked me that question. Of course, that yes, that is and then they connect the dots. And then that somehow makes things better or different or helps them adjust or change something.

Bill Gasiamis 41:19
One of the strangest things, one of my stroke survivors, who I coach said, was that she hears noises in the affected side, like voices from other people in just the affected ear. So she doesn’t have any ear problems, per se. But on the stroke side, that is affected. She hears noises, words, people talking, and it’s driving her bananas, she says, and she goes, Is that normal?

Bill Gasiamis 41:47
As I’ve got no idea. I don’t know what that is. But let me ask the community, the whole tell us whether it’s no. And sure enough, I asked a question. And bang, people are going, yep, I hear noises. I hear voices. I hear things since the strike in my ears that I’ve never heard before. And what that did say? It seemed to just settle people down about it, it seemed to go, oh, okay, it happens to other people, oh it’s just the result of the stroke, some people played it down, it’s nothing then I can ignore it.

Bill Gasiamis 42:20
And it’s like Wow, yes. I mean, it’s such. My, stroke survivors who I’m coaching and the people who are listening are a wealth of knowledge. And I really, truly appreciate the sharing of that knowledge. Because I learned so much from it, and then we can help other people. But this is important that the MTHFR gene is really important for people to know about. And if they do get tested, it just gives you a little bit more information.

Bill Gasiamis 42:52
It’s not invasive, it’s not hard to deal with when you know about it, and you can just take small preventative steps, especially if you’re the kind of person who’s already trying to prevent another stroke from happening. I think it’s really important. And I love the fact that you had the good fortune after all of that story to end up in the right. doctor’s surgery, and then speak to the right neurologist who knew about their condition and was able to give you a lot of information that you can then share.

Amber Coker 43:24
I love my neurologist. I loved him. He recently went to a Veterans Hospital, just within the last six months. And so, since I’m not a veteran, I can’t see him anymore. So I have a new one. But, I mean, he was with me, I just happened to be very lucky that he was the one working at the inpatient hospital that day, and that he was a stroke biologist he says that he specializes in strokes and that I came in that day. And then because he sees patients, you know, outpatients in the clinic, too. So I was with him for seven and a half years before he moved over to the Veterans Hospital.

Stroke recovery and adjusting to new life changes

Bill Gasiamis 44:16
So even though you’re seven and a half years out, or it’s 2016, so eight years now, are you still getting regular visits with your neurologist and scans and all that kind of stuff? How are you managing this?

Amber Coker 44:33
I don’t get regular scans. But I do go I do go see my neurologist once a year. Just to do well, I’m my neurologist also treats me for migraines. And so when I go more like what right now I’m going more than once a year but that’s just for migraine stuff, but for stroke stuff, it’s once a year Just to do the typical, like, make sure that everything you know this thing.

Amber Coker 45:08
And if anybody that’s gone to the neurologists, you know, if you don’t have to do all of this like, all of the different things. So I do go once a year for that. Because I am on a blood thinner. And it’s been working great, you know, for eight years, so, yes, I do go once a year, and I will be on a blood thinner for the rest of my life.

Amber Coker 45:41
And I will probably see a neurologist. Let’s see, what did he tell me? He said that I could go out 18 to 24 months at max, at some point, but I, I, I’ve always said I feel better going once a year. That’s just kind of like, I just feel better with the 12 months going in just making sure.

Bill Gasiamis 46:09
That’s always good to go to the doctor once every 12 months to just do a checkup do some blood, touch base, and make sure everything’s going well, I think that’s great. So what was the hardest thing about this stroke for you?

Amber Coker 46:26
I would say initially, the hardest thing was knowing that I had blood, a blood clot in my brain. And then it was just there. And at any point, something could happen. I was what my hospital in town calls a frequent flyer in the emergency room for eight months after, because every time something felt weird, in my head, I went to the emergency room, I had more seat tees and more MRIs in the eight months after than any one person probably would have in three lifetimes. Like until, like eight months out.

Amber Coker 47:35
One of the times that I went in, and when I went, I told them, I said, I know like, I know that I sound crazy. Like I know that. But something is off. And this is my history. And I need I need you to tell me that I’m not having another stroke. Like that. That’s what I need. And that at that eight-month mark, they did a scan. And he said I don’t see anything. And I said, except for the blood clot.

Amber Coker 48:09
And he said, there’s no blood clot. I said, What do you mean, there’s no blood clot? And he was like, there’s no clot on the skin. And I said, You mean it’s dissipated? And he was like, I don’t I don’t know. I’m just telling you like, there’s no blood clot in your brain. After that, I was fine. I didn’t go back. I didn’t that I didn’t have to go back to the emergency room every time I knew that something felt off.

Amber Coker 48:44
So initially, it was that fear of when is the next one going to happen. After that, it was the hardest thing was knowing that my life was not going to be the way I planned it. Because I was advised not to have any more children which was not part of my plan. Um, I never thought that I would have an only child. I never wanted to have an only child. And so that was the hardest part trying to adjust to that.

Bill Gasiamis 49:36
That’s a tough one. Why would they say that that was advised why did they advise against that?

Amber Coker 49:44
They said that it was I needed to it had to be extremely planned. Extremely monitored. There could be there could be no accidents. I mean like, I mean, it had to be a very rigid and structured conception, like I mean everything. And even then they would have to, you know, I would be weekly visits with a specialist for the whole time.

High-risk pregnancy due to genetic mutation and blood thinner use

Bill Gasiamis 50:23
Thinking about miscarriages and challenges.

Amber Coker 50:27
Yes and then bleeding out later on. Because they would have to I would have to stay on some type of blood thinner, I would be switched from El Eliquis to a different one. Okay, but then it would be constantly checking in. I mean, they were they did say, you absolutely can. However, it is extremely high risk. Okay.

Bill Gasiamis 50:56
Okay. So two things are going against you so to speak, is the MTHFR gene mutation that you carry. And then it’s also the fact that you’re on a blood thinner to help make sure that your blood doesn’t clot. And in the event of the MTHFR gene, causing challenges to your, to your pregnancy. And then there is a situation where there’s some kind of a complication to that, that your biggest risk after that is bleeding out. Because you’re on a blood thinner.

Amber Coker 51:39
Which seems kind of contradictory, you know, because, like, on one hand, they’re, they’re afraid of clotting. So, on the one hand, they’re afraid of bleeding out.

Bill Gasiamis 51:50
Yeah, yeah. Wow. Okay.

Amber Coker 51:53
It was one of those things where it was, if you do this, it has to be before you’re 35. So it was one of those conversations we had to have every single time I went in.

Bill Gasiamis 52:07
Did you have an ob-gyn involved in this particular conversation? Or did that happen without?

Amber Coker 52:18
No. Because we never got that phone to where I said before, because it was more of a, it was more of a struggle between me and my husband and my neurologist that between the three of us trying before we could even get to the next step of bringing in an OBGYN to you know, as a high-risk specialist for that.

Bill Gasiamis 52:52
And anyway, your neurologist seems like an amazing, amazing doctor. You know, he’s got so many other things that are going on that he’s aware of that he needs to make sure that you’re advised of.

Bill Gasiamis 53:11
So that he manages your health and well-being way beyond just what you guys discovered with a gene. And that he knows like, what the complications are for you down the track, should you choose to go down a certain path, and it’s big, it’s a big call to cite somebody, you probably shouldn’t have another child, but he’s not saying that what he’s saying is, you should be fully aware of the risks, you should make a fully informed decision.

Bill Gasiamis 53:40
And these are the chances these are the risks that you face over and above what say, quote, unquote, a normal person who doesn’t have these conditions will face and I love that about him because that’s not many. There are not many people who have that foresight that do that kind of deep thinking about what the future holds for somebody who’s you know, in their 30s Right?

Amber Coker 54:10
He is an Outstanding, outstanding named Doctor. And ultimately, he did leave the decision up to me and my husband and you know, my husband said I do not want to have a toddler and an infant and no wife so common and you know, right at first you know, I was going every three months every six months, you know, for a long time every six months and then I graduated to like yearly.

Amber Coker 54:47
But you know, for a while there, I was going a lot and every single time it was like do we need to talk? Do we need to have another pregnancy talk? Are we going to do it like are we talking about this time? And every time we would look at each other and we like But no, because we weren’t talking about it. And finally at the last one, when I was 34, he said, This is it. Are we doing this? And I said, and at this point I had I had come to terms with it. And I said, No, we’re not.

Amber Coker 55:20
And my husband goes, well, and I looked at him. And I just I, my eyes got huge. And the choice words that came out of my mouth, and I was like, You have got to be kidding me. And he was like, what? Like, now it’s like, for real? And I’m like, Yeah, I know, it’s for real. It’s like, are you? And I was like, No, we’re not doing this. Because the point, you know, now, my son is talking, and he’s out of diapers, and he’s getting ready to start school.

Amber Coker 55:59
And so I’m like, I’m not starting over. Like, I’m done with that. And I had already come to terms with it. So I was like, no, no, we’re not, we’re not having it. Like, we’ve decided what we’re done. And so my doctor, he just laughed, and he was just like, I love you guys so much. He was like, You guys are the highlight of my day when are you coming?

Bill Gasiamis 56:22
You’re, you’re fair enough as well, to give him the dirty look. He didn’t realize it was real, because he’s a male. And he doesn’t have any of the things that go along with, you know, the, we’ll call it the, you know, the natural cycle that women go through where it ends, eventually, the opportunity ends doesn’t have that he’s never thought about that. Because he doesn’t have to think about that. He’s just going about life going.

Bill Gasiamis 56:49
Yeah, that’d be good. And then he goes, I’m gonna change my mind now. And are you on board? Come on. But I get what he’s thinking, but you’re right, as well is that, your life, when you’ve got young children if you’ve got them young together, it’s chaotic. And it’s terrible. And it’s difficult, and it’s amazing, and it’s lovely. But they it ends, the chaos ends very rapidly because both children go through their phases very close together.

Bill Gasiamis 57:20
And then, and then you’re kind of free, you get your life back, you start sleeping more, you do all these things. And then I know, because I’ve got some friends who have got children that are 567 years after the previous one. And they’re all that pain and suffering of having lovely, beautiful, gorgeous children gets extended, and it gets drawn out. And you’re, and you’re in the twilight zone for too long.

Bill Gasiamis 57:51
And I see them so I know what you mean, I get what you mean. And I think you made the right decision. Either way, you know, you made the right decisions to look after your health and to honor his first request, which was I don’t want a toddler, and a baby and no wife. Like all those things, they’re really important things to consider. And I think you guys have gone about it, you guys have gone about it the right way the hard decisions to make. So what stroke taught you

Amber Coker 58:33
A couple of different things. One is to do what you want and do what makes you happy.

Amber Coker 58:47
Because, you know, you don’t know what the future holds. And life is short and you never know what’s going to happen. And, and the other thing is, it’s taught me to give myself Grace give me to give myself grace, in everything in adjusting to what my new life is going to look like. And give myself grace in adjusting to any deficits and to you know, to just be patient with myself just like I would with other people.

Bill Gasiamis 59:36
Are you hard on yourself? Normally?

Amber Coker 59:39
Yes. And, I did not like not being able to bounce back just right away into what was normal, and I didn’t like that. And I had to adjust my mindset of, you know, it’s okay, because this huge thing happened to your brain, which can alter absolutely everything about you. So, I, like it’s okay that you’re not just, you know, just like that back to how everything was.

Living with a lifelong alteration after a stroke

Bill Gasiamis 1:00:39
Yeah, that’s good to give yourself grace. I’ve met a lot of people who say something similar who are not patient who give themselves deadlines, some people act like their worst boss would act to them in the work environment, you know, they have all these expectations or these deadlines and, and it’s like, this is not a broken foot, you don’t have you don’t go to the doctor, get a scan, get a cost that put it on six weeks, come back, take the cost off a little bit of rehabilitation, and you’re back to normal, it doesn’t it’s not help. No, at all.

Amber Coker 1:01:23
No, no, this it’s a it’s a lifelong alteration. Whatever your deficit may be, or, even if you don’t have any, there’s always that, you know, there’s, there’s always that something is I mean, it’s, it’s an alteration of your outlook on life as well. And it’s like, long, it’s not, it’s not just something that can, you know, slap a cast on, and then you’re good to go.

Bill Gasiamis 1:02:00
For me, I describe it as it’s, it’s like having like a scar, a really serious scar that you’ve got early on in your life. And even though the scar tissue has healed over and it’s gone you can see the sky every day. And every day, the scar reminds you of where you got that scar and how you got that scan. Sometimes you don’t notice it.

Bill Gasiamis 1:02:19
But sometimes you notice and you remember that that scar happened. And this is the way that it happened. Now, scars fade, which is cool, right? They fade and they get less obvious. And that’s our stroke kind of evolves, it can for very, very many people fade, get less, take less space up in the front of your mind.

Bill Gasiamis 1:02:43
And it can just sort of head to the background a little bit and it does do that. But yes, most people I’ve spoken to have had a stroke that is 510 1520 years out. All talk about it still as if it’s something that they’re dealing with managing overcoming. Moving Beyond living with. Yes. Yeah. Yeah.

Amber Coker 1:03:11
I mean, it’s just you live with it. So yeah.

Bill Gasiamis 1:03:17
Move on I, what’s something that you want to tell some other people who are listening? That may have been through something similar to you, obviously, with regards to the stroke, but then obviously, with the news that maybe you should avoid future pregnancies, that kind of thing? What kind of advice would you like to leave them if somebody has been given that type of information that it’s just fresh for them now?

Amber Coker 1:03:46
It’s okay to mourn the Life You thought you were going to have or the future children that you thought you might have. Like, that’s okay. Hey, it’s okay to do that. And that just because you haven’t had them doesn’t mean that it’s not a lot less for you. So that, you know, Greve however you need to. And take the time that you need to, to adjust to what your new life is going to look like.

Amber Coker 1:04:31
I can’t imagine at this point, having any other children other than my son, I was meant to be the mother of an only child. I was meant to only have a boy. I always thought I wanted to go, girl. I don’t know what I would do with a girl. I have no idea. And so it’s although it’s not something that I would have chosen to only have one, it was the right thing for me. But like I said, it took four years for me to get the initial, hey, you probably shouldn’t do this.

Amber Coker 1:05:16
And all of the risks and everything to that final appointment where I had come to terms with it. And I said, no, like, final answer, we’re not doing this. It and and it did, it took four years for me to get there. And that’s okay. It’s okay if it takes you a long time. And it’s okay. If it takes you longer than four years. You grieve, however, you need to

Bill Gasiamis 1:05:49
do like that. Giving people that space to take to let the process just take the course that it needs to take, that’s important. And in that time, for some people, you might need therapy, you might want to go and chat to somebody about that support groups, you might need to do all of that stuff, which is all fine. And that will help. So I love, that gift of giving people the time that it takes. And we don’t know what the length of that is. It’s just however long, it takes for you to take

Amber Coker 1:06:27
No problem, whatever, whatever it takes. Yeah.

Bill Gasiamis 1:06:30
Thank you so much for reaching out. And joining me on the podcast, I appreciate it. I learned a lot today. And it’s very rarely that I connect the dots in, you know, things that I’ve read about because I read about the MTHFR gene 12 years ago, it’s very rarely that I can then connect the dots, and then make that a really good compelling story and give people a lot of amazing information about what they can do to protect themselves from avoiding another stroke perhaps.

Bill Gasiamis 1:07:02
And that’s what I said earlier about how the community knows. And all I’ve got to do is ask and I just love the fact that you knew that. And that you could tell that. I don’t like the fact that you had to go through a hard time to find that out. But I appreciate that you’re willing to share it.

Amber Coker 1:07:23
Yes, thank you so much for having me.

Bill Gasiamis 1:07:26
Thanks for joining us on today’s episode, I hope you’ll learn something new. To get a copy of my book go to recoveryafterstroke.com/book. To learn more about my guests, including links to this social media and to download a transcript of the entire interview. Please go to recoveryafterstroke.com/episode Thank you to everyone who has already left the review. It means the world to me, that podcasts live and thrive because of reviews.

Bill Gasiamis 1:07:53
When you leave a review, you’re helping others in need of this type of content to find it easier, and that is making a massive difference in their recovery. If you haven’t left a review and would like to leave when the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube comment below the video I love responding to comments on our YouTube videos.

Bill Gasiamis 1:08:19
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor who wants to share your story in the hope that it will help somebody else going through something similar.

Bill Gasiamis 1:08:35
To connect with me just go to recoveryafterstroke.com/contact fill out the contact form and I will be in touch with more details about how we can connect via Zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.

Intro 1:08:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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 in all content on this website at any linked blog, podcast, or video material control.

Intro 1:09:13
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. 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.

Intro 1:09:36
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. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.

Intro 1:09:52
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 called 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 1:10:12
While we aim to provide current quality information in our content, we did 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 the links we provide however, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Ischemic Stroke and MTHFR Gene Mutation – Amber Corker appeared first on Recovery After Stroke.

Eddie Burnias’ fear of doctors may have been a contributing factor to his hemorrhagic stroke when he was 53.

Highlights:

01:14 Introduction
01:46 The first signs of hemorrhagic stroke
09:10 Insurance challenges
14:56 Family support
23:33 Family dynamics and healthcare decisions
28:39 High blood pressure and stroke prevention
33:35 High blood pressure and its risks
40:20 Stroke Prevention in California
47:18 Nutrition, food choices, and health
51:44 High blood pressure and stroke challenges
58:15 Stroke recovery with a survivor and expert insights

Transcript:

Bill Gasiamis 0:00
Hello, everyone, thank you once again for tuning in to the Recovery after Stroke podcast. Whenever I have created something like a podcast episode, or I do a live presentation, and most recently, when I wrote the book, I get overtaken for some time by a sense of trepidation about what I’m delivering and how it will be received.

Bill Gasiamis 0:23
So it’s always a lovely thing to read a review, this time on Amazon, from someone who purchased a copy of my book, The Unexpected Way The District Became The Best Thing That Happened. The review was glowing, and it gave a five-star rating. The review titled Read a Must-read for Stroke Survivors and then continues with, I wish I had this book while I was in the rehab hospital and not two years later.

Bill Gasiamis 0:53
Bill is a great guy, which I agree with, check out his podcast. So thanks to everyone who has purchased the book already. And given the positive feedback. If you want to grab a copy, go to Amazon and type in my name, Bill Gasiamis In the search, or just go to recoveryafterstroke.com/book.

Introduction – Eddie Burnias

Bill Gasiamis 1:14
Now this is episode 294. And my guest today is Eddie Burnias, who has a fear of doctors so much so that he once opted to give himself six stitches when he injured his hand. And that fear of doctors ultimately contributed to Eddie experiencing a hemorrhagic stroke. Eddie Burnias, welcome to the podcast.

Eddie Burnias 1:39
Thank you. I appreciate it. Glad to be here.

Bill Gasiamis 1:42
Great to meet you, man. Tell me a little bit about what happened to

The first signs of hemorrhagic stroke

Eddie Burnias 1:46
So on Thanksgiving. I had my stroke at 23. So Thanksgiving being my favorite holiday, it sucked. It came on unexpectedly. I never even had any headaches or any clue that it was gonna come. My type of stroke was called a hemorrhagic. I hope I pronounced that correctly.

Bill Gasiamis 2:21
Was it a bleed in the brain?

Eddie Burnias 2:23
Yeah, it was in the back of my brain from where I’m told. So what happened is just at night, like it was a normal night, I had no symptoms coming up to it other than my high blood pressure. I got up to go to the restroom and the moment I slipped out of bed, I fell, hit my head, and got back up, thinking I just stepped wrong or I stepped on my side and they laid back down to go back to sleep.

Eddie Burnias 2:57
About an hour and a half later, I got up again this time no one’s home, my girlfriend, everybody was gone. And I get up again and again I fall. I think something’s wrong. You know, this is not normal. I try to get myself up. But now my whole right side is not working. It’s numb, I could feel it. But I can’t control it. My arm and my leg just weren’t doing what I wanted him to do.

Eddie Burnias 3:29
So I physically just got myself up with my left side and washed my face. And then I heard my stepson come in, in the house at the time. And I called him over to help me call 911 because I couldn’t even dial 911. I think everything was happening so fast. My left side worked fine. But I couldn’t comprehend how to use the phone properly. To put it in my left hand. It was weird. Anyhow, I got taken by the medics team. They took me to a hospital. Stayed there for five days. And I’ve been recovering ever since.

Bill Gasiamis 4:17
I was gonna say so you’re you had the phone near you. Are you able to tell the phone to make a phone call for you? Or?

Eddie Burnias 4:25
Yeah, the funny thing is, yeah, I brought I do have it and I have. The funny thing is that I have, you know, speed dial on the phone. So I called my mother and I told her, Hey, Mom, something’s wrong. I think I’m having a stroke. And she freaks out and hangs up on me. So now I’m like, I don’t know what to do.

Eddie Burnias 4:49
And that’s when I heard Michael come through the door. And I called over for him and we called 911. And that was taken care of but yeah, it was kind of it was kind of Have I like I’ve never experienced it. But I gotta say that this has been a life-changing experience. I mean, he’s changed everything.

Bill Gasiamis 5:12
Yeah, Eddie, that’s weird that you would call your mother instead of 911. And then she hung up on you the worst.

Eddie Burnias 5:22
Yes, you’re here, because you’re panicked. Let me backtrack because I’m a pretty physical guy. And I don’t like to I don’t like doctors. I don’t. I’ve given myself ditches. That’s how I wish I wanted to stay away from the hospital. But my mother, my mother knows that. Yeah. My mother knows that.

Eddie Burnias 5:45
So she panics when and when and when, you know, I’m calling her out. She’s like, What the hell is going on? So, you know, luckily, she got a hold of them while Michael laughed and they communicated and they worked out the details. But yeah, my mom was hung up on me at first.

Bill Gasiamis 6:03
I can’t move forward until you tell me why you what happened. And how does somebody give themselves stitches?

Eddie Burnias 6:11
Well, because I seem, to I grown up with my my stepfather. He was, he had lung cancer. And every time we went to the doctor, it was always bad news. So I grew up thinking that you know, the hospital was something that you go to whenever you something’s bad gonna happen. So I had it in the back of my mind. So one day, I didn’t even know we were outside playing or something. And I slipped and I gasped my hand.

Eddie Burnias 6:45
I don’t know if you can see it, but it gassed down. Middle East, right, right, my middle finger. I had to give myself six stitches. So and then on top of it. This is my I’m right-handed by given with my left hand, which wasn’t that good to experience. But actually, you don’t see a scar too bad. So I think I did pretty well.

Bill Gasiamis 7:08
Relations when you found your calling, that’s crazy. So yeah, I understand the whole I’m afraid of hospitals thing because yeah, that growing up and seeing, you know, somebody being unwell when they’re at the hospital can leave an impression, of course. But what you didn’t realize is he was going there for help. You thought he was going there to be unwell.

Eddie Burnias 7:39
Yeah, exactly. I know, like I attributed to every time we went to the hospital, it was like it was it was a journey for something bad. It was and there was never anything ever good. And we never went there and got good news. It was always worse or it just wasn’t a good experience for me as a kid. So like, I never, you know, even to this day, I stopped. I mean, I stopped going to the hospital.

Eddie Burnias 8:06
And I think that’s what led to my experience with my stroke is you know, my first off, I gotta say, it’s, you know, it’s a pleasure meeting gave you given us an outlet to do this. And to get out to the people to, you know, that are having similar situations. But mine, my situation, I think was preventable. Because I had high blood pressure.

Eddie Burnias 8:36
And I didn’t, you know, I wasn’t educated enough to realize that it’s really important for you to take your medicine and to keep your blood pressure down. Because I was I thought myself as Superman. I’m young. I was, you know, I’ve hurt myself, but I got it, I heal. But this thing was just I wasn’t, it wasn’t anything like I mean, I’ve experienced. It’s changed my life completely. I’ve been told I’m a nicer person, because you believe that I thought was a nice guy. That’s all.

Insurance challenges for Eddie Burnias

Bill Gasiamis 9:15
That’s crazy. So your stepson finally comes to find you call 911. You end up in hospital for five days, a place you don’t want to be there till you’ve had a bleed on the brain. What? So how do they go about resolving that for you or helping you with that? What do they do? What’s the if you’ve

Intro 9:37
had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, doctors will explain things that you’ve never had a stroke before.

Intro 9:58
You probably don’t know what question to ask, if this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.

Intro 10:20
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

Eddie Burnias 10:40
Here’s the crazy part. We’re here I’m in California, just to let you know, background but honestly, it’s I didn’t get much. I mean, they came to my experience there they wouldn’t let me sleep. Obviously. I just was tired. For the first three days, I was exhausted. I just wanted to sleep. But they wouldn’t let me sleep they woke me up every hour. I got to get up and walk after the second day, I’d have to get up and try to walk.

Eddie Burnias 11:15
So about the third day, I’m walking with the limp, but I’m not but I am walking using one of their rollers. You know, but I am I can move. My thoughts are there. And even you know, even to this day I do get sidetracked quite easily after my speech is there. But sometimes I forget the words. Like I had no what I was saying, or what I was gonna say, but I just couldn’t think of the word. It’s kind of frustrating.

Eddie Burnias 11:50
But then I come back, they come and tell me that I had a minor stroke, if there’s such a thing, because if you haven’t had a stroke, there’s no fucking thing no excuse my French, but there’s no such thing as a minor stroke. It was scary as hell. So, I mean, it’s just, it’s changed everything in my mind. I can talk now I can I can move again, which is great. And I feel sorry for others who have gotten even more shares than myself.

Eddie Burnias 12:23
But that’s why I’m here because I wanted to get my story out and I wanted to let people know this, this, this can be prevented, especially if you if you’re in a situation like mine, where you know, you don’t like the hospital, you don’t like going to doctors, you got you you take your medicine when you’re having a headache and then goes away and he stopped taking medicine.

Eddie Burnias 12:44
Well, you know, when it comes to blood pressure, I you have to you have to continue to be stringent about it and make it a habit. Make it a part of your life. Because otherwise you’re gonna end up in situations like mine in the making even worse. And it’s I wouldn’t wish this upon anybody. But, you know, it’s it is a life-changing moment. But it also affects everybody around you, not just yourself.

Bill Gasiamis 13:12
You know, so, yeah. So you’re, you’re getting back on your feet. Your speech has come back. And your thoughts are okay. And then they send you home, day five or day six.

Eddie Burnias 13:29
Yeah, to day five, they sent me home. , I’m on my own to the Allegheny pamphlets to read. But it’s like, you know, I had to read it myself. The doctors were telling me they wanted me to go to therapy and stuff. But let me sidetrack, also, my insurance at the time. My insurance was I was weak. I’m going through a worker’s comp competency situation on top of everything.

Eddie Burnias 14:01
And I’ve been off since April of 20. Last year, on November 1, my insurance got canceled. So when my stroke happened I didn’t have any insurance so it was it was here in California. That is not a good thing. So basically, I’m getting pushed out the door as quickly as I can without any medical backing.

Eddie Burnias 14:30
I’ll get good now I got everything squared away now but it took me a good two months after the stroke to get you know my insurance in hand and all this and that but it was tough, you know without any without. If I couldn’t speak my job would have been worse. I honestly don’t know where I would be right now because you don’t get much help without you having medical insurance here.

Family support while dealing with high blood pressure and stroke

Bill Gasiamis 14:56
Yeah, so you were you went home alone. As in, you went home because your partner doesn’t live with you. Is that Oh, no, no, no,

Eddie Burnias 15:07
I take it back. I’m sorry, I went home with my family. So you know, not only that but what I mean, what I mean by alone is I didn’t have any doctor. The primary care.

Bill Gasiamis 15:18
Support, you just went home. Yeah.

Eddie Burnias 15:21
So I was, you know, trying to try to educate myself. And that’s how I came upon you, I went to the, I went to Barnes and Noble and tried to get books there, I went to the library and tried to get books to, you know, read up on my case in strokes, and when, because I have not experienced it, and none of my family has had one.

Eddie Burnias 15:42
But I came across a new one day on my website. And, you know, I, you know, I’m a hard listener now. So I’ve been listening to all your podcasts. And, you know, it’s, it’s, how should I say what you’re doing is a godsend, because you give people that that don’t know, like myself an avenue where we wouldn’t have won. If I get emotional.

Bill Gasiamis 16:16
I’m glad it’s helpful. And, look, when I went through it in 2012, I went home the same as you. The only difference was my insurance, all that kind of stuff was fine, as far as that was concerned. But we went home, with no idea, no clue what to do. What? How do you how do you be somebody who’s got bleeding in the brain? How do you like to interact with the world, it was a mess, right?

Bill Gasiamis 16:43
And in 2012, there was nothing on the internet, I couldn’t find any help you could find a book in the bookstore, but you couldn’t do anything. There was a lot of stuff about peripheral things you can do to support your weight, to lose weight to improve your fitness, you know, there was a lot of stuff around all the things that we needed, there was a lot of stuff that around all the things we needed.

Bill Gasiamis 17:10
But they weren’t sold as being specifically for people with brain injuries or with stroke, injuries, or any of that stuff. So I had to go on that journey myself as well, and learn and research and research and research and be my advocate, and try and find other people that were like me, it was impossible. So I thought stuff. I thought to myself, I’ll start a podcast and I’m sure I’ll find people to come on, I’ll learn from them, they’ll learn from me.

Bill Gasiamis 17:38
But I didn’t realize how, necessary it was I thought I was just solving a problem for me, I didn’t realize I was solving a problem for a whole bunch of other people. And I’m glad I am. I found my purpose through this work. Like I appreciate the fact that it exists. And that I get to do it. And it led to the book that I wrote, you know, it led to me putting together all that new information that I had about how can I heal from a stroke. How can I overcome that?

Bill Gasiamis 18:10
It led to me going well, other people need to know about what I’ve learned and what helped me I don’t know how I’m going to reach them. The podcast is a good way to sort of start and talk about the topics that I want to talk about with people but you can’t in a podcast you can put it all in one place like in a neat little package and give all that information to people but you can’t put it in the book. So yeah, that’s how it is.

Eddie Burnias 18:42
Order I just ordered your book. So I bet exactly what I got I have it on Audible but I ordered a hard copy. Also though so the hard copies come in the mail but I already started to divert your read half of it. There’s a lot of useful information in there I mean really, like first off I didn’t even know what type of stroke I had.

Eddie Burnias 19:05
Without your seven questions, I wouldn’t have known that like there’s those are very helpful because when you’re going through and just say I’m so new to it that I’m very in my third month of recovery so I’m a baby when it comes to this stuff I’m you know I’m soaking up knowledge here and here and there. And like you said 2012 2024 is not much there’s not much information on stroking out there.

Eddie Burnias 19:32
There’s probably more than there was in 2012 but there’s not much there isn’t there you know like you said it’s called a comparison guys compared to what you were you went to there is more but it doesn’t get to how you should treat this up, what you should eat, what steps you should take To whom you should talk to how to involve everyone around you.

Eddie Burnias 20:05
Because that’s everybody’s, it’s a multi everybody in your family. You know what I mean? So one thing is, it got us closer to my family, which is a blessing. You know. So the only bad thing for me that I can say is that in the experience itself, I’m still my right side of my body is still not fully cooperating.

Eddie Burnias 20:33
But it’s, I mean, I’m farther along than I was two months ago, I walk, you know, three to five miles a day now. We’re the first month I was, I mean, the first week, I was barely able to stand up. You know? I do.

Bill Gasiamis 20:49
So with the family with the family, you guys. But so you’re a nicer guy, you things with the relationships are better. Did that just happen? Or did you go after making those things better? What are you thinking in the background? Like, me, when I was doing that, I was thinking, I might not be here in six months, I better make everything good. How do you get to it?

Eddie Burnias 21:17
Well, mine, a CMO I am I’m gonna quit. You know, I’m stubborn. I’m a first-generation Mexican, American. And we’re not men don’t cry. Men don’t. Are we don’t show affection, we provide. And that’s, that’s how that’s how we show we love each other. But this has changed it. So you know, it’s gotten me more open.

Eddie Burnias 21:48
I talk more. Before I had an issue, I would, I would keep it in and commitment came to the Gaussian day know the word, but I can’t think of it right now. From pop. Exactly, exactly. Thank you, you remember, Nostradamus, but anyhow, we, we do that? You know, and it’s, it’s not good. Because it eventually eats that, you know, and it’s, it’s and people you shouldn’t only do are your family not you know, I’m all for therapy and therapists and, and help.

Eddie Burnias 22:25
But if you’re dealing with something, I think your family, especially the ones you love the most should be part of it, you know? And where I’m from, it’s not like that. It’s like you You don’t need to, you know, why do I need to tell you my problems, because you’re not going to be able to solve them I have to solve them. That’s the attitude that we know I come from. And it’s not that it’s not a good attitude, it’s not a good attitude to have.

Eddie Burnias 22:52
You know, vocalizing it vocalizing what I’m going through with my family is it’s open doors. You know, it’s gotten me, I’ve met people that I probably wouldn’t have ever met had not had the stroke. I’ve had I’ve gotten boost intel that I would never, ever, ever have had to ask and help me. Because I was not the kind of person to ask for help. I do everything myself. But, you know, what showed me like, Who’s, who’s there for you? You know, and it’s important to take and give back.

Family dynamics and healthcare decisions

Bill Gasiamis 23:33
Yeah, that’s important, what you just said, to give back. And that’s, that was what happened to me, I feel, I don’t feel obliged to give back. But I feel like I must give back. Because, like you people came out of nowhere. They did a whole bunch of things that I never expected them to do. People I never knew. And then it’s like, and on a second, I’m not sure I would have helped you if you were in a bad way. I don’t know if I would have done that.

Bill Gasiamis 24:03
Do you know, I really don’t know, if I would have stepped up, therefore would have been that kind of guy. So I appreciate it. And now I think I want to step up and be that kind of guy. I want to make sure that when people need help no matter who they are, if I can offer something, I don’t care what it is going to offer it instead of walking away and letting somebody else take the responsibility to take that job.

Bill Gasiamis 24:27
I’m happy to go and do what I can for people. It’s far better. I completely agree with you. What’s interesting about you is you see it from a Mexican background, right? However, I know that the Mexican family is the most important thing. And yet you’re in a family you’re in a Mexican family.

Bill Gasiamis 24:48
You guys are all close in a way by your communication is keeping you makes you was it making you kind of like a little more distant even though you’re close. to your family and your family’s importance, it seems like the lack of communication that you were doing was sort of keeping you a little bit outside where you wanted it to be.

Eddie Burnias 25:10
Yeah, well, it’s like I said, we’re close. But we’re close in in. We don’t talk, we don’t talk about our problems. That’s just something we just don’t do. Because you’re, you’re we know you’re a man, your oil, the way your raises you, everybody has problems, why put your problems on anybody else? You are a man who solves your problems. But sometimes you need that extra help, you need help to solve your problems.

Eddie Burnias 25:41
Everybody does, you know. And that’s, that’s the thing. So that’s what this has done. It’s, it’s been more vocal. It’s lately it’s, my wife says, now that I talked too much. So that, you know, she’s all in before you never do these. Tell me what you asked me. I mean, I can’t help but now. It’s like, I tell her everything. How I feel I’m feeling if I, if I you know, before, if I had a headache, or I wouldn’t feel well, I would, I would keep him to myself.

Eddie Burnias 26:14
And pretty much it’d be grumpy. You know, I think it would if it wasn’t I would take out the grub my illness or whatever up on my family that is that close to you. And now it’s different. It’s, you know, we talked, he has one skit about his uncle and his aunt, were you saying that? That guy that his uncle is sick, and his wife keeps telling them, You need to go to the doctor, and you need to get you know, get a colon check.

Eddie Burnias 26:47
And he goes, that’s not something that we need to do. I mean, I have nothing, nobody touched me there. And so she finally convinces him to go. And he ends up having into finding a tumor. And so now, he gets all he goes back, they go back home, and he’s all the See yesterday, I was all fine.

Eddie Burnias 27:06
Today, you made me go to the doctor and I got cancer. You still, it’s like, that’s how we are? We’re, we’re not, we’re not we’re not pro-pro hospitals or pro, like their fists or anything like that. Proactive. Yeah, or proactive. It’s just like, we were more reactive, we wait and or we’re waiting for the bad news to come. You know, we’re waiting for that, instead of being proactive, and then just concentrating on the good, because there’s a there’s a lot more good than bad.

Bill Gasiamis 27:46
And then if you know that something is there, you can actually take action and resolve it, maybe you can treat it, maybe you can prevent it from happening. You know, that’s the whole thing about knowing about your blood pressure needs, since I know about it, and I have medication, I can prevent a stroke from happening.

Bill Gasiamis 28:06
If I pretend that it’s not happening to me and that I don’t have a problem with my blood pressure, then I’m looking at the cliff, I could fall over the cliff any moment because I’m not paying attention to the sign that says don’t step over there. You were doing that, that you felt like it’s not such a big deal, you made a medical decision about what it means to have high blood pressure that you shouldn’t have made. The decision was, well, this is not a big deal. I don’t need to take my medication. Yeah, it’s very common, though. Very common.

High blood pressure and stroke prevention

Eddie Burnias 28:46
Yeah, that’s what it is. A lack of education is a lack of education. Because like I said, my, my, I think my stroke could have been preventable, because I had medication, I had everything at my hand at everything I needed to take care of myself, the help, I had the doctors, I had everything I needed, but I chose to be a knucklehead and not follow directions as I should have. I will take my medication when I start feeling down or start having a headache here.

Eddie Burnias 29:20
I would take my blood pressure medication and then they would go away and then I’d stop. And it just got to the point where I wasn’t taking I wasn’t checking my blood pressure either like regularly to see how high I was or how low I was. Now it’s like I take my blood sugar every day every morning just to make sure I’m taking my medication and my blood pressure is down to normal like it shouldn’t be.

Eddie Burnias 29:48
But I wouldn’t have known that and how important it is to, you know, monitor something like this. If I hadn’t had this job Um, the same thing with with my friends. You know, I got buddies that are same way, same age, close to the same age that are just as knuckleheaded as I am, who think they’re Superman, you know, who just think, you know, I’ve hurt myself, I’ll heal. But there are some things that you just can’t heal.

Eddie Burnias 30:21
There’s something that you can’t control that is beyond your means that is beyond your younger self, that you need someone with medical expertise to help, you know. And when free and the blood pressure thing that’s, that should be taught in school. Oh, man, that really should because it’s when they say it’s the silent killer. It is.

Eddie Burnias 30:43
Because I had no, I didn’t have any idea. Or even any, any, like, I should say, any symptoms leading up to my stroke. That night when I went to bed, I was normal. I was like talking to you just like I am now. And then I went to bed and all of a sudden, I couldn’t use my right hand. And I can’t use my right side. It’s that that’s how silent is because it got you like that.

Bill Gasiamis 31:19
When they gave you medication, and they realized that you had high blood pressure, do you know how high it was? To know when the?

Eddie Burnias 31:27
Yeah, my I was one? I was averaging 185. Over 130. So it was high. Yeah, it was high-end up creating crazy parties. Yes, last just last night. I’m over here at my buddy’s house. And we’re talking about this because I’m trying to preach to everybody now. One of my buddy’s brothers comes in and we check our time I bring my blood pressure checker with me all the time. Now I have one in the car.

Eddie Burnias 31:55
And we sit down and I have it here with me and the ugly man started shitting giggles and is trying to check your blood pressure. His blood pressure was 195 or 140. Like, oh my God, that’s normal. He says all that’s normal for him on that, you know, you need to go to the doctor you need to deal. You don’t understand you. You’re skating on thin ice here. Eventually, its dice is gonna crack trust me, you’re gonna, you know, something like that.

Eddie Burnias 32:28
And that’s how knucklehead I was like, these are my friends. And they’re just as bad. You know, when it’s because of lack of education. You know, it’s, it’s a hassle. It’s a hassle also to have to miss work or miss something just to go to the doctor and wait two hours, you know, to get it to be seen and to be treated. But, you know, if you look back, I’d rather do that than have them on the other side of the coin, where you’re getting hurt or you have to be in the hospital and then there’s nothing you can do.

Eddie Burnias 33:06
I could have gone the other way my stroke like this a minor but it could have been a lot worse. I couldn’t get it where I can’t speak because I’ve seen that, you know now, I’ve seen other people that have gotten more that when they can’t walk or even when they talk they’re there their speeches change. Half of their faces are numb a lot.

High blood pressure and its risks

Bill Gasiamis 33:35
Did your friend go to get it checked out afterward?

Eddie Burnias 33:39
The way that the way we got him to go. We told his wife, we had a goal. We had a goal above his head to go to the boss. Yeah, because otherwise, you know, he would have been he would have been deciding, you know, if I’m good. I don’t have a headache. I’m not I feel good. That’s exactly how I felt. You know,

Bill Gasiamis 34:03
many years ago, I was volunteering for the Stroke Foundation here in Australia. And they used to do a program where they would go into one of the big shopping malls. And they would set up a blood pressure check stand. And we would encourage people to come over, put their hand in the machine, check their blood pressure, and go away, you know, for free. It was no big deal.

Bill Gasiamis 34:30
People come over and then there’s guys come over and the blood pressure is 190 over 130 Yeah. And it’s like how do you feel man? Not feel good. Okay, so what we’ve found is that your blood pressure is 190 over 130. And what we suggest is that right now, the first thing you do is you leave and you go to the hospital and they’re looking at you like a weird because dude is trying to buy some stuff, you know, with, with a family or have come to dinner or whatever, and I’m going home.

Bill Gasiamis 35:09
And that is double what it should be. And you should go directly to a hospital and get that checked out because you’re at risk of stroke. And the guy’s got no clue that he’s at risk of stroke and doesn’t feel like he is at risk of stroke and probably never met anybody who had a stroke because of high blood pressure. And convincing him to do that is difficult. But hopefully, and then we can’t make them go to the hospital, we can’t call the doctor or anything.

Bill Gasiamis 35:42
But we can encourage them. So we give the guy a massive shock, just walking past and getting a high blood pressure rating and then being told that he’s at risk of stroke. So it’s hard to comprehend that, that if I feel okay, if everything seems normal, if everything is, is my everyday life, like if anything is just the same as it always has been, it feels very difficult to try and make that person bridge the gap from actually I’m not okay I need to take action. This is potentially very serious or life-threatening.

Eddie Burnias 36:25
Yeah, that’s the thing about blood pressure. It’s hard to comprehend the fact that because it doesn’t give you any symptoms, you’re not okay. You’re you know, you’re not, you’re you’re you’re you’re you’re right, you’re riding around with an expiration date on your hand. And I mean, we all are, in the long run, but we’re talking about this is going to shorten your expiration date. It’s like bad milk.

Eddie Burnias 36:49
Yeah, believe me, your milk in there for too long that milk is going to start to stink. You know, that’s what’s happening. You’re not taking into consideration the fact that internally, you’re not doing good. You might be all good on and 30 on the outside. But internally, it’s, you know, it’s a hot mess. And that’s what that’s where I was, I was, you know, I was a hot mess. I’m 54 years old. So I started before it, you know, I’m a little overweight. Now. I’m working on that now.

Eddie Burnias 37:22
But, you know, I just I barely started gaining weight the past 10 years, I was normally around 171 80 I jumped up to 190 Mamba to 10 now. But it’s a you know, I come from, I’m an athlete, I grew up playing basketball and football and baseball my whole life. So I’ve always been active. But the older you get, the less active you become, it’s just natural, and there’s nothing you can do about it. You can’t run as fast as you can, and you can’t jump like before.

Eddie Burnias 37:59
So it’s gotten to the point where now I just getting out and walking, you know it. I preach this to everyone. I mean, being sedentary is the worst thing you can do to yourself, to your psyche to those around you if you care, you know do for them. Because they’re depending on you know. So I mean, first it’s selfish not to start thinking about others like that, especially you if you love them, because

Bill Gasiamis 38:34
you’re depending on them, but they’re depending on you, but they want you around, and they don’t want to lose you early and for no reason. For somebody that’s preventable.

Bill Gasiamis 38:44
They don’t want to lose you, you know, I’m, I’m 50 this year, and my, in the last 10 years, I met that I’m at that stage where everybody who I grew up with when we were doing all the wrong things smoking drinking, all the people who continued to smoke and drink into their 40s and, and live an unhealthy life are all suffering now are all suffering heart attacks, of loss to friends in their 40s from heart attacks, or three, actually, three.

Bill Gasiamis 39:20
And more people are coming on board now that are having heart attacks. Who knew of other people in their circle the same age as us who had a heart attack 12 months ago and didn’t see that as a sign to do something about it? They were overweight, they weren’t eating well, they weren’t healthy, but it still wasn’t a sign to do something about it.

Bill Gasiamis 39:43
Yes. So strange, you know, to say to notice people I used to and now I see people that are like me who’s had a serious health condition and I compare myself and I say okay, there they came similar back right around two May they work a similar job to me. They have similar habits to me. They’re a similar age to me, and they’ve had this health condition that could be made.

Bill Gasiamis 40:11
I need to make sure that I’m doing the right things to avoid that I need to take what happened to them as a lesson and take action. Or do that now, but I didn’t do it earlier. Earlier when we were getting sick. I was like, what is gonna happen to me? It’s gonna Yeah, fortunately, happened to them.

Stroke prevention in California

Eddie Burnias 40:32
Yeah, exactly. When you have that Superman mentality where, you know, it’s like, yeah, they probably don’t eat correctly, or they, I don’t know, there’s always something that genetic on their side or something. You could always make excuses. There’s always something but you always do you know, it’s a it is going to happen.

Eddie Burnias 40:51
In May, you’re just, you know, you’re you’re buying time, is what it is. No one’s known Superman, no one’s untouchable. If it escaped, it’s gonna get you get your time, it’s your time. But if you can prevent, you know, you have to go to the doctor and incurring all these fees and bills and extra bills and stuff. You know, I, you got to me, you got to unselfish notch.

Bill Gasiamis 41:20
That’s the best way to go about it. Prevention is the best way. So yeah, you’re off work. Is that situation going to be resolved soon? Do? Do you know, when that’s going to?

Eddie Burnias 41:34
Yeah, I have a hearing for that. Next month on the fourth. See, this is all happening. So it’s like, I’m in the inception of everything. So you know, I’m, it’s great. But what I was gonna say is that it’s been a blessing for me that having a stroke has helped me. It’s allowed me to get closer to a family member, one of the most important, but it’s also allowed me to know I’m starting a support group.

Eddie Burnias 42:06
So I have I have, like two other friends that that they and I get together. That’s why I was at my friend’s house last night. And we get together and we, you know, well, now we’re talking about each other’s physical ailments and whatnot. Where before we would, we wouldn’t talk, we talked and watched a game or, drank or played poker or something. Now we’re getting no because it’s happening.

Eddie Burnias 42:31
I want my other buddy, he just, had, like you said, a heart attack. His was is, was a heart attack, I probably would, he would have told me what is similar to a heart attack. And they kept him in there for observation for two days. But yet again, he’s 15 years old, he and I grew up together, drinking, smoking, and doing what normal kids do.

Eddie Burnias 42:57
But there comes a time when you got to you got to stay and buckle down and not look at your physical ailments and take care of yourself. Take care of yourself for the future. We’re still here, especially here in California, where the cost of living is exorbitant. We work on it, we’re constantly worrying about money, you know, money that we have to have, you know, all the money in the world is not going to prevent you from having a stroke.

Eddie Burnias 43:26
And all the money in the world is not going to make you happy. Because I’ve gone I’ve been to that point, I begged I, you know, I made a million dollars a year, you know, for consecutive years. And I’m not bragging because that’s not what this is about. But it doesn’t make me any happier. You know, it’s not that money doesn’t solve everything. Money can help. But it’s not the end all be all. You know, because most

Bill Gasiamis 43:54
we’re wearing California are you in where our Bay Area? Okay, area. So in the Bay Area, you’ve started this particular support group. Are you Yeah, how are you finding people? What kind of people are you looking to find? There’ll be people listening here who are from the Bay Area, they might want to reach out.

Eddie Burnias 44:15
Yeah, so far, it’s like I said, it’s just, it’s just a couple of buddies and me who started meeting on Thursday night. And just just kind of to get them we’re starting to get the word out. We’re starting to make some pamphlets and get out my number I believe we have attached my numbers, you know, it’s available. And if anybody wants to talk or maybe you know, have questions, I’ll do my best to answer them.

Eddie Burnias 44:46
I’m not by any means a licensed physician or even an educated physician for that matter, but I do have a lot of experience between, you know, the people that I think experiences is the most. And the best education you can get. You know, somebody who’s done there has been there, done that, I would rather go, you know, and listen to them than somebody who’s learned from a book, you know not to get don’t get around that you don’t book learning is great.

Eddie Burnias 45:21
But if somebody’s had the experience hands-on first-time experience, I’d rather learn that. And that’s all it does. But like I said, when I had my stroke, I couldn’t find any information. It is so hard to find information regarding, you know, how to treat yourself or what you should eat.

Eddie Burnias 45:43
And then the doctors the word, my situation, I didn’t have the backing because I didn’t have any insurance at the time, then I didn’t know what I should do, or shouldn’t do, what I should eat, or what I shouldn’t eat. And that’s like your bookings you know, delves into that.

Eddie Burnias 46:03
And it, which is great. But I didn’t have that, you know, I’m barely getting it now. And I’m here to help people that, you know, before we even get to the point we gave you haven’t shown, let’s start with what you shouldn’t be eating, and we shouldn’t be. Because here in California, I mean, you’re from Australia, but here, you turn on the TV.

Eddie Burnias 46:26
Every commercial is fast. I mean, every commercial, it’s anything I’ve watched, I’ve watched television in Europe, and even UK and there’s no fast food, then they don’t even show fast food. Here every commercial is faster. You’re you’re getting a no. And during the United States, the food that they were being, you know, served is not good. It’s it would be it would be illegal in other parts of the world.

Eddie Burnias 46:59
But yet, we’re consuming this. And that, to me it is my mother, because that goes with everything that goes with, you know, that attributes high blood pressure, attributes to weight gain, attributes due to heart disease and cardiovascular disease.

Nutrition, food choices, and health

Bill Gasiamis 47:18
There’s a great book called Why We Get Sick. Okay, so for anyone listening. And it’s probably the best book for somebody who’s had a stroke to read about nutrition specifically. And when I read it, it was just solving. It was just explaining so many things. It’s by a gentleman called Benjamin Beekman Benjamin. And it’s available on Amazon and all those places, and probably you can get it from bookstores.

Bill Gasiamis 47:56
And it’s not a hard read, it’s a very easy read. It’s not a very thick book. But it just goes into so much detail about how one thing leads to another leads to another leads to another. It talks about how you get to experience high blood pressure how people get to become diabetic or how they get to have a heart attack.

Bill Gasiamis 48:23
And it’s all related to food. And one specific thing that he talks about is sugar, the amount of sugar that we consume, and why it’s important to decrease the amount of sugar as much as possible, how much of it we eat, and then how often we eat it. So Why We Get Sick is probably my first favorite nutrition book health book. And it’s really important to very it’s a

Eddie Burnias 48:59
I know, in your book, you mentioned like your pasta after you had your Shoku you know, the pasta wasn’t good for you, in itself in the era of food coma. Yeah. You know, and I feel you on that. Because my thing is not possible. Where I breathe, you know, we get the greasy meat, the tortillas, and all that.

Eddie Burnias 49:26
It’s and it’s you know, I as soon as I got out as soon as I was able to eat on my own, I wouldn’t got you know, the biggest burrito I can get. And man after I was I was out for two days, you know, and you you still feel healthy. You know, it’s it’s weird because you didn’t think I never thought about that before. You know, I would I would I would, you know, late nights. You know when I was younger, I’d go out late at night to kind of buy a taco truck.

Eddie Burnias 49:56
I don’t know if you are familiar with that out here but do I Find a taco truck and we’d be down tacos? You know? And that’s just leading to what you’re just saying. It’s a domino effect. And you know, I’m playing Domino’s with my life and I don’t want to do that, you know, but you don’t know any better.

Bill Gasiamis 50:14
I spent some time in LA, in 2000. And okay. And men’s house. I was in heaven in a way, because it’s not food that we can get. We can’t get Mexican food a lot in Australia. Although now there’s a Mexican taco place everywhere. It’s really popular. But I mean, we’ve seen a really big boom, but back in 2013, we hadn’t seen it.

Bill Gasiamis 50:39
You just buy the cheap Mexican type of food from the supermarket you bring it home and it doesn’t seem thing. But But I know what you mean about the taco stands the everywhere little shops, little windows in walls.

Eddie Burnias 50:56
So it’s like, you were where I’m from, we can get it anytime, any time of the day, any time of the night. You want to get a taco. But it’s a greasy taco, which you know, is that and then there’s different types of taco but it’s, it’s that well, we shouldn’t be doing it. And I think in school, this shouldn’t be happening with the kids is teaching them young. You know, Hey, man, you stay away from, you know, it’s okay.

Eddie Burnias 51:21
It’s okay to eat in moderation. But don’t overindulge. Don’t, don’t go in to have, you know, have one soda, if you’re gonna have a soda, don’t go have a six-pack. When you get older, you know, don’t go have 612 12 beers, and then go out and have tacos and greasy burgers at three o’clock in the morning regularly. Because that’s not nutritionists. That’s not good.

High blood pressure and stroke challenges

Bill Gasiamis 51:48
Do you have children?

Eddie Burnias 51:50
Yes, I do. Yes. How old are they there they’re grown, my boys are grown. My, my oldest son is 32. My youngest is 27. So there I have three of them. And my other ones in 1,000,029. But they’re, you know, I’m on them now. I wasn’t before you know, because they’re big, strong kids or you’re like I Oh, you know, I was when they were I was very you know, they’re all you’re benching 340 pounds. You know, and to me that’s how I grew up.

Eddie Burnias 52:25
I thought that was that’s how you’re strong. You’re strong you’re strong guy. But doesn’t matter how much cool you can live man. If you’re not taking care of your inner inner body and your inner soul. It’s not You’re not strong you’re not there’s no strong, there’s no amount of weight that’s going to give you is going to help you when it comes to subconscious.

Bill Gasiamis 52:46
Strengthen muscles comes with many, you know helps you with some things but there’s very you have to strengthen your character you have to have strength in your Exactly. In your emotional state, you have to have all sorts of different strengths.

Bill Gasiamis 53:03
And that external muscle look is kind of good for meeting the right girl or Yeah, showing that you’re good, good genes and you’ve got good quality reproductive organs and all that kind of stuff, but and it helps to keep you fit and well it does. It’s really important. But it’s not the only one we need to broaden out.

Eddie Burnias 53:30
And eventually, all that fades like everything else in life. It fades because I was a big man pretty I was a pretty man when I was a young kid. You know? Look at me now. I’m not as pretty I’m still pretty but that was you right? Yeah, but

Bill Gasiamis 53:50
um, but what was the hardest thing about stroke for you? So far? What do you think’s the hardest thing so far?

Eddie Burnias 53:55
The hardest thing for me is number one is finding information on how to know, about stroke and stroke itself what physically and mentally happened. That’s that was the hardest that is the hardest thing. Because I’m like I told you I still don’t know what type of talk I’ve had.

Eddie Burnias 54:16
I was barely told this by my physician because I barely got my primary care in order. But information number one, it’s hard to because there’s nothing there’s so lack of information out there that can help people prevent themselves from being in a situation like mine. That it’s it’s it’s almost criminal. It is because if you know to prevent someone from hurting themselves, by all means, man, let’s get it out there.

Eddie Burnias 54:52
You know, holding it back is not helping anybody or anything. But yeah, just getting the information is hard It was the hardest thing. The second thing is, the fact that you’re changing, you change. It’s like a light switch like I’m a different person. You know, I can feel it myself. I’m not as why, like I said, I’m more vocal, I am more emotional. I know that comes along with the stroke that, you know, the motions.

Eddie Burnias 55:25
Like I was like, read about we, you know how you would cry at anything, not in the same way. The other day, I was watching a movie and I was always crying, like, like a 12-year-old little girl. And my wife comes in and she’s like, What are you doing? And I’m all Forrest Gump man, Hey, Jenny, you know, she’s leaving him. So it’s changed and it changes everything. But it’s, you know, there’s, there’s good points, but you know, but it’s hard.

Eddie Burnias 55:56
This is an easy getting up and walking. The first week or two, when I started having, you know, you have to do it. But when I started doing it, it wasn’t easy. Because I could, you know, you I would walk but I would get a sore bath. My body would always have, it feels like you’re half of my body’s working and the other one isn’t. So you have to focus, where before you can just walk without thinking. But now it’s like, I gotta focus.

Eddie Burnias 56:30
Even to this day, if I you know, I can’t run that’s in that so much want to run that’s, that’s my goal is I want to be able to run, I can set my job. But I gotta focus on where I’m putting my foot because if I’m not, it just goes in a diary. It just does what it does. I can’t control it. I have a feeling on my arm. But on the bottom of my right leg, it’s like, you can pick me and I won’t feel it, you can hit me with a stick. And it’s like a mountain. I don’t like a little brush.

Eddie Burnias 57:06
But it’s like, you know, I have to focus on things now that I’ve never thought of before. Before it was just running was, you know, you run that walking, but now it’s like you got this, I can think of the steps I’m taking if I’m walking up a hill, or the pavement is uneven, I have to calculate that if I don’t have like a normal strip.

Eddie Burnias 57:29
It’s like when you’re walking in you forget to call on on the rug. Well, that’s happened quite a bit with you know, because I’m not, you know, I’m thinking that I’m better. And I’m thinking okay, here, I’m going in I walk, I’m walking on uneven pavement, but my mind is not registering it because I don’t feel on the right side, like I did before, you know, before you could feel it, or you can even see the heel coming.

Eddie Burnias 57:53
But you don’t have you don’t see a protrusion coming out of the concrete or whatnot. And it’s, it’s a process. So now you have to be aware of everything about your surroundings, where you’re going what you’re doing before that’s something you just don’t take into consideration, and that takes a lot more.

Stroke recovery with a survivor and expert insights

Bill Gasiamis 58:15
That takes a lot more to pay attention and do the walking and paying attention at the same time. What stroke taught you?

Eddie Burnias 58:26
So far, because I’m so new to where it’s taught me that, you know, life is shorter than we would think. And what do you do with it if it is hugely important? You know, all the money in the world, all the material things don’t mean anything. It’s it’s what you do to get emotional. But yeah, it’s what you do you know, everybody has a gift. And, and I can use it.

Bill Gasiamis 59:09
That’s important. So that’s leading to my next question, which is what do you want to tell other people who have had a stroke and listening to do I just started their journey? Or maybe they’re a few years into their journey? What do you want to tell them?

Eddie Burnias 59:26
That they’re not alone? That there are others out there like us and I know there are people that get like, Why me? Why my attitude? And I don’t want to be here. That’s not the answer. There’s someone out there for you and there’s people that will listen.

Bill Gasiamis 59:57
Reach out for help.

Eddie Burnias 59:58
You have to excuse me, I’m not used to getting emotional like this

Bill Gasiamis 1:00:04
It’s new. I know, I’ve been there. It’s good that you’re allowing yourself to be that way, man, it’s understandable, it’s uncomfortable, and it will get better. It’s also going to be okay that it’s days a little bit as well that you’re going to be a little bit emotional. It’s really important, I think, for anybody but for men to be emotional.

Bill Gasiamis 1:00:32
And you’re gonna want to think it does it permits other men in your life to be emotional as well. Like, I cry in front of the kids all the time now and my wife and my kids are 27 and 23. So they have an example of how you can be vulnerable, how you can cry if you need to cry, and how if something saddens you it’s okay to express it and to be saddened by it. And not to you don’t need to put a brave face on all the time.

Eddie Burnias 1:01:07
Like I was saying, My son is 32 years old. I’m 54 he barely saw me cry, for the first time. You know, that’s yeah, this whole situation, got us closer, it has opened doors that I never thought, you know, that probably would have never been opened before. You know, I’ll be honest with you, I wouldn’t have I wouldn’t have been as vocal before.

Eddie Burnias 1:01:37
My kids, you know, especially boys are just like, before, you know, like I’ve gotten, you know, they scrape themselves, I don’t cry, you know, you’re not bleeding, you’re fine. You know, that type of attitude. And it’s, and now I have grandchildren. And if I don’t want to, I don’t want that same attitude. We need to change.

Bill Gasiamis 1:01:58
Yeah, I know, you’re looking after your health and you’re making sure that you’re taking your medication.

Eddie Burnias 1:02:03
Yeah, definitely. Definitely. Am, with people like yourself, help with your book, and your podcast. You know, this is an ongoing journey, and when I’m glad to be on, and I thank you for your help.

Bill Gasiamis 1:02:20
That’s my pleasure. Mike, thank you so much for being on the podcast. Thank you. Thanks for joining us on today’s episode, get a copy of my book by going to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.

Bill Gasiamis 1:02:44
For everyone who has already left an amazing review, be it on the podcast app that you listen to. You have commented on a YouTube video or you have left a book review. It means the world to me, that podcasts, books, and authors thrive because of reviews. And when you leave a review, you’re also helping others in need of this type of content to find it easier. And that is making a massive difference in their recovery.

Bill Gasiamis 1:03:14
If you haven’t left a review and would like to do so, just go to your favorite podcast app, leave a five-star review, and a few words about what the show means to you. If you’re watching on YouTube, do comment below the video I love receiving comments I respond to as many comments as I possibly can. At the moment I’m responding to all comments, so I would love to hear from you.

Bill Gasiamis 1:03:36
Subscribe to the show on the platform of your choice. If you’re on YouTube hit the notification bell so you can be notified of new episodes. If you are a stroke survivor with a story to share about your experience, come and join me on the show. You do not have to plan for them all you need to do to qualify as a stroke survivor. And you want to share your story so that you and other people can go about their recovery a little bit better.

Bill Gasiamis 1:04:03
If you are a researcher who wants to share the findings of a recent study or you’re looking to recruit people into studies, you may also wish to reach out and be a guest on the show. If you have a commercial product that you would love to promote on the podcast that is related to helping stroke survivors. You can also join me for a sponsored episode of the show.

Bill Gasiamis 1:04:23
Just go to recoveryaftershow.com/contact Fill out the form explaining which category you belong to and a little bit about yourself and your story. And I will send you some more details of how we can connect via Zoom. Thanks again for being here and listening. I do deeply appreciate you. See you in the next episode.

Intro 1:04:43
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. 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 protocols discussed.

Intro 1:05:00
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis 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.

Intro 1:05:23
The information is general and may not suit 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 1:05:30
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 000 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 1:05:30
While we aim to provide current quality information in our content. We did 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 the 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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Hemorrhagic Stroke Recovery: A Comprehensive Guide to Rehabilitation

Introduction

Navigating the path to recovery after a hemorrhagic stroke is a critical journey that requires precision and dedication. In this guide, we delve into the multifaceted aspects of hemorrhagic stroke recovery, providing a comprehensive resource for individuals seeking insights into the rehabilitation process.

Understanding Hemorrhagic Stroke Recovery

Recovering from a hemorrhagic stroke involves a multifaceted approach that addresses physical, cognitive, and emotional aspects. Each stage of recovery requires a tailored strategy, emphasizing the importance of personalized rehabilitation plans.

Early Rehabilitation Measures

Physical Therapy

In the initial stages of recovery, physical therapy plays a pivotal role. Therapeutic exercises are designed to improve motor skills, balance, and coordination. The focus is on rebuilding strength and mobility, setting a solid foundation for further progress.

Speech and Language Therapy

For individuals experiencing speech and language difficulties post-stroke, speech therapy becomes an integral component of early rehabilitation. Therapists work on enhancing communication skills and addressing swallowing issues, fostering a gradual return to normalcy.

Cognitive Rehabilitation

Memory and Cognitive Exercises

Hemorrhagic strokes can impact cognitive functions. Engaging in memory and cognitive exercises stimulates brain function, aiding in the restoration of cognitive abilities. This tailored approach contributes significantly to the recovery of mental acuity.

Emotional Support

Recognizing the emotional toll of stroke, rehabilitation programs incorporate mental health support. Psychologists and counselors play a vital role in helping individuals cope with the emotional challenges that often accompany the recovery process.

Long-Term Recovery Strategies

Adaptive Technologies

As recovery progresses, incorporating adaptive technologies can enhance independence. Devices and technologies designed to assist with daily activities empower individuals to regain control over their lives.

Continued Physical and Occupational Therapy

Maintaining a commitment to physical and occupational therapy beyond the initial stages is crucial. Regular sessions contribute to sustained progress, preventing regression and promoting long-term recovery.

Hemorrhagic Stroke Recovery Success Stories

Real-Life Testimonials

Sharing success stories of individuals who have triumphed over the challenges of hemorrhagic stroke recovery provides inspiration and encouragement. These narratives offer a glimpse into the possibilities of a fulfilling life post-stroke.

Conclusion

In conclusion, navigating the path to hemorrhagic stroke recovery requires a comprehensive and personalized approach. By addressing the physical, cognitive, and emotional aspects of rehabilitation, individuals can embark on a journey toward regaining independence and a fulfilling life. This guide stands as a beacon of support for those on the road to recovery, emphasizing the possibilities and triumphs that lie ahead.

The Interview

Luka Jelusic experienced a hemorrhagic stroke at age 46. Recovery has tested him in many ways and the experience has taught him a lot.

Highlights:

02:01 Introduction
03:18 What caused the hemorrhagic stroke
09:43 Hemorrhagic stroke symptoms
15:11 Dealing with mental fatigue
22:23 The neural superhighway in the brain
29:03 Managing family emotions after the stroke
38:23 Hand-brain connection and its impact on recovery
43:48 How handicraft helps with neuroplasticity
48:51 Lessons from the stroke
56:16 Time management

Transcript:

Bill Gasiamis 0:00
Hello, everyone. Thanks once again for tuning in to another episode of the Recovery after Stroke podcast. Before we get started, I want to address something with you, that you may have noticed that is different about the show when you are listening on your favorite podcast app.

Bill Gasiamis 0:16
Because I have not yet been able to secure an appropriate corporate sponsor. To help cover the costs of the show, I have decided to switch on a feature offered by my podcast host, and that is to run advertising on some episodes before during, and after the interview. I do hope that they are not too distracting, and I would love your feedback if they are particularly if they are inappropriate or annoying in any way.

Bill Gasiamis 0:44
I have avoided switching this feature on for as long as possible. But because I have covered the costs for the show since 2017. And with the rising costs of keeping this podcast going, I have no other choice. I will be looking at ways to raise more funds shortly, which might include a version of the show which is a subscription base for those who prefer not to listen to ads, or perhaps a Patreon page.

Bill Gasiamis 1:12
But I will look at many different options and implement the ones that are best for me. And hopefully, they will be the best ones for the listener as well. The book is a perfect way of supporting me and the show while getting amazing value. And you can grab a copy of that by going to recoveryafterstroke.com/book.

Bill Gasiamis 1:33
Funds raised by the book already are helping to pay for some of the costs of the show. But we are a long way from being cashflow positive. The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery where from a personal growth perspective, stroke transformed into one of those life experiences that was on reflection, filled with many opportunities for growth and personal transformation.

Introduction – Luka Jelusic

Bill Gasiamis 2:01
Grab your copy today. This is episode 293. And my guest today is on the second year of his path to recovery after a hemorrhagic stroke. Luka Jelusic welcome to the podcast.

Luka Jelusic 2:16
There you go. Thank you.

Bill Gasiamis 2:18
Thanks for being here. Tell me a little bit about what happened to you.

Luka Jelusic 2:23
Sure. So about two years ago, it was two years, just a few days ago, I had a hemorrhagic stroke, which affected me quite a bit. And actually after hearing your episode 267 with Angie Read I thought I might contact you and just share my experience with it because it was something with Angie’s story that I could relate to in the way that she kind of what I understood, tried to just push through and kind of storm through or like forced the way to kind of getting better and that’s often not how things work.

What caused the hemorrhagic stroke of Luka Jelusic

Bill Gasiamis 3:19
You’re an interesting guy. Okay, because you’re a woodworker, and woodwork is all precision and time and care. And you can’t force the project to get it to the end because if you force it, it looks terrible, and nobody’s going to buy it. You were 46 when you had a hemorrhagic stroke, what caused the bleeding?

Luka Jelusic 3:44
Ah, well, there is no clear the doctors suspected AVM but then after angiography they found no AVM so they said well basically it just happened. And I think I had like a reasonably healthy lifestyle when it comes to usual factors like I’m not a smoker I’m not a drinker. I’m not obese, I’m physically active, and so on.

Luka Jelusic 4:15
But I was in a very, very stressful period in my life. And I am not a doctor and the doctor said well stress can kind of contribute to but not cause a stroke. But I do know that I had a very very stressful period in my life three years before the stroke I divorced my wife and it was my older daughter who didn’t take that quite well so I was quite worried about her.

Luka Jelusic 4:50
I had a stressful situation at my job a particularly stressful situation at work that drag for a couple of months also I entered a new relationship, which is now very stable and very supportive and great, but at that time were also several challenges there. So it was kind of this situation where you know, all the important areas, like if at least one of them is kind of good, you have somewhere to turn, you know if your job is a mess, but your relationship works, well then, you know, you kind of have a safe way there, but I felt quite a bit cornered. And at that point, and I’m sure that had a lot to do.

Bill Gasiamis 5:35
How do you respond to stress? Do you go quiet? Do you get loud and obnoxious? How do you deal with it when you’re cornered? How do you respond?

Luka Jelusic 5:48
Ah, I think that I think I would say normally, like, kind of problem-solving is a part of my work. And I can tell you a bit about what I do as well. So thinking normally cope with these things fairly? Well, but at that point, I think I started to feel like, you know, I just did everything wrong. And I’m a complete failure, and I’m just making a mess all around me. And it was some kind of some kind of given up in that, like, I just, it just seemed like everything I did was wrong at that point.

Bill Gasiamis 6:32
And if you’ve done it, if you’ve had a couple of bad decisions, or things have gone wrong, or people are blaming you for things that have gone wrong, that may not even be your fault. You do tend to sort of say, Okay, well, maybe I’m going to stop doing anything, right now I’m going to stop making decisions, I’m going to stop taking action. And it seems like you’re withdrawing, it seems like you’re, you’re not taking responsibility.

Bill Gasiamis 6:58
But in fact, I’m describing myself now. But in fact, what’s happening is, sometimes when everything’s turned to shit, the best thing to do is do nothing, and just wait until the wave passes over you and goes away. And then you can sort of reassess, and then start making decisions again, and start retaking action, and start testing the waters to see how things are going to go.

Bill Gasiamis 7:25
Now, in a difficult situation with people and in their relationships, you have to allow the other person to go through their process as well, their phase of how they deal with the terrible time. And if the two with different ways of dealing with a terrible, terrible time clash, then it can be chaos. And I feel like what you’re describing is that you might have felt like you were you had no control over influencing the situation positively. And losing control was also absolutely making it worse.

Luka Jelusic 8:03
Absolutely. That’s the the way I felt at that moment, like, like, I just couldn’t figure out a way to like, make things better for me or other people around me. So I resonate with the way that you explain these things.

Bill Gasiamis 8:25
And especially what your children, when, when it’s your children, you want to make it better for them all the time, you want to make sure that they’re not hurting, that they’re comfortable that they understand that they can appreciate your point of view that they respect your decisions, or that they can forgive you if you’ve made the wrong decision.

Bill Gasiamis 8:44
And children just don’t play that game. They have their way of dealing with stuff and it might not be correct, because they may not also have the skills to correctly approach something that’s bothering them. But it’s the wrong time to charge both of them as well, isn’t it? I mean, it’s impossible. Yeah,

Luka Jelusic 9:06
absolutely. I mean, it’s at some point, you also when it relates to children, that tendrils do other things as well, like you understand that you do live kind of in the long run, like you’re gonna live from today from today to tomorrow. So there’s a lot of learnings that happening today that are very useful at some later point in life. So often things are not what they seem in the moment, but you have to get there yourself, right? You have to kind of figure it out for yourself in a way.

Hemorrhagic stroke symptoms

Bill Gasiamis 9:43
And then when all this stuff is happening, it seems like the bleeding in the brain is also a circuit breaker to all this stuff that happened personally. How did you first realize that there was something wrong? Did you get symptoms? What was it like?

Luka Jelusic 10:04
Yeah, yeah, I did. So in the days before the stroke, I was extremely tense. Just like there was some kind of tension that I felt in my body and some kind of spasms, which were not like the usual thing for me. And then it happened actually, when I was in the shower, which I heard is not completely uncommon. If you’re in a long, warm shower, and if you have previously been tense, that can kind of cause a sudden change in your, blood temperature, pressure, and stuff.

Luka Jelusic 10:51
So I just felt that I almost fell in the shower. And I noticed that, like, my right leg doesn’t hold me. And then I tried to grab myself and my right, arms didn’t work. And I thought, Alright, there’s something weird going on. But there was nothing with my vision. And you don’t know much about stroke unless your doctor or your stroke survivor.

Luka Jelusic 11:20
But I thought, Okay, since like I see, on both my eyes, it’s probably not a stroke, it’s maybe something with circulation, whatever. So yeah, my partner took me to a local, small hospital and they said, Well, you probably had a small stroke, it’s probably not too terrible. But you need to go to a bigger hospital and get checked. And then then it came to a bigger hospital.

Luka Jelusic 11:49
And then they started doing tests. And then they said, Yeah, you had a, you had bleeding in your brain. And we’ll kind of keep monitoring you and see what’s next. And then at some point, they said it stopped. So there’s no like, further danger. And they, they they were kind of considering surgery, but they then decided not to do anything. And, and there was that.

Luka Jelusic 12:19
And then what happened was that I think it was like the second day I was in the hospital, I got sick with COVID and that didn’t help. Thanks. Because what I heard from a doctor is that it’s not a very scientific explanation, but I guess it kind of makes sense as COVID hits you where you’re weak.

Luka Jelusic 12:44
And I just had a stroke. So that probably made the fatigue worse than if it was just from the stroke, because that’s the thing that I struggled most with fatigue brain fog again, and confusion.

Bill Gasiamis 13:04
How bad is fatigue how much energy did you have to do things for say, the day?

Luka Jelusic 13:12
Well, I started initially, it was good, quite difficult. And actually, when I started now and then getting a good day, when I would feel kind of normal, almost normal. It was only then that I realized how extremely tired I was all the other time. So it was this kind of high point that made me realize, yeah, that that I am very different in the other times, so I spent three months of work.

Luka Jelusic 13:49
And then and then went back to work. And that was quite difficult. So I work primarily as a teacher at the university, I teach design and craft at two different schools. And what is kind of a big part of my work is so-called design-build projects or community participatory design-build projects.

Luka Jelusic 14:12
So I take a group of students it can be like 15 or 20 students somewhere to some kind of community, it can be like a small rural community or a hospital or something like that. We stay there for a month. And we design and build some kind of space for them. So it can be like an outdoor community garden or like an outdoor living room or something like that.

Luka Jelusic 14:38
And there’s a beautiful project. It’s a very meaningful thing to do. But it’s also extremely intense, very kind of engaged with people with decision-making at many different levels, and so on. So that was the first thing I did after I returned to work. And that was quite quite challenging. I mean, I had help from colleagues as well. But it was quite a push to do that.

Hemorrhagic stroke recovery and mental fatigue

Bill Gasiamis 15:12
Were you struggling with was it being getting clear information in knowing what to do? Was it in telling people? What steps to take? What are you struggling with the most?

Luka Jelusic 15:25
I think the most difficult thing is that intense social contracts are one of the things that wear me out the most. So, if I have like, whatever manual workshop task to do on my own, that’s great. That’s I don’t have a problem with that. But intense social contact and intense settings with many people, airports, train stations, and something like that.

Luka Jelusic 15:54
It’s like, it just sucks out the energy off me immediately, and computer work is kind of similar. But since the essence of these projects is kind of matching people and work desks and stuff, then just struggled with fatigue a lot in that.

Intro 16:17
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 16:42
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.

Intro 17:01
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. Download the guide. It’s free.

Bill Gasiamis 17:21
Yeah, very common. It’s exactly what I suffered from other large crowds. So going to sports events was very difficult for me going to a noisy event where there were a lot of people at a bar, for example, and then the lighting and then the noise and then was just impossible. And then also finding a way to go back to work. I did some work in an office for about three years to try and get back on my feet.

Bill Gasiamis 17:58
I remember the first six months were terrible, I had to get anything done. And I was constantly fatigued. I would even leave and go into the car and have 10 minutes of quiet time or meditations or more to try and sleep just so I could recharge and come back and do the rest of the day. It was extremely difficult. And I drove an hour to work and an hour home. It was just such a massive day I was wiped out.

Bill Gasiamis 18:25
But what I found over the three years by the time it got to the last few months before I left the place, I was able to sit in front of a computer for eight hours and do some work, and participate in those conversations. I didn’t need to take rest breaks, even though I would be quite fatigued and exhausted at the end of it, but didn’t need to do what I was doing at the beginning of the job.

Bill Gasiamis 18:51
So it improves. But yeah, it does take some time. The hardest part for me was other people around me not appreciating what I was going through how did you find dealing with other people who you’re working with? And how did they react and respond to you?

Luka Jelusic 19:12
Well, I have a very supportive partner, which helps me a lot in this especially since like, I don’t know if you struggle with that, but it’s gonna it was it took me quite a while to learn who I am right now and what are the things that wear me out and then what are the things that are that I should avoid and so on.

Luka Jelusic 19:39
But at work initially, I also felt just like you described like I didn’t look it’s just hard for people to understand. Like you kind of just expect automatically for someone to understand what stroke is about and all that. I mean that I guess that’s why you’re doing what you’re doing.

Bill Gasiamis 19:59
We don’t want them to ever really understand, we don’t want them to know.

Luka Jelusic 20:07
Like, for real yeah, exactly. So I think that was the case initially at my workplace. Like, it wasn’t like, it didn’t come with a lot of, oh, maybe support or understanding. But I think it is way better right now. And I had just one month ago, a kind of a milestone, or like a breakthrough moment after a visit to a specialist doctor who had a lot of experience with strokes, and all sorts of neurological stuff.

Luka Jelusic 20:49
So after I like, kind of just tried to push through and kind of work my way through the recovery and all that, and that didn’t really, it just like it just started getting worse, also, so the, like, the memory issues, and fatigue, and all these things that get it, I had a feeling doesn’t prove, but it’s on the contrary, is getting worse.

Luka Jelusic 21:15
So then in October, I had to take like a 50% sick leave. Which helped me a lot, because I could balance work and rest way better. But it was a month ago that I had talked with specialists who for the first time explained, like the specific nature of the stroke that I had. Because I think one big issue for my recovery was that I kept hearing from doctors like, Oh, you have like a small bleeding so like, it’s not a big deal.

Luka Jelusic 21:54
And fair enough, but I just didn’t understand like, why am I so tired? And why do I struggle so much, and I kind of kept beating myself up, like, I should be better and you know, come on, just get your ass out of bed and go out and do your things and all that. And, then for some time, you can sort of take it like, alright, it takes some time to recover and all that but at some point, and it just, you understand you’re hitting your head against the wall.

The neural superhighway in the brain

Luka Jelusic 22:23
And it was this doctor who said you had a small bleeding that’s correct. But you had at a very particular point in your brain. That’s a part which is called an internal capsule, which he called the neural superhighway. So it’s a kind of spot where old nerves from your body and the spinal cord pass through to the process in parts of the brain, and the other way around.

Luka Jelusic 22:51
So he said, If you had a real job in a factory, you wouldn’t have like, you wouldn’t feel a big difference from your life before. But we did executive function, like the planning tasks and the multi, multi-level decision making and all those things that are affected a lot. And that’s why you have the consequences that you have. So even a small injury, to that part of the brain can have very serious consequences.

Luka Jelusic 23:25
And he said I had a patient that had a stroke at the same spot as you years ago, but a bigger bleeding. And he said things were not funny at all. Honestly, he said you can consider yourself extremely lucky. So that was kind of like a big, like, aha moment for me because it is like almost like Okay, so like what’s happening? Like, it is kind of real, you know? So I think that explanation for the doctor, and then the same doctor called my boss at the university and explained to him what was going on.

Luka Jelusic 24:07
So from that moment on, I also had quite a different, understanding at my workplace of what was going on what a task I could do easily, and what tasks I should avoid. At least in the immediate future. So it was quite an important thing for me in terms of accepting what happened.

Luka Jelusic 24:33
You know, you read a lot about that, like the first step of recovery is actually to truly accept what happened. And I think for me, that was that moment and that kind of explanation from that doctor. Like against the thing that I’ve been hearing before, like, oh, we only had small bleeding so should be alright.

Bill Gasiamis 24:56
Yeah, it’s place. They tried to keep you calm and not too concerned about it, etc. But they kind of playing it down. As far as I’m concerned, you hear about people having an ischemic, transient ischemic attack a TIA, and they call it a mini-stroke. And I think it’s the worst way to describe it like it’s a stroke doesn’t matter if it’s Mini minor or major, it’s a problem in your brain, and you have to take it seriously.

Bill Gasiamis 25:23
And I think it makes people not take the situation seriously, sometimes. I love the fact that you got this doctor to tell you specifically what impacted what part of the brain was impacted. That’s why I have my FREE download of the seven questions to ask your doctor about your stroke, people go to the recovery after stroke.com. Download it for free.

Bill Gasiamis 25:49
And then what they get is they get questions that they can go, a form that they can take to their doctor, and it has questions. And one of the questions is, Where specifically in my head is the damage? And what does that part of my brain do? And what hopefully that does is create a conversation that’s very different from you had a stroke, you should go home and you should rest.

Bill Gasiamis 26:14
It’s specific and the caregivers and the family members who are there, then specifically know what you’re struggling with and why you’re struggling with it rather than guessing. When I went to the hospital, I was told I had a bleed in the brain, it was near the cerebellum. But that didn’t tell me what that impact was and what I should expect to be struggling with.

Bill Gasiamis 26:40
So everything that was happening, my wife and I were looking at each other going, is this normal? Is this what I’m supposed to be feeling? Am I having another bleed, we had no idea. And it made it uncertain. So we kept going back to the doctor, every time I’ve been to the hospital, every time something weird happened, or if I felt strange, who would strain in the hospital?

Bill Gasiamis 27:01
Because nobody explained anything to us. Most of the time we went to the hospital was a false alarm. But another two times the AVM bled again and wrote that up having brain surgery.

Bill Gasiamis 27:15
So what I would suggest is for people to get as much information as they can, if they’re not certain what’s happening to them after the initial incident, and if something feels weird, definitely go and get a second opinion and go to the doctor. Don’t wonder don’t don’t guess. But don’t play it down. It’s a serious issue with TIA. A small bleed in the brain is a bleed in the brain.

Luka Jelusic 27:40
Yeah, I think that’s extremely important. Because it can it can be like the symptoms can be so different depending on where it happens. Knowing what are the kind of typical things for the spot where it happens, can be so helpful for the recovery. One thing that I read, because that later was that the doctor explained to me that I didn’t know when reading about it with that specific term, the internal capsule stroke, and like, it fits.

Luka Jelusic 28:15
Like silly little things like decision making is one thing that I noticed I have a very hard time making decisions. It can be like stupid decisions, but it’s like I just kind of make up my mind. And I feel like an idiot like wait a minute, it’s like, whatever situation starts a big deal. Just make up your mind, but I can’t. And that’s one of the symptoms of a stroke in that area. It’s quite helpful to just know that.

Bill Gasiamis 28:46
In that moment when you can make decisions, even simple ones, do you recruit other people to help you make the decision?

Luka Jelusic 28:53
Yeah if I can. I tried to ask for help if I could, depending on what is the situation.

Managing family emotions after the stroke

Bill Gasiamis 29:04
So you’re going through a difficult family time with your former partner and your daughter and you had the bleed, how did that impact them?

Luka Jelusic 29:16
Well on the one hand and again, I’m not sure if that’s the right thing to do but I think I really kind of desperately want to stay functioning kind of normally like to continue providing whatever not only financially ways but as well but also in all the other ways. It’s just like to kind of continue with the normal life as much as possible.

Luka Jelusic 29:55
And I think for the large part I managed but at quite a big cost in terms of fatigue, and also, in terms of like the cost of my private life, because if you’re not the end of the week comes and you’re completely, you know, you’re a cucumber on a couch, so much of life, right. So I think that I guess that answers kind of the question because like, ultimately that does slow. Getting better in the long term, like pushing through and trying to do more than you can.

Bill Gasiamis 30:38
So are you trying to just pretend that you were, as you were before the stroke? Was that to try and make your daughter feel okay about the situation that was happening to you, because I kind of, was managing people’s emotions a lot? So I found that leading up to surgery. I was cool as a cucumber, I pretended as well, even when I was worried that I wasn’t worried about the surgery, because I knew everyone else around me was shitting themselves.

Bill Gasiamis 31:15
They were fearful about what was about to come. And to try and keep them calm. I pretended in certain situations that I was calmer than I was. Even though it was good for the surgery. I was trying to always keep other people relaxed, and calm. I was playing it down. Did you find yourself doing it? To sort of try? Definitely.

Luka Jelusic 31:39
Not with my not with my not with my partner? I think but with her, I was gonna, yeah. Not acting in or not playing. Like, I’m better than than I am. But in many other situations. And also, like, I know that in, in social situations in work. And all like, once I started getting tired, then most of the energy was spent on trying to look normal. And that says something stupid or not, you know, which which is, which is, which doesn’t make sense at all, I should just kind of bailout and take a rest or whatever, leave.

Bill Gasiamis 32:26
It’s so weird. But it’s cool and I hear it a lot. People just want to just go back to the status quo, and then they can’t, and then the gig is up, and they have to fall in a heap and hit rock bottom. And then they realize that they need to make some dramatic changes. And then people go, Oh, my gosh, I didn’t realize you were that unwell.

Luka Jelusic 32:52
Yeah. But there’s something with, I heard you say that in one of the interviews, like, ultimately, you don’t want to do things that got you in trouble in the first place. But I guess that’s what a lot of us just do until we come to a certain point, which then I guess marks a turning point in recovery as well.

Luka Jelusic 33:16
And that’s a point of acceptance of what happened and acceptance that you have to change things. And did you have to just go with what your body’s telling you and all that? But until that point, I mean, I hear in light, like a lot of stories that your podcast and other things that I read that people just tried to kind of, yeah, just get back to the former self as soon as possible.

Bill Gasiamis 33:41
It’s the worst one to go to because that’s the one that caused the problems. It’s the person who ended the situation. Like you. I was contributing to the bleeding occurring, by smoking, drinking, and working too much. Not resting enough not having any me time. I was angry. You know, I was blaming everybody for my problems. There was so much negativity in so many issues that I was creating that I was creating the perfect storm.

Bill Gasiamis 34:20
And this thing in my head just happened to be there. And I made the conditions perfect for it to go I’ve had enough and I’m gonna pop. And it was kind of like it’s like a circuit breaker. It’s what I mentioned earlier to you like for me, it was a circuit breaker. It was something that I look on now and think if it wasn’t for that I may have succumbed to a different condition than what I had a heart attack.

Bill Gasiamis 34:48
Who knows you know, the smoking and the drinking water have contributed to something positive. So I see it as like this weird blessing in disguise Yeah, it was hard, though. I’m not saying it’s easy. And I’m not promoting stroke it was button on. I’m now 12 years beyond the first bleed. And I look back at it and it wasn’t for that maybe I would have suffered something more serious.

Luka Jelusic 35:19
Yeah, I understand. And I’m definitely, especially lately trying to see the good side of it, like the way that it’s forcing me to change my life. There’s there’s a lot of good things about it. Now. And there’s also, you know, I don’t know if you saw it. There’s a short documentary about Ram Dass, on Netflix, who had a stroke he’s some kind of spiritual leader. So he had a stroke late in his life. And he says, this thing, which is a great sentence like, I don’t wish you stroke. But I wish you the grace that stroke brings, which was quite profound.

Bill Gasiamis 36:08
The best lessons I’ve ever had to learn were profound, I can’t, I couldn’t have learned them any other way. And it’s it’s disappointing that I had to have a stroke to learn them. But I’m not sure if there was a way for me to learn them. I’m not sure how else I could have learned the lessons that they brought that abroad. It’s really weird. So were you left with any deficits, other than the neurological challenges, were you left with physical deficits in your body?

Luka Jelusic 36:41
My right side is not as strong as it used to be. So I have good dexterity in my right hand. But there’s a difference. So especially when I’m when I’m tired, then it’s kind of kind of clumsy with it. But, but nothing else. Nothing apart from that. And also, I think, I think there’s a number when it comes to like, again, it’s something that ng read mentioned in your podcasts, like working with your hands is something quite important for the recovery.

Luka Jelusic 37:30
I am teaching designed to craft with my students. So there’s like this premise of the school, both schools that I work with is that design is not complete without the act of making. So wherever you design, you need to make it to understand the implications of it. So I’m both teaching design and design skills, as well as different making skills.

Luka Jelusic 37:56
But I noticed that that’s something like since I could do less off kind of executive functioning than I started to turn both in the way I teach, but also in my hobbies and stuff, kind of coming back to the workshop and going back to making in different ways. But it’s extremely beneficial for me.

Bill Gasiamis 38:23
I love that.

Hand-brain connection and its impact on hemorrhagic stroke recovery

Luka Jelusic 38:23
When I was younger, I was fiddling a lot with old cars. And then a little less than a year ago, I bought after quite a while I like I bought an old car, and 1968 car that needed a lot of work and fiddling with that thing for an hour or two per day. It does me good. Both in terms of kind of the like just the physical training of dexterity. There’s something else that happens with that kind of work.

Luka Jelusic 39:04
And there’s an excellent book, I don’t know if you know about it, it’s called The Hand by Frank R. Wilson. It’s called the full title is like the hand and how its US shapes the brain and something else in human culture. So something like that. But in any case, Frank Wilson is a neurologist to kind of brought forth this hypothesis, that brain and hand evolved together.

Luka Jelusic 39:39
It was the evolution of our hand that affected the change in the developmental forebrain that ultimately enabled the appearance of language. So kind of the basic premise is that the hand and brain are like, intrinsically connected in very beautiful and sometimes unexpected ways. So there’s something in that, like dealing with music, with crafts with these kinds of things I find extremely beneficial for my recovery. And I heard that from other people as well.

Bill Gasiamis 40:16
Yeah, well, I’m from a Greek background. So most of our talking is done with our hands. If you’re not moving your hands everywhere, you’re not communicating, you know what I mean? And I struggle to be on the podcast and not use my hands. So I have to put them down. And because it’s not efficient, the podcast.

Bill Gasiamis 40:41
But when you think about what you said, like when I think about it, instinctively. You, there’s so much not in them so much that comes from the communication with hands like there is our gestures. Like, often, when somebody’s talking emotionally about emotional stuff, they’re pointing at their heart, you know, when they’re freaking out in their head, their hands are near their head, you know.

Bill Gasiamis 41:09
And when something has, when you’re gutted by something when something has happened, and you feel gutted. And you know, you’re struggling with what just happened, you know, people are clutching their stomachs with their hands, it has their hands have a very significant role in nonverbal communication, you do see people’s hands do all sorts of strange things.

Bill Gasiamis 41:34
And if you don’t listen to people, if you’re not listening to their words, and you’re just observing their hands, it’s amazing where their hands go and what they do. And if you think about what you said earlier about design, right, so there’s one thing to do design an object and create a 3D render. And to be able to visualize it at the top, and the bottom is a certain amount of skills, a certain part of your brain gets activated.

Bill Gasiamis 42:04
And you’re able to visualize that before you render, then you render it, then you see it, your visualizations come to life, but then to use your hands and to craft, the raw object, the raw piece of timber, and to fine-tune it and make it look, the way you intended is another next level of ability and skills and the hand has to play a role in every stage it has to play a role in the rendering has to play a role in the construction, it has to play a role in developing the form of the objects.

Bill Gasiamis 42:44
And you can see how if somebody only ever did design, it’s like what they say about architects and builders, you know, architects they’re fantastic. All they do is put drawings on paper, but they’ve never built a house, what would they know about installing a window, for example, it’s kind of true, it’s that you miss a big piece of the process if you’re only involved in one step of the process.

Bill Gasiamis 43:14
And then the other step is done by somebody else. I think that designers and architects would be far better at their skill at their craft if they took a project from concept to result. Because then they’re able to understand where in the design, they need to alter to make the construction easier, for example, and vice versa.

How handicraft helps with neuroplasticity

Bill Gasiamis 43:48
So I feel like your job of say designing a space or putting something together and then being involved in the project is helping your recovery because Neuroplasticity has to happen in far more places in your brain than in somebody who just did the design work and then handed that project over.

Bill Gasiamis 44:11
I was telling a friend of mine whose daughter recently had a bleed in the brain. She had an AVM when she was 17. At the time, she was doing well now. But she was a diver. So she’s somebody who goes onto a board jumps up and then different heights, twists her body in the air, repositions at real lines, and then finds a way to land in the water to make the smallest splash possible.

Bill Gasiamis 44:43
When I was being told about the rapid pace of her recovery, I wasn’t surprised to hear that because she has far more neurons in her brain that are related to movement and how to achieve I have an outcome with her body than I do, for example, She’s 17, she’s got that advantage as well.

Bill Gasiamis 45:07
But she also has this additional skill. And even though she’s left with left-side deficits, numbness tingling, and proprioception issues, she still has all these other additional neurons that she can use to rewire the parts of her brain that were impacted. And to give her more ways to bring back things that will last, because there are just more pathways there already. Unlike me, I never dived in my life.

Bill Gasiamis 45:44
So I’m kind of sitting behind the eight ball. And this is the thing about exercise as well, where what you do with your hands on the car, I consider a form of exercise. It’s coordinating the brain, the hands, thinking, problem-solving, and decision-making, it’s doing it all, all at the same time.

Bill Gasiamis 46:03
It’s such, it’s like a sport, it’s like running around on a field and being physically fit. And then that’s why it’s so important to get into physical activity after a stroke. And it doesn’t matter what level of deficits you have, what you’re doing is you’re creating so much Neuroplasticity, so much potential for change and rewiring.

Luka Jelusic 46:27
Definitely and at the same time, it can be on a level that is manageable and not kind of overwhelming. But like I guess, for the right kind of brain injury and for the right kind of person that can be like really life-saving for the recovery.

Bill Gasiamis 46:48
Yeah, and I encourage it, and I love what this book suggests that the hand and what did you say the which part?

Luka Jelusic 47:03
So I read quite a while ago, I mean, I read because of my work and not because of a stroke. But he hypothesizes that it was the evolution of the actual thumb, not the hand is a hole, but the way that our thumb evolved, compared to other primates caused our brain to rewire, which ultimately enabled the appearance of language and other things, which makes us different than other primates. So you can kind of like twist that idea. And like possibly use your hands as a way to reclaim parts of your brain.

Bill Gasiamis 47:49
I’m reading the title on Amazon, I just found that on Amazon, and the title is The Hand: How Its Use Shapes The Brain, Language, and Human Culture. So how many years has it been now since the first bleed since bleed?

Bill Gasiamis 47:51
Two years.

Bill Gasiamis 47:54
And has the blood clot gone away from the blood that was in your head?

Luka Jelusic 48:20
I guess? Yeah, I had the angiography, like two months after the stroke, as I mentioned before, where they tried to see if there was AVM that caused it or something. And they said, Yeah, it’s like, it’s all good with that, there’s nothing more that we could do. So you should just kind of proceed with your whatever physiotherapy and stuff and like go on with your life.

Lessons from the hemorrhagic stroke recovery

Bill Gasiamis 48:51
Yeah, that’s a good place to get to. What has stroke taught you?

Luka Jelusic 49:04
I think definitely listening to my body or listening to my body or listening to myself, whichever way you want to put it in ways that I didn’t know how to do before and I’m still learning that big time. I remember when I was working with the physiotherapist I had quite an unusual and interesting person as a physiotherapist.

Luka Jelusic 49:31
So he told me, he gave me some exercises to do like in the gym, like walking in a straight line and whatever with support without support, one eye closed and stuff, but he told me you need to do things that are okay for you. That’s, that’s extremely important for you.

Luka Jelusic 49:54
Now you need to do what you’re comfortable with. As Alright, and then we’re doing this exercise and He tells me something, to do something where I almost fell. And he said, why did you do that? I said, you told me to say yeah, but I also told you that you need to do things that are good for you.

Luka Jelusic 50:18
And I remember that so many times, like, it doesn’t matter if he told me to, do something on the line. If that does work with me, it was such a simple, simple kind of trick to prove like you moron, like you just did something that’s not okay for you.

Luka Jelusic 50:36
And like you forgot it. So think that’s a big lesson to say stop and think, Is this okay for me? Now or not, and like you said, yourself, like, it’s kind of sad that it’s a stroke that has to teach you these things. But I guess there was no other way for that.

Bill Gasiamis 51:05
to happen, no other way. Very comfortable describing myself as a thickhead, I have to learn the hard way. And there’s no other way you can bring me to something gently and calmly and, and simply and it just doesn’t work. My brain doesn’t work like that. I have to get whacked over the head, so to speak. What was the hardest thing about a stroke for you?

Luka Jelusic 51:30
I think accepting the the new reality and accepting that life is not, you know, the life life and career and stuff. It’s not like a straight line or a straight path. And some things just happen in a way that you didn’t plan. Big time. Because, like about a year and a half, like roughly half a year ago, I was getting quite grim. Because the recovery just wasn’t going the way I kind of taught it.

Luka Jelusic 52:10
So it’s getting quite dark. In death and kind of, you know, just having these thoughts, alright, maybe I just won’t be able to do what I kind of really like to do professionally and in other ways. And you know, all these thoughts like, who’s gonna? Will I just stay alone will way have a job and I have a source of income? Will I have support from people? will it just be crippled that is not able to take care of himself and all these things? That can get quite tough.

Bill Gasiamis 52:51
Reasonable questions as well in the face of what has happened to you. They’re very reasonable questions, and your identities getting challenged, and your future is uncertain. And yeah, I mean, I think everybody who’s been in your situation has asked themselves the same questions.

Bill Gasiamis 53:09
And I found myself waking up in the middle of the night and going to dark places, you know, when everything’s quiet, and I’ve just gone to the toilet, and I need to go back to bed and I’m walking back to bed and then my brain just starts going everything shit, everything’s terrible. You’re never going to get through.

Luka Jelusic 53:31
The night is the worst man.

Bill Gasiamis 53:35
And I spoke to my psychologist about it and she told me there’s a specific time in the middle of the night it’s roughly between one and three in the morning or four in the morning. If you were in the middle of the night. It’s called the witching hour. The witching hour now I’ve heard of it before and I was like and what happens during the witching hours you guys dumbshit stuff that shouldn’t be thinking you start thinking and then you can cause a loop in a cycle it’s very common of the negativity.

Bill Gasiamis 54:08
And if you know about it, just tell yourself you’re woken up during the witching hour and you’re just playing the unnecessary loop in your head and you can just forget about it and go back to bed and then wake up in the morning and you’ll see things are different and that’s what I try to, I try and do that because my head never used to do that. That’s exactly

Luka Jelusic 54:35
That’s exactly what you described that hour and the certain kinds of thoughts that don’t normally appear during the daytime do appear that time and then they kind of mess up with you. But what I did find out is that that is extremely helpful, and I heard you talk about similar things. Are there good routines and good rhythms of things, and practices like meditation and journaling?

Luka Jelusic 55:10
And for me like, like, it’s extremely helpful for me to make a plan for every day, and then try to stick to it. And then if it works, it’s good. And then if I blow it, I kind of blow it, but it’s really good if I can stick to it, for example, not work more than two hours, in one go to work two hours, have a little break, then work more.

Luka Jelusic 55:40
And yeah, like doing a meditation every morning, journaling every morning, no screens in the evening, which was kind of difficult to stick to. But if I manage that, that helps me a lot. So kind of trying to develop good discipline around things that I know are helpful. That then also helps with having good sleep and not going to those dark places at night.

Time management

Bill Gasiamis 56:15
Yeah, I used to just be happy that I had enough energy to cook dinner for the family. When I was home alone. My wife was back at work and the children were at school, I would do nothing all day, just so that I had enough energy to go by the ingredients and cook dinner and make sure that we ate dinner together. That was it. And if I did that, I achieved my goals for the day, and I was happy.

Bill Gasiamis 56:48
And then as things started to improve, I found myself getting through some heavier days of work. So getting to the point where you know, that list, I made it a bit larger. And then by the time I got to three o’clock, I’d be wasted. And then there would be say, four or five or six things that are still on the to-do list. And I just knew they were not getting done.

Bill Gasiamis 57:15
That’s it under no circumstances, is it possible for me to sit down and do that, because if I do those things, I’m going to suffer for it tomorrow, or I’m going to not rest before bed, and I’m not going to get a good night’s sleep, and it’s going to be terrible. So I got good at feeling comfortable with saying, tomorrow’s another day, the list is still going to be there. I’ll just do it tomorrow. Instead of trying to get to the bottom of the never-ending list.

Bill Gasiamis 57:44
I mean, the list of tasks never ends. And it’s like, Alright, that’s it. We’re done. We’re done for today. And if somebody contacted me and said, for work, especially. And so what about this? What about they’ll be like, Yeah, can’t do it right now it has to happen. You have to wait.

Luka Jelusic 58:02
Exactly. But I think that was quite I assumed I was also quite learning for you at some point. But I know it was difficult for me because you know, at some point, you can have a feeling that you move through life because you don’t leave things for another day.

Luka Jelusic 58:19
But you do them, you do as much as you can you make good use of your time, and you do as much as you can in one day and not leave things for tomorrow. Because at some point, you just assume you have more or less unlimited sources of energy, especially when you’re young and all that. But then, after a stroke, it’s just a different distribution of resources.

Bill Gasiamis 58:47
And it depends on what the most important thing to you. So you can still allocate time to the most important things to help you move through time and achieve your outcomes. And it’s good at teaching you that that’s not that important. You don’t need to do that right now. And you can let that go.

Bill Gasiamis 59:05
And you could constructively use that time by doing nothing. For me, it was very constructive to do nothing, because that meant I rested, recharged my batteries felt better, and was able to interact with my family. That was all positive things. So doing nothing became very constructive. Very. You came a task that was useful to do, which I didn’t realize.

Luka Jelusic 59:37
Yeah, exactly. Yeah. This is a different kind of prioritization.

Bill Gasiamis 59:44
Less is more and that’s a good lesson to learn less is more especially when you have to use the energy in your battery efficiently and gently because you only get so many lines of battery for the day. Once they’re done, they’re done. That’s it. The next day is another day we’ll, we’ll reassess and go again. What would you like to tell other stroke survivors who are listening to this quite early on in their recovery, perhaps, or they’ve been going through for a little while? What’s your one piece of advice or encouragement that you’d like to give?

Luka Jelusic 1:00:29
Well, funnily enough, I heard that early on, and somehow, like, it just doesn’t get to you until it gets to you. But since my mom is a doctor, and she worked with some stroke patients in her practice, she said, you mustn’t get fixated on becoming who you were, before the stroke as soon as possible, but to understand that you can also be someone else and that’s okay.

Luka Jelusic 1:01:00
And I kind of understand that now. And although I heard it, I was told that right after the stroke, but it’s just a different thing, if you, you know, have kind of intellectual understanding of something or like if you understand something in your body and kind of in your bones. But I think that’s the most important thing. Like you don’t necessarily have to get back to who you were before. You were someone different. And that can be a beautiful thing.

Bill Gasiamis 1:01:33
Your essence is the same. But how you go about participating in the world or responding to how the world is, can evolve is an evolution? How would you describe it?

Luka Jelusic 1:01:40
Yeah, I’d say so. And you know, how the spiritual teachings tell you that letting go of things, or accepting what is is super important to move through life. I would say that. Once you take that in, that’s when a stroke can become the best thing that ever happened to you, like you say.

Bill Gasiamis 1:02:34
On that note, thank you so much for joining me on the podcast.

Luka Jelusic 1:02:38
Welcome, Bill. Thanks a lot for what you’re doing. I so immensely appreciate it. It extremely helped. It was extremely helpful to me on this journey to listen to many episodes of your podcast. I appreciate it immensely.

Bill Gasiamis 1:02:54
Thanks for joining us on today’s episode, get a copy of my book about stroke recovery from Amazon, or go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.

Bill Gasiamis 1:03:15
Thank you to all those who have already left the review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of content to find it easier, and that is making their stroke recovery just that little bit better. If you haven’t left a review and would like to the best way to do it is to go to iTunes or Spotify.

Bill Gasiamis 1:03:39
Leave a five-star review and a few words about what the show means to you. If you’re watching on YouTube, you already know that I love responding to comments on the YouTube interview. I appreciate it. If you like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share, come and join me on the show The interviews are not scripted, you do not have to plan for them.

Bill Gasiamis 1:04:09
All you need to do to qualify as a stroke survivor. If you have a commercial product that you would like to promote that is related to stroke survivors’ recovery there is also a path for you to join me on a sponsored episode of the show go to recoveryafterstroke.com/contact Fill out the form explaining briefly which category you belong to. And I’ll respond with more details on how we can connect by Zoom. Thanks again for being here listening, interacting, understanding appreciating I appreciate you see you on the next episode.

Intro 1:04:46
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