Recovery After Stroke

In 2009, while on a family vacation in Vietnam, Antonio Iannella, author of Saigon Siren: A Stroke Survivor’s Life-Changing Moment Abroad, experienced a life-threatening brain hemorrhage caused by an arteriovenous malformation (AVM). The experience was terrifying, as he struggled to communicate with foreign medical staff, faced language barriers, and navigated an unfamiliar healthcare system. But it was in these challenging conditions that Antonio’s life after the stroke truly began, shaping both his journey and the powerful story he would later share in his memoir.

Like many stroke survivors, Antonio’s life after the initial crisis became focused on rehabilitation. The road to recovery was long and full of unique obstacles many face in stroke rehabilitation. The stroke left him with several physical limitations, including challenges with mobility, vision, and coordination. Each day brought new struggles, but it also revealed small victories that came with persistence. For Antonio, even learning to sit up or move his right hand again felt like huge milestones in his recovery after the brain hemorrhage. These small victories not only marked progress but served as reminders that life after stroke can still be meaningful, even if it looks different from before.

One of the hardest parts of stroke recovery is the emotional journey. For Antonio, rethinking his life purpose and adapting to his limitations became essential. His love for music faced a significant setback due to physical limitations, but he didn’t give up. Antonio adapted, learning to compose and create music with one hand. This adaptation allowed him to find joy in his creative pursuits, a powerful example of how finding purpose can redefine life after stroke. His experiences, captured in Saigon Siren, provide insight into the resilience that many stroke survivors find along the way.

Emotional support is essential for stroke survivors, and Antonio’s journey underscores the importance of community. He found comfort and strength in connecting with other stroke survivors who understood the ups and downs of recovery. This sense of community helped him cope with the unique emotional challenges of life after a brain hemorrhage, providing valuable insights and strategies for overcoming day-to-day struggles. Through his book, Saigon Siren: Memoir of a Stroke Recovery, Antonio offers readers an inspiring account of his journey, from the shock of the stroke to the long, slow climb of recovery. Writing became a therapeutic outlet for him—a way to process emotions, reflect on his growth, and reach out to others who might feel alone on their own paths to recovery.

Antonio’s experience serves as a testament to the power of resilience. Life after a brain hemorrhage, like his, is often marked by a series of setbacks, adjustments, and personal growth. In learning to let go of old expectations and accept a new normal, Antonio gained a sense of peace by living in the moment and focusing on what brings him joy and purpose. His story in Saigon Siren is a powerful reminder to other survivors that life after stroke, while challenging, can also be rewarding. The journey of adapting and overcoming the hurdles of stroke recovery opens up new perspectives, strengths, and possibilities.

Antonio’s message to other stroke survivors is simple yet powerful: Don’t let setbacks define you. Life after stroke might look different, but it’s full of potential. Recovery after a stroke isn’t about returning to who you once were but about discovering who you can become. Finding purpose, whether through creativity, community involvement, or sharing your story, can bring new meaning to life after stroke. If you or a loved one is navigating the journey of life after stroke, remember that support is available. Connecting with other survivors, discovering local resources, and finding inspiration in stories like Saigon Siren can offer guidance and reassurance.

Antonio Iannella’s journey in Saigon Siren: A Stroke Survivor’s Life-Changing Moment Abroad highlights resilience, adaptability, and purpose. Despite the difficulties posed by his AVM and his journey back to health in a foreign country, he emerged with a new perspective on life. His experience serves as an inspiring example for stroke survivors everywhere, showing that life after a stroke can be a time of growth, creativity, and unexpected joy. For anyone on a similar path, Antonio’s story stands as a beacon of hope—a reminder that, while recovery after a brain hemorrhage may take time, there is always room for possibility and growth in life after a stroke.

Discover Antonio Iannella’s inspiring story of life after a stroke, overcoming adversity abroad, and finding new purpose.

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Highlights:

00:00 Introduction
02:57 Antonio’s Journey with the Stroke Foundation
04:31 Antonio’s Initial Stroke Experience
07:35 Adjusting to Life After Stroke
11:20 Family Dynamics and Personal Growth
17:51 Writing and Publishing the Book
28:28 The Stroke Experience and Recovery
37:28 Returning to Australia and Continuing Recovery
43:33 Finding Purpose and Joy in Life After Stroke
47:31 Advice for Other Stroke Survivors
54:00 Back To Driving After A Stroke
1:04:23 Life After Stroke And The Pseudobulbar Affect

Transcript:

Bill Gasiamis 0:00
Hello everybody, and welcome to episode 326 of the recovery after stroke podcast today, I’m honored to bring you the inspiring story of Antonio Ianella, a survivor of a brain hemorrhage that struck while he was traveling in Vietnam. In this episode, Antonio shares the challenges he faced recovering in a foreign country, overcoming language barriers and adapting to his new physical limitations.

Bill Gasiamis 0:29
His story reveals the power of resilience, adaptability and finding purpose in life after stroke, before we jump into Antonio’s journey, I’d like to take a moment to thank everyone who supports the podcast. If these episodes have helped you or a loved one in any way, please consider supporting the show through Patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 0:55
Your support keeps the podcast going and allows me to continue sharing these valuable stories for stroke survivors and their families, I’d like to make a special shout out to our newest Patreon supporters, JK, Jolene Oh and Cecilia, thank you for joining our community. Your support means so much, and I’m truly grateful to have you with us.

Bill Gasiamis 1:20
Antonio Ianella, welcome back to the podcast.

Antonio Iannella 1:24
Thank you, Bill. How are you mate? Good to see you again.

Bill Gasiamis 1:27
I’m really good, man. Thank you. Is so good to have you back. The first time we met was the 15th of November 2017 sorry, that’s not the first time we met, that’s the first episode that we recorded.

Antonio Iannella 1:40
Yes, we met, maybe before then we met in, I reckon, about 2011 or something like that as well.

Bill Gasiamis 1:48
2013 we met at the Stroke Foundation, where we both decided to be speakers on behalf of the Stroke Foundation to raise awareness against stroke, right?

Antonio Iannella 2:02
Yes.

Bill Gasiamis 2:04
Let’s talk a little bit about that briefly before I give people a bit of a rundown of the previous episode and what you’ve been through, what was behind you deciding to go and be an advocate for Stroke Awareness, for the Stroke Foundation back then.

Antonio Iannella 2:22
Yeah, I am. I met someone who was doing that role, they were a stroke survivor, and they suggested I get involved. So I applied and got the gig pretty straight forward, and she sort of thought I’d be a good candidate, and like you and I have both become our community, representing for our language, well, our heritage.

Bill Gasiamis 2:49
That’s it, yeah, you, Italian, me and Greg.

Antonio Iannella 2:51
Yes, yeah.

Bill Gasiamis 2:57
And what was it like doing that for you, though you were in the thick of it then. So what was it like actually doing something like that? What was the benefit of it I suppose.

Antonio Iannella 3:06
At first it was the challenge and wanting to be involved in raising awareness, and then I just really enjoyed the people and meeting everyone and meeting you and everyone else, and there was this spirit about volunteering, that when we’d get together and have those meetings and discuss what we’re doing, that would just the energy just was so lovely that I really enjoyed it, and then getting to do those presentations to the public was just felt so critical and so needed in society.

Antonio Iannella 3:40
So, I just locked it up and got a lot out of I’d walk away from a presentation exhausted, but just so fulfilled, and so and there’s different types of exhaustion. There’s those that you feel like you’re so fatigued, especially with stroke, that comes from nothing, you can’t work out, why do I feel so tired? And then there’s fatigue from doing too much, but you’re satisfied because you’ve you’ve accomplished something.

Bill Gasiamis 4:08
It’s a completely different version.

Antonio Iannella 4:10
Yeah, absolutely. So that’s the feeling I was getting from the presentations.

Bill Gasiamis 4:15
Yeah, that’s the one that you go after, you go after that kind of fatigue, because there’s a massive payoff, right? Whereas fatigue that just drives you to the bed or to the couch, that’s the kind of fatigue you want to not have and you want to avoid.

Antonio Iannella 4:31
Absolutely, absolutely. I had one of those days yesterday, and it was just I didn’t sleep so well the night before, and it was just a horrible fatigue that, you know that I don’t want to feel like this, but you just plow through it and I’ve got a busy week coming up, and another by the end of next week, I’ll be quite fatigued, but it’ll be a nice feeling. So yeah, absolutely, mate I get it.

Bill Gasiamis 4:54
When we met in on the podcast, November 15, 2017, And by the way, for anyone watching and listening, I advise you guys to go back and get a bit of a sense of where Antonio was at back then, there’ll be links in the show notes, so you’ll be able to find the previous episode that we recorded. Your journey, you discussed your journey basically in 2009 you were 38 overseas on a family trip. You’ve experienced a stroke, you’re in Saigon, right in hospital in Saigon.

Antonio Iannella 5:31
Yes.

Bill Gasiamis 5:32
No language, trying to navigate all of that kind of stuff. And then, as we kind of went through the episode, you spoke about the the mental and emotional struggles are very common, everything, absolutely yes, go through all the time, depression and anxiety and then, like somehow, sort of discovering resilience at the same time. After you guys got back, you you went through a divorce as well, you guys separated.

Antonio Iannella 6:03
We had we it was kind of what I after so many years, I’ve concluded that was the straw. It’s cliche, but the straw that broke the camel’s back, and there was just, there was a history of some trouble there and problems, and it just like it was just beyond repairable by that stage, and the best thing to do was just start again, I guess, and it was also part of that journey of rebuilding a new life.

Bill Gasiamis 6:33
It seemed to be like a line in the sand moment for you.

Antonio Iannella 6:36
Yeah and, you know, yes, line in the sand. We’ll get to that.

Bill Gasiamis 6:40
And if I remember correctly, there was this other weird benefit that you didn’t expect, which was because you had shared custody of your children, sometimes, when the children with their mum and your ex wife, that would give you that recuperation time and rest time to recharge so that you could see them again down the road?

Antonio Iannella 7:01
Yes absolutely, that was critical, and also gave me an opportunity to explore the things I wanted to do without having to think about, you know, get my kids to school or doing those tasks that quite as a parent, I could just solely be about myself, and it was a good healing process that I had to go through.

Bill Gasiamis 7:23
Yeah, and what are your deficits that you’ve had to live with, that you’re kind of overcoming, or that you’ve adjusted to having tell me about the deficits?

Antonio Iannella 7:35
Yeah, adjust. I think adjusting is the right word or healing, because you, for most stroke survivors, you’re left with some kind of deficit, and I think through a process of time, you you’re able to work at how you can manage those and how you can make your life work. For me, you know, I was in a pretty bad way, lost complete function of my body. Had problems speaking and vision, hearing loss, so and once I got back to walking, what was left was mainly weakness on my left side, so I don’t have a great little control of this hand.

Antonio Iannella 8:12
I still have problems with this, I definitely see my speeches come back, which is pretty good, walking and balance, they already, they are an issue, but fatigue is also a massive issue. So yeah, I’m left with those, and it’s really, it’s all about managing and just finding ways to do things, get back to doing things that I enjoy, and finding a way to do that that works in with my, I guess, limitations, and a great word, but I can’t run anymore, and I can’t ride a bike, and there’s so many things in I can’t go hiking and but, you know, I can do other things.

Antonio Iannella 8:52
I do go walk in and I work out, and so, yeah, it’s really about replacing a lot of things that you once did with new things that you can do, and I think, I don’t think you can learn this. I mean, you can’t be taught this during your early days of recovery. It’s something you just physically and emotionally have to go through, and you get to this point eventually where you discover, I’m going to let go of what was there and rather focus in on what I lost.

Antonio Iannella 9:21
You begin to sort of focus on what you still have and develop that into something that works for you, I don’t know, I don’t want to, I don’t want to ever say that, it’s never going to be the same, because some people make really, really good recoveries, but you know, there’s going to be always something left behind, and you just got to apply that to your life and go, and like I said, it’s a very long bridge to cross.

Bill Gasiamis 9:46
You’ve been doing it for 15 years.

Antonio Iannella 9:48
15 years, yep.

Bill Gasiamis 9:50
Is this 15th year kind of the best year yet, I know that you’ve had a lot to overcome, like most drugs vibes, you know, there’s been plenty of water under the bridge. But is this the best year yet? As far as your mental health, your emotional health, your physical health, where are you at with the whole journey?

Bill Gasiamis 10:11
Let’s take a quick break here, but we’ll be right back with more of Antonio’s inspiring journey in a moment. While you’re here, I’d like to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. This book isn’t just a memoir, it’s a practical guide for achieving post traumatic growth after stroke.

Bill Gasiamis 10:32
You’ll find stories from other stroke survivors who, like Antonio, found ways to grow and adapt after their trauma. You can find it on Amazon or at recoveryafterstroke.com/book.

Antonio Iannella 10:46
I do feel this is the best year, because it’s something that gets overshadowed a lot is the emotional recovery, and we don’t spend a lot of time in rehab working on that, if you think about it, when you’re in for me, when I was in rehab, it was physio, hydro, OT, OT Assistant, psych. Only one session is psych a week, psychology and so and you you’re not really prepared for the emotional struggles you have once you’re out of the hospital system.

Antonio Iannella 11:20
So you go through that process of learning and really connecting with other stroke survivors who kind of advise you that this is normal, where your feeling is normal, and then you start to go, okay, so yeah, there’s been a lot of learning, a lot of growing, and finally arriving at that place where I feel like, like your book says about this, it feels like it’s the best thing that’s ever happened to me, but it’s taken a long time to get there, and I’m not going to say that there are days where I wish that I just hate this thing, because there are, you can’t.

Antonio Iannella 11:51
I’m not going to pretend and say it’s all great and running around giving people high fives, because it’s not the way it is. It’s really just there are days I want to give up. Honestly, there are days where I’m just like, I’m human. I want to give up, but I just try and make sure there’s only minimal amount of those days, and they’re more positive days, and I guess that outweighs it, and I’ve been able to get back to doing some of the things I just love to do, and I look at it like, if I didn’t have my stroke.

Antonio Iannella 12:20
I wouldn’t have had that opportunity to do these things, and you know, I call it, there’s Spanish word, it’s two words, jerky or complete though, which means ‘Full Circle. And I feel like I’ve come full circle back to who that person I was before my stroke, well before my stroke. So that put me on that path of what I want to do with my life and pursue the things I’m interested in.

Bill Gasiamis 12:46
Do you feel like you’ve found your essence?

Antonio Iannella 12:50
Yeah, I feel like I’ve found that person I’ve worked to want to be. When you’re younger, like in your 20s and 30s, you just haven’t fully matured to that,I’m in my 50s now. So you get to that point where you just go ‘Hey. You know, you realize what’s so important, and, you know, and I had to let go of all those things that most of us are doing, like pursuing a career.

Antonio Iannella 13:15
Doing really well at work and and then just letting all that go and just reinventing myself and getting back to the things I love, like making music and being creative and enjoying the sunshine and nature and, just simple things that you know bring me joy. And you know, a lot of times, in my previous life, I didn’t, not that I didn’t have those things, but they were just minimal because you’re busy, busy, busy, busy.

Bill Gasiamis 13:44
Stopping to smell the roses, like really, and then you just do it, and it’s easy to get distracted, right? It’s absolutely tons of things to distract. So everyone does that and I think it’s very standard and normal.

Antonio Iannella 13:57
It’s normal, it’s not there’s nothing wrong. It’s life, and I love to sort of be able to do so, especially when you know, I’ll give you a little example. About a week ago, I saw a friend, he posted some video of himself hiking through somewhere Kangaroo flats or somewhere just outside of Melbourne, and it looked it was the sun was shining, and he had a massive smile in his face.

Antonio Iannella 14:24
And I just had that moment, my heart just went ‘Oh, I just love to do that, but, you know, and you know, and I hated where I was at, but then I just let it go and move forward and then focus on those things that make me happy. So, yeah, it’s normal. It’s a normal lifestyle where everyone does there’s nothing wrong with it, just finding time to be able to enjoy those small things is really important.

Antonio Iannella 14:24
Yeah when all this happened to you, the family was young, wasn’t it like?

Antonio Iannella 14:50
Yeah, they’re all young.

Bill Gasiamis 14:59
How young were the kids?

Antonio Iannella 15:02
Three daughters are all under 10. So there was a 10 month old, a five year old and an eight year old. And yeah, we’re in Vietnam at the time.

Bill Gasiamis 15:13
Yeah. So now they’re all sort of approaching the end of high school, and some of them are probably already finished, and there’s a whole different responsibility for you, with regards to the kids, that relationship has shifted. Tell me what it’s life now with the kids.

Antonio Iannella 15:30
Yeah absolutely, it’s it has shifted greatly, because they’re two of them adults and in the workforce and living on their own and moved out at home. So they’re doing really well. My youngest daughter, 16, she lives with me, and so there’s still that level of parenting responsibility, but yeah, it has shifted where there’s not so much onus on me just having to clean up and look after them and care for them, and they’re a lot more responsible for what they do and, yeah, so it’s given me a bit a bit more space a bit more room.

Bill Gasiamis 16:09
And allocate time to yourself more.

Antonio Iannella 16:11
Yeah, well, if I had hadn’t had this time, I wouldn’t have been able to achieve some of the things I’ve achieved.

Bill Gasiamis 16:18
Is it a bit of a relief when they move out? I mean, it was for me, and it’s sad, you know, it was like bittersweet when my boys moved out in the 20s, I was not even 50, and they had moved out and empty nester and all that kind of stuff, but the space that they created was a relief like it was. When you have a relationship with your kids in the house, it’s always the parental relationship.

Bill Gasiamis 16:48
Doesn’t matter how old they are, but when they move out, it shifts. You have a different adult relationship with them, and it’s not about parenting them or making them pick up after themselves, or any of that stuff. Did you find that?

Antonio Iannella 17:02
As you were saying that I was just resonated with me, because that’s what happened with especially with my daughter, Molly, who moved out only a year ago or so, and she and I’m just watching her from a distance, just into that world of, you know, being responsible paint her own bells. She started a little business where she makes film and doing that, and watching her just grow and picking up clients, and it’s just and like you said, it’s more of a it changes.

Antonio Iannella 17:32
The dynamics change because you’re no longer overseeing them as a parent, under your household. They’ve got their own household, and you just witness it from a distance and then provide support, maybe in the in the sense of just some guidance, and it’s a nice it’s a nice connection.

Bill Gasiamis 17:51
You know the kids moving out. Do you think that’s what created the space for you? We’re going to talk about your book right now for you to kind of finally wrap up this project of your book, or tell us a little bit about that journey, about the book. Firstly, before you start telling us anything, do you have a copy of it there? Show us.

Antonio Iannella 18:09
Sure thing.

Bill Gasiamis 18:10
Saigon Siren, memoir of a stroke recovery, Antonio Iannella, fantastic man. I love the cover. I mean, the whole thing is amazing.

Antonio Iannella 18:10
Thank you.

Bill Gasiamis 18:10
But you’ve been on this writing journey for quite a lot of time. I thought it four years for me, took a while. But how long have you been on this writing journey?

Antonio Iannella 18:32
It began, I reckon it began around the time I met you back in 2012 and it just the idea was just bubbling in the back of my head for a while, and and then I got into about 2012 with no idea of what I was doing. Just thought I’d just write, and I wrote, wrote, wrote, and then I had some guidance, had some involvement with other writers through a writing group that was really helpful, because they kind of gave me an idea on how to get a story out and how to tell a story.

Antonio Iannella 19:05
Because, you hear so often, you know that saying that everyone’s got a book in them, it’s true, they probably do, but telling the book or writing the book is just a whole nother thing completely. So that’s what I had to learn, I knew how to story of Vietnam thing and recovery, and then after about a year of 2012, 2013 maybe up to 2014 it kind of stopped, come to a bit of a stop, and I got involved with doing other projects, music and and then it wasn’t till COVID, and that reignited it, I thought, you know, I’m going to get back into writing.

Antonio Iannella 19:42
One of the first things I did, I had about 80,000 words. One of the first things I did was I extracted a chapter bang in the middle, and turn that into a short story, and I sent that into just the local writing competition through the library, and I received the third prize award, and I thought ‘Wow, there’s something in this. And then I started sharing the story with a few friends, and they loved it, and it just gave me that confidence too.

Antonio Iannella 20:10
And I must say, there was one other person who was reading my chapters at that time as I was writing them, and she, although she was quite brutal in terms of the feedback, but it helped my writing so much, because I’d send the chapters in, she just like a school teacher, she just highlights sections and go, I love this bit, but you lose me here. That’s cliche, you can do better.

Antonio Iannella 20:34
I’d be so angry, and I wanted to yell at her, but then I’d just get in there and fix all that and rewrite it, and it just gave me strength, and it gave me confidence, and I just kept writing, and yeah, just little key things I did was like this laptop that I’m talking to you on, I bought that and I dedicated it to writing, and I just, although I couldn’t live plenty room in my home to write. I actually went to the library each day and just sat in a corner and just wrote.

Antonio Iannella 21:07
I’d be going through scenes of my recovery, or when it happened, tears streaming down my face I’m in the library. Just imagine all these things and writing and writing and just getting right into the story, and I did that purposely to just have that feeling of ‘Okay, I’m at the library for four hours and I’m going to write, no distractions. You know, there were times I didn’t even bring my phone, my computer wasn’t connected to the to the internet at that time.

Bill Gasiamis 21:38
Wow, it’s really going into it, I love them, and going into the time to write was really difficult for me as well. Like I started writing in lockdown as well, the whole purpose of it was, we were in Melbourne, so we had the biggest lockdown in the world. So there was a lot of downtime, a lot of time to do nothing or something constructive, and that’s what it was for me, and the hardest thing for me was writing, reliving the whole thing wasn’t so hard for me. I wasn’t that emotional reliving it, but I was emotional telling the story in public when I was launching.

Antonio Iannella 22:16
Yeah, did you? Did you find once you when you told the story, like verbally or wrote it, it kind of helped you heal in a way where, I guess it was cathartic for you.

Bill Gasiamis 22:29
Indeed, man is extremely cathartic. I mean, I didn’t expect that, part of I didn’t think that that was what was going to happen, I wanted to tell a story too. I didn’t know what story to tell, either, and that feedback that you were getting that was difficult to hear that chapter, you know, starts off great ‘Oh, this paragraph is terrible, and I was going through that as well, and that’s interesting. How did you find that was difficult? What was difficult about it? Was it that did you initially have that untrained mind of thinking ‘Oh, they’re attacking me.

Bill Gasiamis 23:05
Or was it they’re they’re hurting my feelings? What was it? Because it’s not, it’s constructive feedback, because you want to, they wanted you to have a good book. But I felt that too, that whole weird people are going to give why are people giving me a hard time about it, like that was strange. What was that all that about do you think it?

Speaker 1 23:25
It was strange, it happened also, when I was in the writing group the first time around with the first draft, they also would point out things, and I was but it’s really hard to be objective when you’re writing your own story. So it’s when you’re in the in the storyline, and you’re writing things, you can visualize it in your head, and you know what you’re trying to say, and sometimes you miss critical components that shrink a sentence or a paragraph together because you can see it.

Antonio Iannella 23:56
It’s someone else who does not know nothing about you, they can’t, so it’s really important to get their feedback, and I think it’s about ego, feeling like you get a bit hurt, because all you really want is to be I write about in the book is, you know, all you want is, like, I remember the first chapter I submitted to the writing group when I was part of that group, and I was so you would submit chapters every week, and people, everyone would read it in the group. And then you get together once a week and you talk about the chapters.

Antonio Iannella 24:26
Each person submitted a chapter. And I was, you know, I have submitted my first chapter, I was so excited, I was gonna, I felt like I was gonna go into that meeting library and everyone’s gonna be ‘Oh, you’re a champion, you know, in all these high flames. And there’s the complete opposite, you know? They just, they just taught me to not tore it to shreds, but just everything.

Bill Gasiamis 24:50
Literally, critically, observing it, right? They were observing it critically from a literary perspective.

Antonio Iannella 24:58
Absolutely, yeah.

Bill Gasiamis 24:59
And you are a legend, I think you’re great, everyone thinks you’re great, but yeah, it’s just weird. This ego, like, it’s like little kid emotions, like, it’s some weird stuff that comes up, but it’s, do you feel better for what? Obviously you feel better for it, but in your mind, you might not write another book, I don’t know, but in your mind, does it make you feel like I know how to write another book now, like I could do that better and easier next time?

Antonio Iannella 25:30
Yes, absolutely I do feel that, but I also have been writing a few stories recently, and I’m finding them a lot more critical of my own writing, and I find something as well. Like the other day, I dug out an old story I wrote about a year ago, and I was going through it again, thinking to just, it was just a short story, and I thought I might spruce it up and and I read it to myself, and I was like ‘Oh my God, this is horrible.

Antonio Iannella 25:58
So it was just, I just had to find a way to make it more me and I think learning to write through your own voice and getting the confidence to let your voice speak is part of the journey, and that’s what you need to, I felt I needed to learn.

Bill Gasiamis 26:20
I love that whole idea of getting somebody else to look at your work and and kind of criticize it, so to speak, because, I mean, you don’t want to go through the whole process self publish, which we can do these days, and then put out a book that nobody can read because it’s all over the place.

Antonio Iannella 26:39
Absolutely.

Bill Gasiamis 26:40
Put out a book that’s boring to read or goes into too much detail in the wrong thing that’s not relevant to stroke recovery.

Antonio Iannella 26:48
Absolutely, yeah.

Bill Gasiamis 26:49
So it’s good that you’ve got that, a learning now, that learning is really what it is. It’s another level of learning about, how you have to structure things to deliver a compelling story.

Antonio Iannella 27:04
Yeah, it is important to have those components, because you got to remember, at the end of the day, whoever’s reading the book, the bottom line is, it’s about them being entertained, and you have to, you have to separate almost how you feel about the story, and just look at it from a one of the things I did was I wrote as if I was speaking to someone like you and I are having this conversation, like I’m telling them the story, and always keep in mind, keeping them in mind that this is what I’m doing.

Antonio Iannella 27:33
I’m pitching this story to one person and just trying to make them feel connected and and entertained as well. So what those, all those factors.

Bill Gasiamis 27:44
It’s about the reader.

Antonio Iannella 27:45
Yeah it’s about the reader, absolutely. So that’s what I was I really focused on. That was making it about and trying to be vulnerability is something that we, all, you know, sort of naturally shy away and disclose and keep to ourselves, but I just felt that had to be key component in the story in order to carry the reader through and make them feel connected to the story.

Bill Gasiamis 28:12
Awesome, my copy hasn’t arrived yet because it’s literally just become available, hasn’t it?

Antonio Iannella 28:17
Yes, just yesterday.

Bill Gasiamis 28:19
Yeah, alright so this is being recorded on Saturday, the 19th of October.

Antonio Iannella 28:28
Yes.

The Stroke Experience and Recovery

Bill Gasiamis 28:28
The interview is going to go out in about six days from now, so anyone who’s listening to it, it’s already gone out, and that means that the book has been out for about a week, and everybody can get a copy online.

Antonio Iannella 28:42
Okay.

Bill Gasiamis 28:43
I’ve received the PDF draft of it, and I’ve skimmed through and had a bit of a look again. I didn’t have time to read the whole thing, but I’ve made some notes that I want to sort of go through and talk about.

Antonio Iannella 28:54
Happy to do that, mate.

Bill Gasiamis 28:56
So, I we’ll go back a little bit. We’ll go back to Vietnam, what’s going through your mind when you’re experiencing these weird symptoms you’ve never ever experienced before that are kind of leading your body to stop working?

Speaker 1 29:13
Yeah, that was quite frightening, but to it, it’s kind of like the first sign I got was the rumbling in the hands, in the ears and the tingle in my palm, that was the first sign, but you know how we often as people, get these little twitches, like you might go in the back in there go ‘What was that? And you kind of, and you don’t question, like ‘Oh, I don’t know. And just carry on, it was kind of like that. That was the first sign, and then as it was, as I was beginning to as the stroke was taking hold and sort of, I guess, swiping watching through me.

Antonio Iannella 29:48
It just felt like I was, I didn’t know my own self. I just was losing control of my whole body, it just become like jelly in minutes. So and, but of it for a lot, not a long time, but for the first few days, I just thought something was just going to be okay, I don’t know, I had this kind of naive sensation that I’ll be right, I’ll be fine, it’s probably just a bug.

Antonio Iannella 30:15
You know, the first thing I thought was I’d been bitten by something because I had the day before, we had been cruising through the the Mekong River, through some of the little villages, and something bit me on the foot, and I just thought it was probably just that a really a reaction to that number, okay, but turned out it wasn’t. So it’s quite, it was really frightening, you just losing control of yourself is just well.

Bill Gasiamis 30:45
And it was an AVM, wasn’t it?

Antonio Iannella 30:46
Yeah, AVM like you have had, which we discovered when we met, that we both had AVMS. And prior to that, people don’t know what an AVM is basically, it’s a weak vein in part of your brain that ruptures and bleeds. Generally, it’s just from a malformation you’re born with it, and apparently, statistically, so heard between the ages of 30 and 40 is when they’re most prone to bleed.

Bill Gasiamis 31:16
Yeah, that’s so many people I’ve interviewed with AVMS in that age bracket, which is so weird that they all kind of have this shitty timer that they’re all set to kind of go off at around that time, like, it’s so strange.

Antonio Iannella 31:32
And there’s no scientific I guess, statistics to show why or explain why this happens at that age and like when, when it happened to me, and that first thing they did were checking out is they check your vitals and check your blood pressure and your blood sugar and your heart rate and all that, and everything was fine. I had no pre previous health condition, and it wasn’t until they discovered after MRI that had this.

Bill Gasiamis 32:05
Was the MRI in Vietnam? Or did you have to get to Melbourne to get that?

Antonio Iannella 32:10
No, the first one, I had many, but the first one was in literally within an hour of getting or not even my memory is quite vague, but when we arrived at the hospital. I think we’re straight into the hospital, and next thing I know, I was in having a navy I don’t even remember the MRI, but I just remember, like, being wheeled through parts of the hospital, and I remember the two orderlies who were pushing my my bed.

Antonio Iannella 32:38
They were speaking in Vietnamese, and I couldn’t work out where I was, I couldn’t understand them, I couldn’t work out it was because I was speaking in Vietnamese, or was it because I couldn’t understand it? That’s all I remember.

Bill Gasiamis 32:57
You’re in a foreign country, we know what Australia’s medical systems like.

Antonio Iannella 33:03
Its world class.

Bill Gasiamis 33:05
It has its limitations, but it’s world class, right?

Antonio Iannella 33:08
Absolutely, it is really, really good.

Bill Gasiamis 33:09
Yeah, and if you live in a city, you’re really confident that you’re going to get amazing health care, but when you’re in Vietnam, that’s not so certain. Was that a concern? Something that was on your mind as well, or how do you manage that whole idea?

Antonio Iannella 33:26
I can’t say it was on the forefront of my mind, there wasn’t much in my mind, apart from a panic, fear and distress and just what I was, I kind of felt like I was just holding on, holding on to life, so just some wasn’t slipping away. There was, there were a few things like they couldn’t the nurse couldn’t get the this is one of the first days in ICU. The nurse couldn’t get the intravenous line into my vein, and I remember they were just trying to get it in, they just couldn’t get in, they ended up putting it in my neck.

Antonio Iannella 34:01
So there were things like that and, and if I’d asked for something, well, I could just speak, but if I’d asked for this, they’d bring me something else, or if I’d asked for a drink, they would fix my bed sheets or, you know, so there was a bit of that going on, but what they may be lacked in medical practices, they made up in care. They really cared for me, they were kind and sweet, and even the doctors, all the doctors were French, because during the French invaded Vietnam hundreds of years ago, so they have a big hold on France.

Antonio Iannella 34:42
It’s a lot of Bill on Vietnam. There’s a lot of buildings that were built during that era of their reigning in Vietnam. So there’s a there’s a heavy French influence. So the hospital was called the Franco Vasco Hospital, which is a French name, and the doctors wore French, in the ICU ward. So they, not only that, we had Vietnamese nurses and staff, but French doctors who didn’t speak English.

Antonio Iannella 35:16
So there was just another layer on top of that, and they just barely could, they few words here and there, but they really looked after us. Under those circumstances, we’re in a foreign country, three young children, their mother myself and they looked after us, they did.

Bill Gasiamis 35:36
How far into your trip were you when it happened, and how long did it take you to get home?

Antonio Iannella 35:42
Well, the day before the ninth day we’re coming home on the 10th day happened the last the day before departure, and it was on our last trip, which was to visit the underground war tunnels that were built during you know more. So yeah, we got to have the whole holiday, and did everything, and went on some amazing cruises and villages in the Mekong and, yeah, some beautiful little towns. So we had an amazing time, which kind of was wiped out after having a stroke. So that all just slips away, and you forget about it’s not two months later, you start to ‘Oh yeah, we’re in Vietnam.

Antonio Iannella 36:22
Remember that Bucha? Wow, that was amazing. So it was a bit like that, you know, but, yeah, so it was literally at the end of the trip, and there was no sign at all that I was, you know, not no headaches. Oh yeah, there was a headache. I wrote about that in the book a few days prior, I had this headache, or the day before the stroke, I had a headache, and I thought maybe that was it, but you know, as you learn AVMs, they don’t leave much of a trail.

Bill Gasiamis 36:53
I had one massive headache about it was November 2010 it was about a week long, ridiculous headache, I went to hospital, they did a lumbar puncture, they checked everything, they were looking for a bleed in the brain, and they couldn’t find it because they weren’t expecting an AVM. They weren’t looking for an AVM, and even when they scanned my head, they missed the AVM that was there and then.

Antonio Iannella 37:25
Hadn’t bled it yet.

Bill Gasiamis 37:28
I reckon it was just playing up and just causing a little bit of irritation to the neurons and to the brain around there, it was terrible headache. Anyway, I went and we went home after, like, being in hospital for a day or so, for a day, and they checked it out, and then I was out cold on the bed for and on the couch for the next three or four days, and then started to finally, kind of settle down, and it took about more than seven seven or eight days to settle down, and that was the first sign for me, I think.

Bill Gasiamis 38:04
That was November 2010 and then the bleed happened in February 2012 It was about 16 months later that it happened.

Antonio Iannella 38:19
Although it might, it may be impossible, but did they connected to that? Were they able to say that could have been or I just don’t know, I asked and they didn’t connect it. Yeah, that they can’t, it’s too hard to work these things out.

Bill Gasiamis 38:31
Yeah, which makes sense.

Antonio Iannella 38:36
Did they say the bleed happened at the time you went to hospital, like the day before, or did they say the bleed that’s been there for, you know, like that little bleed has been there for a while.

Bill Gasiamis 38:46
When they found the bleed in Feb 2012 it was happening for seven days, because I didn’t go to hospital for seven days, like I knew that it was, you know, the thing you mentioned, you felt weird somewhere. I was feeling weird in my my big left toe, okay, and that was it just my little toe, my big toe, and then it spread to the left the rest of my foot, and thenafter, seven days it had slowly spread all the way up to my entire left side.

Bill Gasiamis 39:19
But I knew it was when they said you’ve had a bleed. Well, then I realized it started seven days earlier, but that was the first sign for me, other than that massive headache, how did they resolve your bleed, your AVM? What did they do to rectify that?

Antonio Iannella 39:37
Nothing, it just healed on its own, I did. They did look into treatment, but they first, the first thing was they couldn’t work out was an AVM for probably about a month because it was bleed, I had mine in my brain stem. Brain stems only about this wide, so and it wasn’t a massive bleed, but because it was a the brainstem and cause a lot of damage, but they needed, basically, I had two, I think it was a third MRI.

Antonio Iannella 40:10
They still weren’t able to work out why I had the hemorrhage the AVM. And it was an angiogram that was, they worked that out, but they basically said, because of the brain to them, I did go and see surgeons, they’re on few to surgeons and had some radiation treatment done, but it didn’t go well. So it was just, he just healed itself and it’s still there.

Bill Gasiamis 40:37
Okay, alright.

Antonio Iannella 40:38
And I remember we were talking about this, because you did end up having to treat yours.

Bill Gasiamis 40:43
Yeah, I had brain surgery. They took it out, and that’s the reason I have deficits today, is because of the brain surgery. So that, up until I went into the brain surgery, I would have said that my deficits were all kind of superficial, because the blood was in there and it was messing things up, right? But as the blood started to subside and go away, between bullied two and bleed three, which were quite a long, a long way away from each other, the all my neurological deficits went away because the blood started to subside the third one.

Bill Gasiamis 41:21
The neurological deficits came back, and then the surgery, because the AVM was deep in my brain, kind of to the center near the cerebellum. The to get there, I imagine they’re gonna move a lot of stuff around and touch stuff and whatever. So hard to imagine that, plus cutting, actually dissecting and removing the blood vessel, you know, there’s no doubt that they’re going to have to cause a little bit of damage somewhere.

Antonio Iannella 41:53
Because they said that, they said this may cause some damage.

Bill Gasiamis 41:58
They did say that, they also said the whole you might not wake up from this, and the whole lot, right? And then when I did, and then couldn’t walk, and at all, my left side was completely gone, my arm and my leg and and all that, they were just matter of fact, I can’t get him into rehab, that was it, that’s what they said. So I did as much rehab as I needed to be able to get to the toilet independently, and maybe make a cup of tea and have breakfast, because my wife was at work and my boys were at school.

Bill Gasiamis 42:35
So the one I’m what they were keen on was when I was at home, that I was going to be able to get around the house without being a risk of falling. Which almost worked, I fell a few times, but most of the time get it okay, I was okay. So, they removed it, and they’re the deficits I live with today, and it’s on my left side, it’s still numb. I can walk, and I can use my arm some.

Bill Gasiamis 43:03
Sometimes I get, like, spasticity in the muscles, you can’t see it in my hand, I don’t have like, visual signs of spasticity, but I have tone, like ‘Okay, yeah, and it really hurts. And then sometimes that throws out the rest of my body, It’s a big mess, you know, and then massages, and then there’s a rehabilitation process to get me feeling well, not balanced, because I’ve never felt balanced since, but somewhere on the verge of it

Antonio Iannella 43:31
So close to it, yeah.

Bill Gasiamis 43:33
Yeah, and then, like, if I have bad days, then I sleep rough one night, then the next night, the next day, is a bit of a challenge, and it’s definitely harder to get through, but these patterns I’ve recognized so like you, I know how to navigate them, and they impact me less, they make it, it’s not as hard as it used to be.

Antonio Iannella 43:55
Yeah, that’s what happens. It’s kind of it’s it’s forever unfolding, I find as well, because I find it really difficult to separate fatigue, or am I just feeling tired because I didn’t sleep well? Or is that the stroke? Is that headache related to this? Or is it now I just, I just ride all those feelings, and at the beginning I’d panic ‘What was that? And, you know, there’s, there were times I’d be rushed in the hospital, and it just turned out I was having a panic attack.

Antonio Iannella 44:27
And so as the years go on, you start to recognize and realize ‘Okay, to that, and it’s just that, it’s probably this, so I’m okay, but just the other thing I was going to say, you can’t separate the mind and the body and the spirit, and it’s like you didn’t sleep well, and affects you, and you see your hand cramps up, and then it affects other parts of your body, that happens to me too, like, it’s just whole experience.

Bill Gasiamis 44:54
It is the whole system. You were a musician too, right? And you still are, I know, but initially you’ve had the stroke, you’ve come back, there’s time in rehabilitation. You come back to some kind of home life, and you’re not able to participate the way that you did before, in your band and in music, and your identity is impacted massively. What’s it? What was that like?

Antonio Iannella 45:24
It was heartbreaking at the beginning, really heartbreaking because I’ve been a guitar player for on time since I was a teenager, and that really hurt. It still does sometimes, but I managed to find ways to make music one handed on the piano, and it was really because I wanted to compose, and so I transferred what I knew about music onto the piano one handed, and was able to make music, and then once I discovered that process, it was just like someone opened the flood gates with ideas.

Antonio Iannella 45:59
Because it just really, just went, wham, I produced so much music that I never thought I’d be able to do that in, you know, in my late 30s. So, yeah, it was just matter of finding a new way, and that’s just for me, it was that, but I think for most stroke survivors, it’s just finding a new approach. We saw we first, one of the first things we spoke about was adjusting, a lot of the recovery is about adjusting, finding new ways, not necessarily getting back to how you did it before, but now going.

Antonio Iannella 46:35
Okay, I’ve got these skills, and I can, like for me, I can make music, and I’ve written lots of music and played in bands as a guitar player, and used to gig and do all that stuff. I can’t do that anymore, bro, I could, I still know music, I can still hear music, I can still compose. So I just started turning all that into and finding new ways to sit at a piano and make up melodies, and then built a studio and got into music production. So, yeah, I just found a new way to make music, and now just keep doing it.

Bill Gasiamis 47:09
Yours are transferable, right?

Antonio Iannella 47:11
Exactly, yeah.

Bill Gasiamis 47:12
Properly transferable.

Antonio Iannella 47:13
Yeah, and that just music is just that example for me, but it could be something else for you. You know, maybe you love to knit, and all of a sudden you can’t do anymore, but you could, somehow invent a system where you do it with one hand and, yeah, so it’s really about thinking outside the box.

Bill Gasiamis 47:31
Yeah, you know, in those really difficult times, what was it for you that helps you kind of keep pushing on and pushing through, I know there was those days where, you know it’s like you wanted to give up. You mentioned it earlier, but you didn’t what was behind not giving up, other than just clinging to life and wanting to be alive and all the usual stuff. Was there something more deeper that helped you kind of keep going?

Antonio Iannella 47:58
Yeah, I think it’s part of my spirit to be a person who does that. Is just to keep trying and having resilience and discipline. It’s part of who I am. But also, I’ve had young children and seeing them, having to go through that, having to see that, I would often think about, I remember in when I was in ICU, I would think about how they wouldn’t be feeling, you knownot only me, because they’re just, I can remember them, just beside my bed, and their little heads would pop up.

Antonio Iannella 48:32
And their mother had to lift them over the rail to give me a little kiss ahead, or whatever. So those that was, just holding on to that, and I need to be there for him. So that was one of the keys, and another thing that really, I guess, kind of gave me, I guess, motivation and inspiration was people just the way that they showed how they cared and stepped up and did things for us. Little, little might be little things.

Antonio Iannella 49:03
But one of the examples was the head doctor in ICU, his wife, French wife, took my daughters out with her for a day, and her own daughter just for a day out swimming. So just little things like that. And, you know, come as in ICU, and I’m being told this stuff, and I was, I could still remember feeling completely humbled by that. So those gesture, those kind of things kept me going.

Bill Gasiamis 49:33
Yeah, you if somebody met you today, they would definitely know that you’ve had some kind of an injury somewhere, right? But they wouldn’t know that it’s been a 15 year journey, and they might kind of gloss over, especially if they’re not stroke survivors. They might gloss over some of the hard times, and in amongst there, there was small victories, right? Tell me about the the small victories. What were they for you? Which ones, the were, the ones that were significant? That were small, perhaps in in somebody else’s mind, but were a big deal to you.

Antonio Iannella 50:09
One of the most, the high there was, there was a lot of little milestones, I speak about them in the book, and that I’d seen that big, but for me, though massive wear because I couldn’t sit up. For example, if I was in I was at the beginning through my recovery, I didn’t have much control over my body, and I didn’t have enough core strength to help me to sit up, so my body would just crumble and roll to the side, and then once I was able to sit up, and I started getting a little bit of function, I got function back to my right hand, and they were like, once I did that.

Antonio Iannella 50:45
I kind of, it was like, it was such a revelation, because I’m like ‘Oh, I can do this. They were the first tiny little glimpses of hope, because suddenly I went from only being able to lay flat in my bed to being able to sit in the arm chair by the window, and it’s not a big deal, but to me, it was like ‘Wow, look what I’ve done. I was so proud of myself. And then it was just, just continued on and went from that, and then I was able to get out of bed, from the bed to the wheelchair, and you have to be airlifted out of the bed anymore.

Antonio Iannella 51:24
So there was those things, but the one of the biggest things was the first time I walked, and it’s I write up quite a lot better in the book, because it was on my birthday. In fact, on my 39th birthday, and I was just in the ballet, in those gymnasium rails, and we’d been doing physio, and I don’t know if my physio, she was marvelous. She was she was so great at her work, and she just gave me that opening to let go and walk, and I let go of the rail, and I walked for about 10 steps, and I did it.

Antonio Iannella 51:55
So it was one of those moments like I couldn’t believe and I grabbed hold of rail, I turned around and she was smiling. So yeah, that those things like that, and that those two, but that’s quite a big milestone, and when I tell others that story, it’s quite anyone can connect today. Another one was getting back to driving, that was such a mission, and I was, and I was able to do within about 10 months, and it was just because I was just so determined, and I remember my physio like, I’d be like ‘Alright, I want to drive. Like she’s gone.

Antonio Iannella 52:30
‘No, no, no, and you can’t drive too early. Go, okay, no, I want to drive. Christmas isn’t coming up. I want to drive. She’s going, but maybe next year, you’re not ready, like she got and plus, it takes about two months to get, there’s a two month waiting list to go on the driving program, and I’m like ‘Put my name down, put my name down, If I fail, then I know I’m not ready. And so she put my name down, and somehow I got to the top of the list.

Antonio Iannella 53:00
As they say, it’s not what you know to, got to the top of the list, and I had to go my license, had a crack at it, had a couple lessons, failed, then went again, and I got it. Just like a week before Christmas, I got it. That was my dream, I wanted to get it for Christmas, and I saw ‘Wow. And it was just such a, such a great moment, you know, especially when I just did the driving test and get back to the hospital, and I turned around and the driving instructor, and the person does, the examiner, just seated it back.

Antonio Iannella 53:30
She didn’t say anything. I just turned around and, look, don’t you just smile at night, and I just didn’t have to say your past. I just knew, so such a great moment. I felt like I was, you know, when you get, remember, when you got your license for the first time? I felt like that, but I had my car already bought myself a little car, so I didn’t have a car at the time, and driving.

Bill Gasiamis 53:52
You’ve had that. Just got my license moment twice dinner.

Antonio Iannella 1 53:55
Yeah I had it because it’s a rebirth, isn’t it?

Bill Gasiamis 54:00
Yeah. It’s ridiculous. how important that is, and makes complete sense. Were you? Did you lose your license when you were examined in Melbourne and went through all the stuff? Did they take it from you? Or was it just that you can’t drive?

Antonio Iannella 54:16
It was not suspended. But when you have a medical episode that’s related to the brain, like a neurological disorder, you have to either be tested or you’re suspended until Doctor report stuff like that, because there was quite a few hurdles. I had to get a doctor to report medical report, vision report, driving test. So it was quite, quite a process to go through.

Bill Gasiamis 54:39
I don’t know what happened with me, but they missed all of that stuff with me, I didn’t ever have mine suspended or lost or anything, and I remember not being being kind of under doctor’s orders not to drive, but I drove anyway. It wasn’t official, and I never got the ‘You can now drive conversation. It was just like, I suppose I can drive now. Like, yeah, I don’t know what the deal is. So I just did, and it was really hard, it was so fatiguing and it was so challenging. What was it like for you, even though you drove? What was it like neurologically?

Antonio Iannella 55:19
Yeah, everything you just said absolutely, because by it, what a lot of people don’t understand about people with stroke who have had strokes, stroke survivors, is that the cognitive function to process information is just so exhausting. So when you’re put in a position where you’re driving a vehicle and you’ve got a lot to think about, it’s not like you know the subconscious mind normally, when you drive, the sub subconscious mind takes over, you notice that, once upon a time, used to drive somewhere and you don’t remember getting there.

Antonio Iannella 55:49
You just all you remember is you’ve gotten there, you don’t remember you went through anything. Did I go through those? You can’t remember when I found for the first few years, the conscious mind was driving, I was thinking, always thinking about it, the conscious about the traffic, about and it’s so exhausting. Because when, when that part of the brain is working over time, all the time, it’s really draining. So yeah, I found it quite and now I still find it, you know, anything over a few hours is a bit difficult for me.

Antonio Iannella 56:22
My time driving, yeah, I struggle with, I try and avoid it, but it’s, it’s not too bad, mainly because I’ve got vision. My vision isn’t the best due to my stroke. So that’s having a lot of problems with this eye and the reflective light. So for about five years, I could do a medical and vision report every year after my license, and then five years later, I get a letter to sayyou don’t, you need to do any more medical reports.

Bill Gasiamis 56:53
They’re probably tracking the condition, whether it was stable or yes, changing something like that. You know, when you left Vietnam and came back, what was that trip like? Actually, were you with your family? Was that a medical evacuation? How did you get home?

Antonio Iannella 57:10
It was a rescue flight. It was a coordinated rescue flight that my daughter’s mother arranged without my knowledge, with a service that provides those kind of things, she was able to source that information through the hospital, and then it was a massive fee to get us, to get us home, no insurance, COVID, and it was a first what happened was they appointed a doctor who for the few days leading up to the flood, or a week, and they just monitored me and check if I was healthy enough for the flight, and at that stage, I contracted pneumonia.

Antonio Iannella 57:49
So I was not only dealing with stroke, also had pneumonia, and they were just a bit nervous about the whole the pneumonia, and the thing I don’t know why, but their process was, once the flight is booked and the service is scheduled, there’s no turning back. You can’t you basically, if you cancel the the the arrangement you don’t use your money.

Antonio Iannella 58:15
Get billed for it anyway. So we had to go, and so I was flown back with a doctor sitting beside me and a nurse, and the nurse, the doctor, literally slept through the whole flight, and the nurse just looked after me, he was a champion, he’d cool my body temperature when I was born, because my body temperature would escalate and then drop, and then I’d be freezing cold and again, you’ve got no complete control of it, and this person’s is basically your life saver.

Antonio Iannella 58:45
It’s like they’re looking after you, make sure you don’t die, that was his job. So, yeah, I don’t know if I’ve told you this, they had to get me off the airplane, they had to wait for all the passengers to get off board, and then they the airport had, Melbourne Airport had to get a cherry picker, kind of like a cherry picker, to escalate me down from the from the airplane or to the tarmac, and then there was an ambulance there waiting for me and into the back of the ambulance and straight over to the hospital, big process.

Bill Gasiamis 59:19
They’ve got that system in place for all medical emergencies. I imagine when people pass away on an airplane as well.

Antonio Iannella 59:26
Yeah, yes. So that’s what it was.

Bill Gasiamis 59:32
So the kids were on the flight, your wife was on the fly at the time, everybody was on the flight together.

Antonio Iannella 59:37
Yes, they were on the flight, but they were sitting at the back, I was in business class, and I see it up back, and they just, but they had like, they would come up and visit and drop, coming up and say hello, give me kiss and stuff, and then once we got to Melbourne Airport, they went through departure, returns and all that as per normal, and then I met them at the hospital.

Bill Gasiamis 1:00:02
It’s pretty shit way to get into business class.

Antonio Iannella 1:00:04
Yeah no, that was my first business class experience, and yeah, didn’t get to sip champagne or anything like that, I was just clicking on to life.

Bill Gasiamis 1:00:19
So then from there, from the airport straight to hospital.

Antonio Iannella 1:00:22
Yep, by that stage, I was starting to like, my awareness was beginning to realign itself, I was beginning to understand things. my speech was slowly starting to come back, but I had no control of my body like I did have some function to my right hand, I hadn’t tried to stand up or anything like that, but yeah, so I could, I’ve become aware of what was happening.

Antonio Iannella 1:00:48
So things become quite vivid by that stage where I knew, like, I can remember that, been in the ambulance, that the doctor talking to the paramedics. I can remember, being in the waiting room, or not in the waiting room, but in one of the rooms at the hospital, the first few doctors I saw. So I remember all those bits.

Bill Gasiamis 1:01:09
My books about post traumatic growth, basically, right? That the topic, the the heading, doesn’t suggest that specifically, but that’s exactly what it’s about post traumatic growth, which is the idea that we can find meaning and growth from trauma, right? I know the stroke changed you in many ways, right? Can you reflect a little bit on how it’s changed you, emotionally and spiritually for the better?

Antonio Iannella 1:01:42
Yeah, spiritually, I feel like I’m a little bit more at peace with who I am, and I think that’s come with having the break released in terms of trying to keep up with society stepping outside, and I use this reference where I was no longer on this speeding train, I’m on the platform and watching everyone just flash by. And at the beginning, that was horrifying, but then I began to appreciate it that I could I had time. Time so valuable, everyone’s so busy and no one has time. Everyone says ‘I’m sorry.

Antonio Iannella 1:02:22
I’m so busy I didn’t have the time to do that, and I didn’t have the time to do this, and next thing, you know, five years have passed and you’ve not done anything because you didn’t have the time. So I began to see that as a bit of a reward. The analogy I use is it was like the golden ticket behind the adversity, the silver lining, and that’s where it changed me spiritually. I began to enjoy that free space, that free, conscious space where I could just think and create and write and make music.

Antonio Iannella 1:03:03
Line the sun and spend, you know, two hours of my morning sitting on outside and the grass and just things like that. I began to see that so much value in that. So that’s where that changed for me, that spiritual, emotional level, but I also found it as well. I’ve always been a quite emotional person, but I also have found that sometimes my emotions can get away from me, like I see things that are painful, especially when others are going through difficult times, and then I find that hard to process.

Antonio Iannella 1:03:37
Because, you know, I think it reflects on having been through that hardship that resonates so that empathy, empathy. I try these techniques on ‘Okay, don’t cry, don’t cry, don’t and I try and squeeze it up and suck it in and then, like I had this friend, and she’s the sono. I told her about it, she’d say ‘Just cry if you want to cry, don’t why hold it back for and I guess you know society, many boys don’t cry, and we have that. So yeah, that that’s changed me a lot. Yeah, so the emotional stance and spiritual sense, and obviously, also the physical sense.

Bill Gasiamis 1:04:23
You’ve earned, the ability to cry at a drop of a hat for no reason if you feel like it, I am, I do, and I get teased like my wife tears me, and it’s all part of the whole thing, right? Oh, are you crying because your team won a game or lost a game, or what the hell like. You know, she’s like and and it’s what it is, I think for me, a lot of the time, it’s like joy expressed outwardly in every way, right? It’s like, it’s not sadness. When I cry, everyone asks me. Presenting my book in the book launch, I wasn’t crying. I was trying to present it to 40 people, right?

Bill Gasiamis 1:05:09
I was trying to have this 20 minute speech and talk about my book and all that kind of stuff. I wasn’t crying out of any anything other than like, pure, unadulterated joy.

Antonio Iannella 1:05:18
Yeah, elated.

Bill Gasiamis 1:05:20
Yeah, and there was so much of it that I cried four times during the during the presentation in 20 minutes, that’s like ‘Oh my god. It gets in the way, it’s getting in the way, but it’s also part of it. Like, you can’t, I can’t. I couldn’t have done that without the crying experience, it’s just gonna have to what do you do?

Antonio Iannella 1:05:43
I bet you is self critical more than anyone else judged you by that everyone else.

Bill Gasiamis 1:05:49
Correct, and I’ve stopped being anyhow, right, like I’m no longer self critical about it, but I am still all right, you get over it now, because you got to finish your presentation like it’s business. You know, move on. So there’s a bit of that, it sounds like you’ll had a completely new perspective on life, right? Things are you see things totally different from Antonio at 38.

Antonio Iannella 1:06:15
Yeah, I do. What I have really enjoyed is the pre-Antonio, the person, not so much the years leading up to the stroke, but maybe when I was in my 20s, and I was working in as a musician, and living that, having that perspective of, you know, just everything was about creativity and and and just in the moment of enjoying the craft. And it’s a kind of a form of yoga, it’s kind of like meditation, because you It’s what it’s those moments where you just completely filled in the moment.

Antonio Iannella 1:06:51
And it’s like when sportsmen, you know, you some of the great sportsmen, you watch them play in the you know, they’re just in the moment, they’re not thinking about something else, and that’s sometimes when they get into that flow state, that’s when they can play that their greatest and that’s the same with music. It’s just all creativity and having gone through a stroke and enabling me to get back to that, that’s been a massive growth period for me.

Antonio Iannella 1:07:18
So I feel like I’m back on track to who I was, for a little while, I went off track, and now I’m back, and that’s why they’re still saying that full circle, that’s what I mean by that.

Bill Gasiamis 1:07:30
In the previous interview that we did, I never used to ask these questions, but now I ask probably, in the last six months or so, I’ve started asking these three questions from everybody who I interview, who’s a stroke survivor. So I’d love to know what was the hardest thing about stroke for you.

Antonio Iannella 1:07:50
The there was a few episodes. I think one of the most scariest was the radiation treatment. The whole process of having my brain fried by radiation was quite frightening, that it made me feel quite alone. Because you you’re going through this experience, or while I was going through it on my own, and you rely on doctors and to advise you, and they don’t, do you know? And there was always that cloud of we don’t know, they couldn’t just give you a straight answer.

Antonio Iannella 1:08:21
This is what’s going to happen. To say you’re going to say you’re going to feel so there was that that was quite scary moments, difficult moments, if you asked there was that. There was the that time in ICU, not knowing whether I was going to survive, and then learn, as you go through those early stages, and learning about stroke, and you’re hearing, you’re reading some stuff about statistics and how many people survive and how many don’t, and that’s frightening.

Antonio Iannella 1:08:47
And then there’s and then, yeah, those few episodes are having an angiogram. Have you had an angiogram? That was really horrible.

Bill Gasiamis 1:08:59
That came out really emotional out of my one, really emotional.

Antonio Iannella 1:09:05
I ended up having three, and I really didn’t enjoy them. But sometimes you know what you’re in for, like, you know, especially after my first one, and then I had a second, a third, I knew what I was in for, but I kind of went in with that mindset of for it, right? Just bite down and just get through it.

Antonio Iannella 1:09:25
You’ll get out the other side, and you just go in there, like, holding on for dear life, and all right ‘This hurts like hell, and, oh yeah, I’m gonna vomit. And then you’re okay, and now later you’re okay, you’re coming too. So that’s kind of how I dealt with those experiences.

Bill Gasiamis 1:09:42
Now I remember the angiogram going and getting prepared for it. So they were preparing me for an angiogram for about five days. So what would happen is morning of day one, no eating, etc, from the night before you’re going in for an angiogram. Okay, cool. So I’m waiting, waiting, waiting, waiting, waiting. So one emergency after the other, after the other meant that I get kept putting, kept getting pushed back, and I didn’t have the angiogram. So I’d go from the night before dinner, the night before to any time that the next day, you know, almost 24 hours with no food.

Bill Gasiamis 1:10:22
And I’d be starving and thirsty, and I’d be losing my mind, and they’d be going to me now, you’ll be going in soon, you’ll be going in soon, and then I’d be going what we missed the window. You’re not going in today, go and get something. And then I’d be gorging, and then the next day, and then the next day, they did it for about three days or four days in a row, and then eventually I had the angiogram, and they come in, they tell you, it’s going to go in through one of your main veins.

Antonio Iannella 1:10:51
Aorta, goes in through your aorta from your groin, through the main the aorta is the main vein that feeds blood to your heart and your brain.

Bill Gasiamis 1:11:03
And then it’s like ‘Okay. And then they squeeze the dye, or whatever it’s called, the contrast.

Antonio Iannella 1:11:13
Oh my God, that’s horrible, did you feel dizzy?

Bill Gasiamis 1:11:15
Yeah I felt dizzy. I saw actually, like, sparkles, like, fireworks going off in my head, like it was intense.

Antonio Iannella 1:11:24
Yeah I remember that feeling.

Bill Gasiamis 1:11:25
I could actually see it in my eyes, I could see it in my eyes that fireworks were in my eyes. In the room while my eyes were open, there was just my whole vision field got overtaken by sparkles or fireworks.

Antonio Iannella 1:11:39
You just, it’s like you just lose complete sense of self. I remember that just feeling like you’re in this dark hole and you don’t know what’s going on, and you spit in, yes, really quite a horrible feeling.

Bill Gasiamis 1:11:52
And then the nurse later in recovery, holding your artery for what felt like an eternity, because they once they take it out, they gotta hold it and close it up, make sure that it seals, right? Yeah, so that you don’t bleed out. Because they tell you ‘Sorry, we’ve gotta do this now for the next x time. I don’t, I can’t remember what it was like a long time, and the story going, if we don’t do it, you could bleed out and die. And I’m like ‘Okay, I didn’t say, don’t do it, go for it, you guys do whatever you have to do.

Antonio Iannella 1:12:32
Well, that’s a quite a big build up three days to the mine was only one night, only one day, 90 for a day and then, that’s quite 12 hours or something I had to fast for.

Bill Gasiamis 1:12:45
So they got me, I’m all wound up over it every day. But anyhow, what’s something that stroke has taught you?

Antonio Iannella 1:12:56
I think I’m still learning, and that is to kill the effing out, because, like, they were talking about this briefly, about publishing a book, the amount of work involved, and all the boxes you got to tick and make sure you got this right. And they got so stressful, and I’ve got it, it’s done now, and it’s published and I kind of woke up today, and I was talking to a friend who lives overseas, and she’s going through some hard times, and I just went that stress was just, why do why do I do that for? Why do I stress myself like that for.

Antonio Iannella 1:13:34
Because, you know, you’re going to get to the other side. So I think I’m still learning that, but that’s a massive learning curve in in generally, in life, is just the children chill out and, you know, try not to let those things that you know, because I think it’s been a psychologist have said something like 92% of our fears and thoughts and worries don’t even come true surface. So, you know, that’s what I found.

Bill Gasiamis 1:14:03
I’ve been learning, that’s a good one. What do you want to tell other people who are listening all stroke survivors listen to this podcast, like, what do you want to tell them about your journey, about your experience, about anything that you just feel is going to be valuable.

Antonio Iannella 1:14:24
I think what I would say is, you know, through my own experience, and everything I talk about is through my own experience, and for everyone, it’s different, but through my own experience, what has helped immensely is finding some kind of purpose, and another thing that helped was because all the recoveries built up around trying to get back to who you were trying to recover, recover, recover. And I really think that I until I let go, that I really. Start living so that’s really but I’m not saying that you should not try and get back to who you were in terms of with your recovery.

Antonio Iannella 1:15:09
Statistically, something 88% of people who have strokes lived with lifelong disabilities. So there’s that 12% whoever, whatever happens to them that I don’t know, but the 88% we are solely focusing on trying to get them back to who they were. So that’s an awful amount of people who are not achieving that. So I think maybe just trying to find something for yourself that brings you joy and wakes you up in the morning, and it enables you to not feel like you’re a victim.

Bill Gasiamis 1:15:43
Yeah, that’s cool. And purpose is not head-based, right? It’s not, you’re not going to work out what your purpose is in your head. It’s something that you gotta do. It’s about what you love to do, or what connects you to other people, etc. For you, your purpose, what is it?

Antonio Iannella 1:15:58
It was really just creativity, spreading, spreading joy. I think, through my own story and my own creative advantage, because a lot of the things I create, music, writing, it’s all related to, I guess, making people feel like I’ve been able to do it, and I have a disability and I have limitations, but I’m have still been able to do it. So the general message, that’s takeaway from that is, there are you can still do things. It’s just a hard stock to try and work out what that is and how to do it, but it’s possible.

Bill Gasiamis 1:16:37
And then purpose kind of gives you meaning, right? Meaning in life.

Antonio Iannella 1:16:40
Yeah, and it doesn’t have to be like, all of a sudden you’re going to go on Mount Everest. It could be such the smallest little thing you might like scrapbooking, or you might like, you may have been a complete football nut, and now you can collect statistics and create some kind of information. I know you just, you need to really just find something to do, and because, you know, everyone needs purpose, it’s the thing that drives us as humans and beings.

Antonio Iannella 1:17:08
Why do we go to work? Because ultimately, we have a purpose, and that is to bring money home and able to maintain lifestyle and pay our bills and raise our family. But that’s the purpose, if you remove the purpose problem done, we would go to work. What would be the purpose? So we need to remove that, I feel, remove that, and just do it solely because it’s something that brings you pleasure, joy.

Bill Gasiamis 1:17:34
Yeah, beautiful. Show me the book again, and while you’re doing that, where can people get a copy.

Antonio Iannella 1:17:42
This is the book. It’s the easiest way to find it is on Amazon. If you go straight to Amazon and just typed in Saigon Siren, it would just bring the book straight up. That’s the easiest way to find it, but yeah, there I have also built a website, so that’s another way you get and through the website, you’ll be able to listen to music and see some photographs and video of the trip in Vietnam and some of the journey, the writing and stuff like that.

Antonio Iannella 1:18:15
There’s a couple of sample chapters on my website, so if you know, want to sort of get a feel about what the book is, how it’s written, the voice, the tone, you’ll get that through those chapters. They’re the best ways to connect with it.

Bill Gasiamis 1:18:30
Awesome and what is the website?

Antonio Iannella 1:18:35
It’s just my name, so it’s antonioiannela.com.au, yeah, like said, If you Google just recently, the website’s only gone up about a month ago, and I’ve been learning about SEOs and all that, and I discovered if you type in Saigon siren in Google, it’ll bring up my website in that search, it’s like in the listing. So therefore you’ll be able to and I spent a lot of time with a good mate of mine building a website.

Antonio Iannella 1:19:06
It’s very immersive, there’s a lot of pages, you’ll see my recording studio, lots of the music that I’ve created over the years past, pre stroke, post stroke, been quite a few projects. Some of the the writing and it’s been a lot of fun putting it all together, a lot of stress, a lot of hard work, and my me and my best mate, Rick, we’re going to kill each other on one point, but we got through that. Let’s come together.

Bill Gasiamis 1:19:31
That’s awesome, man. The links will be in the show notes anyway, for people who can’t remember that or have access to recoveryafterstroke.com/episodes, that’s where you’ll find Antonio’s episode, and then from there, they can reach out to you directly, and they can have a conversation if they need to mate. It is my absolute pleasure to have you back on the podcast to be helping you launch the board is something that is a great honor for me.

Bill Gasiamis 1:20:03
I am so excited that you’ve got there, and I witnessed the majority of your recovery from a distance, but you know, through regular updates and conversations and that. So I really want to just say congratulations on well done. It has been a massive undertaking to get to release date, because I know what came before the book. So thank you. It’s an absolutely amazing thing, and it’s the whole purpose this podcast exists because what I want to show other stroke survivors is the fact that the journey might be long, but things can get better.

Bill Gasiamis 1:20:43
Things can improve, great things can come of it. You can overcome so much more than you think that you can overcome. You’re a perfect example of that, you’re leading by example, you’re such a great example of that. Thank you, and just congratulations.

Antonio Iannella 1:21:01
Thanks, man. I’d also like to say, you, people like yourself that are doing what you do and making us strokes have always feel connected and introducing us to a world of we know such a such a minefield when you have your stroke. And I remember my early days and and how difficult it was, and now with some of the stroke community groups that I’m involved with and some of the posts that I read about people who are just entering into stroke.

Antonio Iannella 1:21:30
And I just I read them with such a heartache, you know? And so I know what that’s like, but people like you bring all of that together and just make you know that accessibility for all of us to just connect and go ‘Hey, you know there’s, there’s a way, there’s a way that we can make it work. So good on to you. Good to you, mate, good for you.

Bill Gasiamis 1:21:49
That brings us to the end of another episode, and Antonio’s journey of resilience, recovery and self discovery in life after stroke is a powerful reminder that even in the toughest times, there is hope and the way forward. His courage in adapting to life after stroke and his insights into emotional growth are truly inspiring. If you’ve found this episode valuable, or if the podcast has been a source of support in your own recovery journey, please consider supporting us on Patreon, at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:22:27
Your support enables us to keep bringing stories like Antonios to stroke survivors and caregivers around the world. Every contribution makes a difference, and I’m deeply grateful for each one a special thank you once again to our newest supporters. JK, Jolene Oh and Cecilia, your support truly helps make this podcast possible. Thank you to everyone who has left a review on iTunes or Spotify Your feedback helps others find the show and creates a community of encouragement and resilience.

Bill Gasiamis 1:23:00
If you haven’t yet, please consider leaving a five-star rating or sharing your thoughts, it means so much. Thank you for joining me today, and I look forward to seeing you in the next episode.

Intro 1:23:13
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:23:43
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The post Antonio Iannella’s Journey: Life After Stroke – Overcoming Challenges Abroad and Finding Purpose appeared first on Recovery After Stroke.

Surviving an Ischemic Stroke: The Connection Between Ischemic Stroke and Hypertrophic Cardiomyopathy, and How Self-Care Can Help

An ischemic stroke is a life-altering event that occurs when a blood clot blocks the flow of oxygen-rich blood to the brain, leading to brain cell damage or death. It is the most common type of stroke, accounting for nearly 87% of all stroke cases. One lesser-known contributor to ischemic strokes is hypertrophic cardiomyopathy (HCM), a genetic heart condition that can increase the risk of blood clots.

But, how does hypertrophic cardiomyopathy lead to ischemic stroke? And what self-care steps can individuals take to manage this condition and reduce the risk of stroke?

Hypertrophic cardiomyopathy (HCM) is a genetic heart disorder where the heart muscle becomes abnormally thickened. While some people with HCM may experience no symptoms, others can develop serious complications such as arrhythmias (irregular heartbeats), heart failure, or the formation of blood clots.

The thickened heart muscle often affects how the heart pumps blood, leading to turbulence in blood flow, which may result in clot formation. If these clots travel to the brain, they can block an artery, causing an ischemic stroke.

Individuals with hypertrophic cardiomyopathy are at a higher risk for ischemic strokes due to several factors related to the condition:

1. Blood Clot Formation: As blood struggles to flow properly through a thickened heart, clots can form in the heart chambers, particularly if arrhythmias like atrial fibrillation are present.
2. Atrial Fibrillation (AFib): HCM is commonly associated with AFib, which causes the heart to beat irregularly. These irregular beats may cause blood to pool in the heart chambers, further increasing the risk of clots.
3. Reduced Blood Flow: Hypertrophic cardiomyopathy can impair the heart’s ability to pump blood effectively. Inadequate circulation increases the chances of clot formation, which can eventually lead to ischemic strokes.

Understanding this connection between hypertrophic cardiomyopathy and ischemic stroke is crucial, but more importantly, managing both conditions through self-care is vital for preventing stroke and maintaining overall health.

Managing hypertrophic cardiomyopathy effectively can significantly reduce the risk of ischemic stroke. Here are some key self-care strategies for those living with HCM:

1. Regular Cardiologist Visits: Routine monitoring is essential to manage HCM. A cardiologist can track heart function, identify any irregularities, and adjust treatment plans as necessary. Monitoring heart rhythm with devices like a Holter monitor can detect arrhythmias early, allowing for timely intervention.
2. Medication Management: Many people with HCM are prescribed medications to manage symptoms and reduce stroke risk. These may include:
   • Beta-blockers or calcium channel blockers to improve heart function and reduce symptoms like shortness of breath.
   • Blood thinners (anticoagulants) to prevent blood clots from forming, especially if atrial fibrillation is present. It’s crucial to take medications exactly as prescribed and consult your doctor before making any changes.
3. Adopting a Heart-Healthy Diet: A well-balanced diet can reduce the overall stress on the heart. Focus on foods that are low in sodium and rich in fruits, vegetables, whole grains, lean proteins, and healthy fats. Limiting alcohol and caffeine consumption is also recommended, as these can exacerbate arrhythmias.
4. Regular Physical Activity: While heavy exertion is often discouraged in individuals with HCM, regular moderate exercise can improve heart health and overall well-being. Activities like walking, swimming, and yoga are excellent options. Always consult your healthcare provider before starting any new exercise regimen to ensure it’s safe.
5. Managing Stress: Emotional and physical stress can trigger arrhythmias or worsen HCM symptoms. Stress management techniques like meditation, breathing exercises, and mindfulness practices can help reduce stress levels, improving heart health and overall well-being.
6. Sleep Hygiene: Getting adequate, restful sleep is essential for heart health. Individuals with HCM should prioritize good sleep hygiene, including maintaining a regular sleep schedule and creating a relaxing bedtime routine. Poor sleep can exacerbate heart conditions, increasing the risk of clot formation.
7. Monitoring Symptoms: Self-awareness is key in managing hypertrophic cardiomyopathy. Pay attention to symptoms like shortness of breath, chest pain, dizziness, or palpitations. If these symptoms worsen or new symptoms develop, it’s important to seek medical advice promptly.
8. Atrial Fibrillation Management: If AFib is a complication of HCM, managing it carefully is crucial to reducing the risk of ischemic stroke. Medications, lifestyle changes, and even surgical options (like catheter ablation) may be recommended by a cardiologist to keep arrhythmias in check.

For individuals with hypertrophic cardiomyopathy, preventing ischemic stroke requires a proactive approach to heart health. In addition to self-care practices, there are several other preventive measures:

• Regular Blood Pressure Monitoring: High blood pressure can further strain the heart, increasing the risk of stroke. Monitor your blood pressure regularly, and take steps to keep it within a healthy range through medication or lifestyle adjustments.
• Quit Smoking: Smoking is a significant risk factor for both heart disease and stroke. Quitting smoking dramatically reduces the risk of ischemic stroke, especially in people with underlying heart conditions like HCM.
• Stay Hydrated: Dehydration can affect blood pressure and increase the risk of clot formation. Be sure to drink enough water throughout the day to keep your blood flow steady and your body functioning optimally.

Managing hypertrophic cardiomyopathy is essential for reducing the risk of ischemic stroke. By understanding the connection between these two conditions and taking proactive steps through self-care—such as managing medications, maintaining a healthy lifestyle, and monitoring symptoms—individuals can significantly improve their heart health and reduce their risk of stroke.

Hypertrophic cardiomyopathy doesn’t have to lead to an ischemic stroke. With the right care, attention, and prevention strategies, those living with HCM can lead a healthier, more fulfilling life while minimizing their stroke risk.

Discover how a near-death ischemic stroke caused by hypertrophic cardiomyopathy led to an extraordinary recovery journey filled with resilience.

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Highlights:

00:00 Introduction
01:55 The Early Signs of Stroke
06:38 The Out-of-Body Experience
13:07 Dealing With The Post-Stroke Deficits
17:13 The Survivor’s Guilt
27:41 Dealing With Emotions After A Stroke
35:16 The Pseudobulbar Affect
45:24 Changing Lives
55:41 Developing Empathy After A Stroke
1:03:33 Having The Time For Reflection
1:12:26 All Because Of The Stroke
1:18:14 The Hardest Thing About The Stroke
1:20:55 The Lessons From The Stroke

Transcript:

Bill Gasiamis 0:00
Hello everybody, and welcome to episode 325, of the recovery after stroke podcast. I am your host, Bill Gasiamis, and today I’m excited to bring to you the incredible story of Roderick Jefferson, a keynote speaker and a stroke survivor who faced a near death ischemic stroke caused by hypertrophic cardiomyopathy. In this episode, Roderick takes us through his remarkable journey how he flatlined during his stroke, the profound experience of seeing his late mother and the miraculous recovery that stunned the doctors.

Bill Gasiamis 0:40
Roderick opens up about the physical and emotional challenges he overcame, including battling aphasia, regret, regaining his motor skills and confronting survivor’s guilt. His story will resonate deeply with anyone navigating stroke recovery and inspire those looking for hope. Now, just before we jump into roderick’s journey, I want to take a moment to thank all of you who support the podcast. A special shout out to those who leave comments on the YouTube channel every day.

Bill Gasiamis 1:13
You’re amazing, your stories insights and support creates a community that uplifts and encourages others. I’d also like to thank the nearly 50 incredible people who have already left five star reviews on Spotify, and the many more who have done the same on iTunes. Your reviews help other stroke survivors find the show, and they mean the world to me. If you haven’t yet, please consider leaving a rating or review as it truly helps others find this valuable content.

Bill Gasiamis 1:45
Roderick Jefferson, welcome to the podcast.

Roderick Jefferson 1:48
Thanks for having me, I appreciate it.

Bill Gasiamis 1:51
Absolute pleasure, tell me a little bit about what happened to you.

Roderick Jefferson 1:55
So my stroke was about two and a half years ago. I am a keynote speaker. I was down in Los Angeles. I live up in San Francisco, Bay Area. So I was down in LA on a site visit, just checking out the place, getting ready for a keynote, and then I felt myself feeling really, really tired, not like I’d been working out too much, but a level of tired that I just never felt, and so we went to dinner, had couple cocktails, and felt like, other than that, a normal day.

Roderick Jefferson 2:28
The problem was, it was anything but normal. So I went to sleep as normal, woke up the next morning. So every morning I meet up with my wife, and we kind of sync on calendars, right? What’s going on with you? What’s happening with me? And that day, she said, wait a minute, something doesn’t sound right. Now, inside of my head, I heard a conversation like we’re having right now. What she heard was gibberish, and so thankfully, friend of hers had a small TIA recently, and so she walked me through the protocol.

Roderick Jefferson 3:01
And she, you know, What’s your middle name? I could remember, count to 10, that’s easy, 1, 2, 12, 27, 58 and then she said, say your ABCs. I was like, You’re kidding, right? She goes, No, say your ABCs, A, B, L, Q, W, X, Y, H, and she said, Go in the bathroom. Look at your face. Is your face drooping? I said, No. She said ‘I need you to call, and I had my team with me, said ‘I need you to call, Tim, you’re having a stroke.

Roderick Jefferson 3:32
They rushed me over to the emergency room, they do the protocol, unfortunately, it was too late for me to give the shot to break up the clot, and it turned out that I had a sleep stroke the night before. Now, bear in mind, there’s a 98% fatality rate when that happens, so I am now part, proudly, part of the 2% club, and I’m still here.

Bill Gasiamis 3:57
That’s.

Roderick Jefferson 3:58
That’s where it got interest.

Bill Gasiamis 4:00
Sensational to here, man.

Roderick Jefferson 4:02
Yeah, that’s where it got really. interesting, because I was flying back home that day from LA back up to San Fran. The problem was, when I got in the plane, the cabin pressure and the altitude I passed out. I got off, my wife and son were waiting for me, they rushed me to the emergency room, and I don’t remember the first three days when I was in the hospital, but I remember my wife saying, there was no reason he should be alive with that altitude and also cabin pressure, I don’t know how he’s still alive.

Bill Gasiamis 4:37
How do you get your head around that? Okay, so, you know, I’ll give you a little bit of a I’ll try and set the scene. Some people, they get into a car, they have a near miss. Do they take it as if they’ve already had the car? Lesion. They lose their marbles against the other person. It can become like a massive thing. Others people have a other people have a near miss, and they go ‘Oh, we missed everything’s all good. How do you go through those motions of trying to wrap your head around this near-miss, and the fact that you and I were talking about this right now?

Roderick Jefferson 4:50
I think if it would have just been that being the near-miss Bill, I would have been okay-okay, things are happening. I’m at a high level of stress, I know what’s going on, but when I got back to actually being clear headed somewhat again. I now stuttered aphasia, really bad, I was having a hard time focusing my eyes, I couldn’t remember what had even happened and that I was even on a business trip, and so then one night, my wife was and it was during covid, so my kids couldn’t see me.

Roderick Jefferson 6:02
All they saw was, you know FaceTime. My wife’s going home, and she’s crying. Like, is, take me, like, two hours to get a sentence out right? Like ‘babe, what’s wrong? And she said ‘I’m going home, and I don’t think I’m ever going to see you alive again. I was bad, really bad, because I was progressively getting worse and worse and worse, they now have me on full blown oxygen, I’m having a difficult time swallowing, and then that night, I hear Code Blue, and machines start going off, and everyone’s running into my room.

Roderick Jefferson 6:38
Now suddenly I go from Beep, beep, beep, beep, really fast, dude, beeeeep, I’m flatlined, I’m dead. Wasn’t near death, I was flatlined. So I float up to the corner of the room, I’m looking down on the doctors and nurses, they’re pulling fluids out of me, they’re doing chest compression, and I look to my left, and it’s my mom. My mom died in 1999 so now I’m not scared. I’m actually oddly at peace like I’d never felt before, I wear these glasses because, you know, getting gray and catching up in years.

Roderick Jefferson 7:17
I can’t see without these things on, I didn’t have them on that day, but I saw the most vibrant blues and greens and oranges and yellows, and I said to my mom ‘Okay, Mama, I guess I’ve done everything that I can, I’m ready to go. And she looks at me, and I remember exactly what she said. She said ‘No, baby, I was sent to tell you that you’re going to be okay and they’re going to figure this out. Now I’m sucked back into my body. I’m lying flat on my back, my chest is killing me because of the chest compressions, and she’s gone.

Roderick Jefferson 7:52
Now I’m still flatlined, but I can hear muddled, you know, kind of whispering and mumbling going on with the doctors, and they’re all trying to and suddenly I hear the one word that no one ever wants to hear Bill ‘Clear. I went ‘Oh no, this is not going to be good. Now bear in mind, I’m still flatlined at this time, but I can hear things, and it was kind of like when you go to the dentist and they give you twilight, where you’re not all the way out, but you’re really not there either.

Roderick Jefferson 8:24
That’s how it felt, and so he yells clear, and I can hear, it sounds like sandpaper, and he’s rubbing the paddles together. Now he’s coming down to shock me, and suddenly I go from beep to beep, beep, beep, beep, beep, I’m back now. I’m literally in the room, I can see everyone, everything goes ‘What’s going on? He’s coming down to me. I grab one of his hands before he gets to me and shocks me, I still can’t talk, but at least I have enough, you know, grip, to grab him, and from there, now that I’m back, they went into a whole different protocol, like I’ve never seen.

Roderick Jefferson 9:02
So I know it’s a long time explaining. Now I’ll answer your question. How’d I get my arms around it? Um, there were a couple things that happened. One was I was still somewhat incapacitated, but when I could finally clear, I remember I prayed the same thing every single night, not may I get better? Can I get to this? Can I do that? I prayed, God just let me wake up tomorrow.

Roderick Jefferson 9:31
And from there, it changed, as I started to come back, speech therapy, physical therapy, occupational therapy, the whole nine. I’ve got 10 different neurologists, and they’re checking on me right? And it turns out that it has changed my entire life, and it’s my four F’s, Faith, Family, Friends and Fun, everything else doesn’t even hit my radar anymore. The way I think, the way I approach things, my level of temper, everything has changed from that day because I was brought back for what reason? I couldn’t figure it out, and I’ve given up on trying to figure out.

Bill Gasiamis 10:09
Let’s take a quick pause here, but we’ll be right back with more of Roderick Jefferson’s powerful story before we continue, I want to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. It’s filled with practical guidance and inspirational stories of stroke survivors who turned their adversity into an opportunity for growth, you can find it on Amazon or at recoveryafterstroke.com/book.

Roderick Jefferson 10:36
All I know is I am here to now share that story and also help others that they may not go through what I went through. And what I mean is having to learn how to use a spoon again, how to tie my shoes, how to button my buttons, all those things that we just take for granted, I don’t take anything for granted, we always say tomorrow’s not promised until you’re in a position where you really don’t have it tomorrow and you realize how amazing it is to walk across the room to the kitchen, to walk to the bathroom on your own, to be able to do what you do.

Roderick Jefferson 11:14
The worst part is by trade. I’m a keynote speaker. Imagine what that did to me, I stuttered so bad that I literally stopped talking, I went snow blind, I lost sight in my eyes, I lost the use of my left arm and my left leg. Had to work through all of that, and I am incredibly blessed to still be here. And like I said, I don’t even try and figure out why anymore, I just appreciate the fact that I’m here.

Bill Gasiamis 11:42
Wow, man, I love it. So you didn’t have the near-miss, you actually had the collision, and then you’re dealing with the aftermath and that whole floating above yourself and looking down and paying attention to what’s happening, and seeing your mom, and all those things we hear about people talking about that regularly, you hear about that you can never. You can never what’s the word? Relate to it, you can never understand it, you have to take those people for their word, and they’ve got no reason to be lying, but then.

Roderick Jefferson 12:23
You can’t make that up, no one’s that creative.

Bill Gasiamis 12:23
And then you experience it, and then it’s back into the world, and now, from that state of euphoria, seeing your mom being guided, now you’re back to Earth, and now you have to get through it well, not on your own, but without the spiritual connection from Mum, the way that she was to bring you back from where you were. So now you’re back, and now it’s still covid, and you’ve come you’ve come around, and they’ve kept you alive. So then what happens? Then, like, how do you navigate the next part of that awake time?

Roderick Jefferson 13:07
Well, the next part was all about, how do we now start getting the use of my faculties again? So I’m in the hospital for an extended stay now I go home and I’m still stuttering really bad, and still having a difficult time seeing, still not fully using all of my limbs. I remember it was a Saturday, matter of fact, it was November 20, because it was my son’s birthday the next day, and we were watching, listening my case, to an American football game, and I just got the worst sharp pain in my head I’ve ever.

Roderick Jefferson 13:48
Felt like someone was driving nails into my head, and I was screaming and literally on the ground crying that it was in pain so bad. I’m a big guy, 64-65, right? I was in a fetal position, then all of a sudden, it felt like a wave hit me of energy. I look up at my wife and my daughter, and I can see her, first of all, and I said ‘It’s clear as you’re hearing me right now, I’m not sure what happened, but I feel like myself again.

Roderick Jefferson 14:26
Where’d that come from? So they rushed me back to the emergency room, thinking maybe an aneurysm had burst, or something’s going on in my brain, and they took me back to the same hospital that I was just in because we wanted to get film of now post versus what I look like when I was in the hospital, they took them and they superimposed them on top of each other, they were carbon copy. So physically, nothing changed in my brain, but somewhere in the depths of it, my aphasia was gone, there was no stutter, I was able to move around again.

Roderick Jefferson 15:05
So I now am writing a new book called ‘The Miracle Man,and telling the entire piece. But now where it all started was twofold, I was an executive in corporate and traveling a lot, moving around high level of stress, and I became comfortable at that red line level of stress, and then it turns out that I have something called hypertrophic cardiomyopathy, where the normal heart squeezes. Now no blockage bear in mind, but the normal heart squeezes at about 55% to 65% when it gets down to 20% to 20% cardiac arrest, you’re gone.

Roderick Jefferson 15:47
That day when they rushed me into the hospital, I was at 22% of heart function after I got off that plane, I don’t try and figure out why me? Why did it happen to me? Why am I able to bounce back? I just roll with it. And again I have a whole I’ll call it a fixation, an addiction, almost to being able to help others not get to this level, and for those that are there to know that you can get through it. Now, I was in a bunch of support groups online that I had to drop out of because I started getting survivor’s guilt.

Roderick Jefferson 16:25
These are people two years later ‘Hey, I just used a spoon for the first time, I just walked 10 steps. And for me, I was like ‘I’m about to get on a flight and go to Amsterdam and do a keynote speech. Right? Now, on the plane, that’s when the survivor’s guilt kicks in lik ‘Okay, these people are far worse than me, because when you think stroke, you think Stroke-Stroke, they may never bounce back, they may never get back.

Roderick Jefferson 16:51
For me, it was about six months, and I felt like I was probably 90% back. But also bear in mind, I take 14 to 16 pills per day of medication just to stay balanced, I don’t take those, I don’t sound like the guy that you’re talking to right now.

Bill Gasiamis 17:13
Okay, let’s talk about the survivor’s guilt. So I experienced that, and it’s a common thing, you hear a lot of stroke survivors talk about that when you experience survivor’s guilt, like, what are you guilty of? What is the underlying emotion that you’re grappling with? For me, it was, Why am I so special? Why did I survive and they didn’t? Or why did I get away with the way that I did? I’m still living with deficits, but why? Why are mine? We’ll call it on a lower scale of deficit compared to other people.

Bill Gasiamis 17:54
And there was a lot of why questions, like, it was, Why me? But not why me? Why did this happen to me? Poor me. It was the other why me, which seems like it’s a it’s a positive questioning of the experience, so that I can then transform it into something beyond a bad experience, and like you make something out of it, like use it as a as a springboard to something else, something better. What’s your version of the survivor’s guilt-like?

Roderick Jefferson 18:32
Dude you’re spot on, It was never poor me, why did it happen? Why’d I have to go through this? Why’d I have to fight through it? It was, Why was I the chosen one? Why are these people still struggling and realistically? May never get back to quote, unquote, normal, if you will. It was also, how did it happen so fast? Now you would think someone that that has a spiritual background and relationship, that I prayed my prayers were answered.

Roderick Jefferson 19:02
‘Okay, great, now that should have been a phenomenal testimony, if nothing else, to be able to go out and tell the world that I don’t have to, whether it’s God, a higher be, or whatever it is that you believe in, to go out and put that story out, which I was doing, don’t get me wrong, but it was kind of half hearted at first, because it was yes that did happen. Yes, it did validate that there’s a higher being. Yes, I was spared. But then there’s also the rational side of humans, of ‘Why me? Right?

Roderick Jefferson 19:35
And again, I had to drop out of the the support groups, because I was healing at such a rapid pace that I actually was put into a study here at Stanford University with 11 different neurologists that had never seen it move as fast as far as I had done again, something else to your point, you would feel like should be positive, I was finding a hard time finding the positive, I was positive that I’m still alive and happy and thankful, but I could not rationalize ‘What’s so special about why me? and why are those poor people? And I didn’t mean this negatively or talking down.

Roderick Jefferson 20:18
It was, why are these poor people going through such a difficult, extended, elongated, and in some cases, lifelong, these people are never going to get back to what they were before and not I won’t even say normal, just where they were, where in this conversation with you and I, and I’m sure you’ve heard the same thing, people say you had a stroke. I would never know if you didn’t tell me, and then, in the mind, you kind of go ‘Why? Why me? I don’t want to give it back. Don’t get me wrong, I’m not tempting fate, but it’s something where, rationally, there’s really no explanation.

Bill Gasiamis 20:18
Well for me.

Roderick Jefferson 20:20
You feel the same?

Bill Gasiamis 20:21
I did, I had all of that, and this is where it’s evolved for me a little bit, and the guilt was, you’re not doing enough, you’re not doing enough, you’re doing you’re half assing it. You could be doing more and in a constructive way, in that a friend of mine, the podcast exists because a friend of mine put it in my head that planted a seed like because I was doing a lot of research to find out how I’m going to heal quickly, how I’m going to get better I’m going to get back to life.

Bill Gasiamis 21:41
How I’m going to recover my cognitive function and my ability to type and write and participate in life? Right? So I just My life’s completely different, I changed everything about the Bill that existed before, all that stuff, and then he kind of planted that seed is you’ve learnt a lot. He said ‘What do you know about stroke? And I could talk for hours about, what do I know for stroke? About stroke? What do I know about recovery? What do I know about mindset? Emotions?

Roderick Jefferson 22:13
What’s an ischemic? What’s a hemorrhagic? I’m sure maybe you don’t understand exactly what’s going on.

Bill Gasiamis 22:20
You name it, right? And then I said to him ‘Well, I’d like to share that with people and coach people get through it. You know? And it whenever, even when I said that, I said it to the point of, I’m going to do it one on one with people in my local area, and he said to me, like, one on one ‘How many people are you going to reach like that? And I said ‘I don’t know, I don’t know how many people there are in my area that need that kind of support. He said ‘You know, there’s this thing called the internet, you know, you could do it online.

Roderick Jefferson 22:49
Really big, it’s going to catch on one day, Bill, it’s going to take off.

Bill Gasiamis 22:52
Yeah, and I’m thinking ‘I can’t see that, I can’t. I can’t visualize how that could possibly be a thing, but I just accepted what he said and just took it on face value, and we had the conversation, and the conversation ended, but that planting of the seed and then that feeling of you’re not doing enough ‘Why me? Why did I make it? Combined somewhere they kind of merged, and then the result was ‘Okay, you need to do this online, you need to create a podcast, you need to work out what the name of that podcast is.

Bill Gasiamis 23:26
You need to work out who your audience is, and you need to do that every single week. And that’s kind of now ‘The Why-me kind of now makes sense. It’s like ‘Ah, that’s why me, because I was supposed to do this, get through it, learn from it, share the learning, and then put it out there on a global scale, so people can download it on the internet, audio, video, transcribe it, so that everyone can get their hands on it. And then, when you when that idea of stroke becoming the best thing that happened to me enters your head.

Bill Gasiamis 24:10
What the next thing is that you have to do is you have to actually write the book about it. And when I reflect back on those 12 years that I’ve been through this journey so far, all that seemed to come very quickly on reflection. It’s like going going through childbirth for a woman, you know, my wife, would say, at the beginning, she said, I’m never going through that again.

Bill Gasiamis 24:31
Quickly, she forgets about how hard it was. All of a sudden, three and a half years later, we’re pregnant again, and then you go through it again. It’s painful again, and it’s like ‘Oh, this is how hard it was, Oh, that’s why we didn’t want to do it again, but we did it anyway, and now that’s what the book was. The book was a very difficult thing to do, now that I reflect on it, man, that was such a great experience. The podcast was seriously hard to start, and now the I’ve got momentum and a system in place, it’s really easy to do record an episode and get it up and running.

Bill Gasiamis 25:05
So it’s like, that’s why me, that’s why, because I had to find a way to reach these people that was beyond, beyond my capabilities and my skills in the past, and as a result of that, the guilt the survivors part, the guilt of that has dissipated, and it’s now I’m on purpose. I found the the meaning in my life, and I and I’ve transformed this whole experience from being something that happened to me to something that I all I do is I reflect on it as a something that I’ve experienced, but it’s not traumatizing me on a daily basis.

Bill Gasiamis 25:48
I see it in the past, and now, the stuff that I’m doing is kind of guiding people at the next level so that they can move beyond where they are, and I don’t know how long it’ll take for them. So what I’m doing is going, you know, just go on the ride, and as hard as it is, reflect back every once in a while to see how far you’ve come, so that you can get a little bit of it, so that, so that you can feel empowered to take the next hard journey, because there’s more hard journeys to come.

Roderick Jefferson 26:27
First of all, thank you for your ‘Why, and thank you for keeping this alive and sharing it with the world and starting the podcast and writing the book. Because to your point, there are a lot of people that you’re you’re going to touch, that you’ll never meet, but you may be the motivating thing that pushes them over the top. Maybe that’s your why is you’re supposed to be that conduit to show others what success looks like, and I don’t mean professionally or monetarily, like we always look at success.

Roderick Jefferson 26:59
But literally, the fact that you were back as close to quote, unquote normal Bill as you were before stroke, that’s tough though, because again, if you are the anomaly, are we giving people hope that they may never get to? Or is it really the folks like you and I that do get back and we show them, and we show them a level of determination and grit and persistency and drive that they may never had, and either way, I think it’s a huge upside, I really do. I have a question for you after your stroke?

Roderick Jefferson 27:41
First of all, where was your stroke located? And secondly, after it was over, did you have any difference in emotions afterwards? Because I know for me, every time I said I had a stroke, I broke into tears. I’m not a big I have no problem with crying, but it took me over and consumed me, because mine was in my speech center, which is right next to the emotion center. So your story I’d love to hear.

Bill Gasiamis 28:11
So, I had a hemorrhagic stroke a faulty blood vessel. It was four centimeters, about one and a half, two inches from the from the ear into the middle of the brain, near the cerebellum. So it kind of affects your balance area. And in order for them to get to it, when they operated, they had to kind of move out, out of the way all the other parts of the brain, so they’ve interfered with a fair amount of it to get into there. When I woke up, I had numbness on my left side after surgery, and that has never gone away.

Bill Gasiamis 28:44
That was that’s been there since 2014 and that was the main symptom when I realized that I needed to be in hospital, that was the main symptom that I was experiencing in total left side numbness. So the initial experience with the numbness came because I had a blood vessel burst and the and the clot in my head was initially small, probably about the size of a dime, so they’re able to settle it down, but then, as it bled a second time.

Bill Gasiamis 29:15
The amount of blood was about the size of a golf ball and sitting there in impacting all of those areas that you can imagine a blood clot that big would impact. So, that made me emotional, it made me angry ,it made me all over the place, and it impacted my cognition, my ability to remember things, to write, to focus, to begin and start a sentence, a whole bunch of stuff kind of went really really wrong. And then as other things sort of started to come back online, when the clock, because the clock was in there for about two and a half years, but forever decreasing in size.

Bill Gasiamis 30:00
Because it’s being absorbed and broken up by the body, and as it’s decreasing in size, more and more of my functions are coming back on, but the emotional part was still a little bit off, and I would find myself in a situation where I would be on stage for the Stroke Foundation, having to talk about my condition, so that I can set the scene, so that I can talk to the to the audience about how to prevent stroke. And then as soon as I mentioned, you know, there was a keyword that might come up out of nowhere that I mentioned, I would burst into tears.

Bill Gasiamis 30:34
And there was no controlling it like previously, where you could, you know, you could, you know, change your face, and you could breathe differently or whatever, and you could stop it from happening, and then it continued happening, and to this day, it still continues to happen. So now we’re talking about 12 years later. I did the book launch a few, a few months ago, and I had a presentation in front of about 35 people where I was going to talk about my journey, how the book came to be, etc, around about a 20 minute speech, I cried four times.

Roderick Jefferson 31:12
Wow!

Intro 31:12
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 31:42
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Bill Gasiamis 32:12
And it was so difficult to not cry, but I’ve accepted the fact that it happens, and when I do cry in that context, like it sucks the audience in even further.

Roderick Jefferson 32:27
Yeah, it’s crazy how that works, is it?

Bill Gasiamis 32:29
I have them in the palm of my hands.

Roderick Jefferson 32:30
Everybody’s on your journey, and they’re on the edge of their seats, and they’re they’re feeling sympathy and empathetic for you, and you’re like ‘If only I was good enough that I could have been here crying on demand, but that’s not what happened.

Bill Gasiamis 32:44
Not at all, right? And then, and then what happens is you get the message across. It’s more powerful, you know, really makes people sort of sit up and pay attention to the the the impactful nature of that, and part of the reason why I cried was because I can’t contain my excitement for being there, my excitement for people being in the room, my joy for being alive, I can’t contain my emotions because the journey that got me to a book launch has been so hard, arduous, difficult obstacles to overcome, and I’ve overcome them all, and still, there’s more to overcome.

Bill Gasiamis 33:27
And it’s like, I don’t know how to deal with all of that stuff, and I don’t know how Bill, the guy that I know before stroke, how that guy has found that within himself to get through all of that and be in that place, in that room, on that day after everything that he’s been through, I do not know those two people. They are two different people, and it’s overwhelming, overwhelming in a good way. So does that make you feel a little more?

Roderick Jefferson 34:06
Thank you for not feeling like I’m the only one going through this, right? And I’m sure there are a ton of us, but the similarities especially because we had two different types of strokes. Mine was ischemic, where the night, while I was asleep, as I said, a clot created in my heart floated up to my brain, lodged in the center of my speech center, and it just kind of went haywire and shut things down.

Roderick Jefferson 34:33
But the fact that we have a similar path, thank you for sharing that, because it definitely does give me an opportunity to see it through your lenses, and we’re seeing the same things, just from different angles. And so I was always wondering, Am I the only one going through this? Right there is and then I go to the stroke I go to Stroke Association to go and try and help, to speak for free, go and give back, I got nothing back from them, it was almost like we don’t want you to come help ‘We just want you to donate. And that infuriated me.

Bill Gasiamis 35:16
Okay, cool, right? So I get that a little bit too, right? And I’ll tell you my version of that. So firstly, you need to know there is a term for what we the emotional outbursts that we experience. It’s Psuedobulbar affect. It is very well documented, and people with neurological injuries experience it a lot. So Psuedobulbar affect, some people will have the crying version of it.

Bill Gasiamis 35:42
Some people will have the laughing version of that, where they laugh at in at times where it’s not appropriate. And it might be.

Roderick Jefferson 35:51
Yes, I didn’t get that.

Bill Gasiamis 35:52
Yeah, and it might be, even I’ve met people who have will cry at a funeral and sorry, will laugh at a funeral when they’re not meant to be laughing, but it’s that crazy outburst that they can’t control, so they have to make themselves scarce, they’ve gotta get out of there.

Roderick Jefferson 36:12
I think I’ll take the the crying type, I’m okay with that now.

Bill Gasiamis 36:17
It’s more endearing. So, there’s that now, with regards to the Stroke Foundation here in Australia, again, I’ve donated my likeness, I’ve been in TV ads, posters on the back of busses, they still have a online campaign where they use me as the face of the fast campaign, I presented for them, volunteered my time to present for them in the space of raising awareness about how to prevent stroke and how to recognize a stroke. Really cool things, right? All those things, but the challenge is that they are funded partly by the government.

Bill Gasiamis 37:06
And on the other side, they are funded by private donors, and their mandate is to run a scientific approach to preventing stroke, and that’s their biggest mandate. The other parts of stroke they’re not interested in, because they’re not funded to do that kind of work. So if I turned up and presented myself as somebody who would like to speak on their behalf, about my story that benefits them and me, and I requested payment or money for that, they wouldn’t be up for it.

Bill Gasiamis 37:50
I started my journey there, and then kind of found myself going, well, I could do all this on my own, I could, instead of run, put my time and effort into their organization who doesn’t have a mandate to support somebody like me, I could do this for myself in that and then not have to work within a mandate that doesn’t suit my desire and how I would go about presenting this now I’ve done 300 and nearly 10 episodes, something like that of a podcast.

Bill Gasiamis 38:31
If I was doing that for the Stroke Foundation, could you imagine what an amazing resource that would create for the Stroke Foundation, and they kind of have these little peripheral programs that they get a small amount of funding to create, but then the funding ends, and then they can’t continue it, so they’re very restricted with how they go about that. The next part for me is I wrote the book, and then I applied in a scientific way, I applied to present on my thesis. We’ll call the book a ‘Thesis’ for this particular scenario.

Bill Gasiamis 39:09
Which was the study that I did that found the 10 steps that people took that made them arrive to the point of saying stroke was the best thing that happened to them and that application that I put in was for the smart strokes conference, which is coming up in about two and a half weeks, and I was accepted to speak at the conference, It’s in Australia, it’s the smart strokes conference. A whole bunch of clinicians get together and they talk shop, and I’ll be there presenting my thesis for 12 minutes.

Bill Gasiamis 39:46
The idea, what I thought of how I developed the story, where I found my participants, what the outcomes were, the methodology I used, the conclusion, how they might be able to apply it in their clinics from now on, and then I’ll invite people to collaborate if they need to or want to see that is what I wanted to do for the Stroke Foundation, but they don’t have the mandate to do that. So here I am now in 12 minutes, I’m going to get to speak to, hopefully, hundreds of people who are specifically my audience.

Bill Gasiamis 40:23
I’m going to be able to potentially create a new conversation about how we can take this further. So from your perspective, because you’re already an accomplished speaker, you have a platform that you could use at some in some way in the future that you can add to your your toolkit this particular presentation that you feel is important for people to become aware of, with regards to stroke specifically, or the ideas around recovery From a stroke, like resilience, leadership.

Roderick Jefferson 41:02
That’s how I’m messaging and positioning it now, the resiliency and the determination and grit, those kind of things. But I love the fact that you figured out a way to message and position this to the medical community that mattered enough to them to give you a platform that you can now leverage outside of their world and inside of their world. I mean, you’ve got, what, 12 minutes you said. You’ve essentially got the equivalent of a TED talk with a live audience and Q&A That’s amazing. That’s ultimate goal, to do what you’re doing right now.

Bill Gasiamis 41:44
Yes, so I’m still fulfilling my desire to want to help. This will still, perhaps there’ll be Stroke Foundation people in that room, so they may not be the specific organization I’m representing, and that’s okay, but I’m still representing the stroke community, and that’s really what it was about. It was about, how do I do it? Still, even though these guys can’t, because of their mandate and the way they’re funded, can’t support somebody like me who has these types of desires.

Bill Gasiamis 42:18
So it’s great if they contact me and say ‘Can we use your likeness again? Or can we? Yep, I’m up for that, no problem, we can do that, I’m happy to be that guy. It’s not like they don’t remunerate you, they do, but on a very small scale, right? So it’s just to say thank you, and I appreciate that and that’s great, right? So from here on what I don’t know. And this is the beautiful part Roderick, is I don’t know what’s going to happen when I get to that end of that presentation, and that’s the part that really excites me, right?

Roderick Jefferson 42:54
That’s amazing, because you’re getting to fulfill your need of giving back right, to that guilt survivor, you get a chance to help kind of squelch and put that one to bed. And at the same time, you get a chance to help the medical community, really at a deeper level, personally, to understand what we are.

Roderick Jefferson 43:16
Now, here’s the piece that you really hit on, that struck with me, and that is, then what you never know who’s going to be in that room or that’s going to see that recording that propels you, your messaging and our entire stroke community to a whole other level. That has to be incredibly exciting.

Bill Gasiamis 43:39
It is the most energized I’ve ever felt. You know, it’s if I’m not working on it, it’s working on me. Why aren’t you working on me? Why aren’t you present? What aren’t you doing? You know? And it’s like, it’s always in my mind, I cannot escape, escape it. And in in a really good way, it’s like, oh, here’s a new idea for you that you didn’t think of five minutes ago. Write that down, act on that later. So it’s very it’s a very beautiful kind of, like organic.

Roderick Jefferson 44:15
It has to be somewhat cathartic and rejuvenating, but at the same time therapeutic and healing for you too. No?

Bill Gasiamis 44:25
It’s so much, it was a selfish pursuit, all of this stuff was selfish because I did it for me at the beginning, and then it was cathartic and therapeutic. And then I realized ‘Oh, this is way better than helping just me, because it’s also helping them. and that made the that just me thing much, much better. Because if I’m being selfish and doing it for me, and the result is somebody else gets something positive out of it, then it’s not really that bad-selfish, it’s not really that self centered, ridiculous, crazy one that you feel bad about.

Bill Gasiamis 45:04
It’s the one that you think I’m going to keep doing this because other people send me emails, they comment on my YouTube videos, they send me Instagram notifications. Everyone is reaching out and going, thank you for that episode. I love that chat. I really relate to that, and it’s like ‘Oh, I never knew that, that’s a bonus. Thank you.

Roderick Jefferson 45:24
Well, it part of it has to be self care now, right? It’s no longer selfish. It’s now self care, but at the same time it is you’ve learned to ‘Give, to give, as I put it, right. It’s not about you at all, you’re just a conduit to be able to help others that you may never, ever know, ever see, even exist, but it’s the impact of all of that struggle that we both had to go through that now could change someone else’s a number of people’s lives, especially with, you know, that thing called the internet that’s going to be big one day, right? You never know who globally you’re touching.

Roderick Jefferson 46:10
This isn’t just a regional thing, you’re not just doing this in a room in Australia with, you know, a finite number of people in the room. No, when you get that footage and it goes out on your YouTube and IG and all your social media there.,I firmly believe, and I do the same thing with my YouTube and IG pieces, I’m starting to put more and more of it out, and I firmly believe that somebody is watching those and being inspired to get better, I don’t know if they’re going to get well, at least, to get better.

Bill Gasiamis 46:46
Just aim for better and then see what happens. Now I’m going to go back and I’m going to comment on something that you said a bit earlier. You know, the whole issue of you and I, quote, unquote, appearing normal like it never happened, people seeing the recovery and thinking that’s what stroke looks like. I know people have had a stroke. They look fantastic, they they back to work, they do all this stuff, right? So I struggled with the title of my book ‘The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 47:17
The first comment I made on YouTube about it, where I was promoting the book, holding it up and promoting it, somebody had a negative response, and the response was, how could you be promoting stroke as something worth experiencing and how amazing it was? And it’s like.

Roderick Jefferson 47:34
It’s amazing now.

Bill Gasiamis 47:36
Clearly I’m not promoting stroke. What I’m saying is that the post-traumatic growth is the part of the journey that you are going to be grateful for experiencing. It’s going to be hard, it’s going to be challenging, it’s going to make you cry, want to curl up, it’s going to be something you want to walk away from, you’re going to have to it’s going to be emotional, it’s going to be mentally difficult, physically difficult, but if you face those challenges, you will succeed in having post traumatic growth, some kind of positive outcome from facing those challenges.

Bill Gasiamis 48:20
And that is what your story and my story is about. It’s not about having people compare themselves to us and say ‘Well, it’s easy for you to say, Roderick, because look at you. It’s about saying that as bad as your situation is, everything can be improved, and if your mindset is that it can’t that’s the outcome that you’re going to get. But if you believe that you can improve something, and your mindset is one of a growth mindset, rather than a stuck mindset or a fixed mindset.

Bill Gasiamis 48:54
Then you’re going to experience a positive outcome, and if you don’t know, if you haven’t got the skill to focus on what’s good about this, then you’re going to be forever stuck in what’s shit about this, and that’s not a place you want to be.

Roderick Jefferson 49:09
Yeah, and we can only lead them to water. We can’t make them drink, right? And they’re never going to understand how we feel. And regardless of what is, I always say things to people, whether it’s death, whether it’s, you know, strokes, whatever it may be, I don’t know how you feel Bill, but I damn sure know how it feels. And so if I can turn that into again, someone that knows that or believes and starts to execute move forward on better, not well, but better. And you know what? I now understand my purpose for still being here, and I truly believe that is my ‘Why me.

Roderick Jefferson 49:59
We’re talking about with the survivor’s guilt of, why am I still here? I think it’s literally not to motivate but to really show others that it’s not just possible, it’s probable, it may not get back to the level where I am. To your point, don’t compare, right? My chapter 20 may be your chapter two, you never know, or you may be at chapter 20, and it’s just where you’re going to be. But incrementally, if you can see even the smallest of forward movement, to me that’s still progress.

Roderick Jefferson 50:41
And progress means a whole lot of different things, because every stroke is different to your to your point. People see us and we go, I’d never know, yeah, I always say, because I had a stroke, the people that never get back, they had a stroke, stroke, and that’s not to minimize what has happened to you and I, just the fact that there are tears and levels of strokes.

Bill Gasiamis 51:05
Yeah, I feel like part of my journey, also Rodrick is to just tell people about concepts that they may never, have never heard of before, like.

Roderick Jefferson 51:16
You’re a different phase of stroke now.

Bill Gasiamis 51:18
Yeah, like, if I just say, like, the post traumatic growth as a concept. Anyone heard of that before? Well, if you haven’t, you better start looking into that, because you need to know about it, right? So you can recognize it when it’s happening to you. What about Psuedobulbar affect? Well, you’ve never heard about that, well now you’ve heard about it.

Bill Gasiamis 51:39
That might make you feel a little better, and you can explain it to your family, who feel uncomfortable when they say a six foot four Man Mountain start crying in front of them and, you know, curling up in a ball. You can explain it, and that’s the reason that could be part of our journey is just to tell you about concepts you never knew about before, so that you can be more informed.

Roderick Jefferson 52:02
Think you’re under something, I think there may be another piece that just hit me while we were talking. We may be a new look and a new face of stroke, where you don’t think just stroke, stroke, right? It’s kind of like heart attacks. At one point, heart attack, you’re gone. Now, people have had heart attacks and gone back to semi normal lives. I think we’re able to show that as well and change the mindset of what stroke looks like and what stroke can look like, it’s not just full debilitation or you’re in a bed or you’re in a wheelchair, it’s also no back to semi normally function.

Roderick Jefferson 52:47
Like I said, I need those 16 pills to keep me, quote, unquote normal. But thankfully, it’s there, and it keeps me, and I don’t even say forward, keeps me balanced, because there’s been times where you know you’re busy, you miss your round of meds, I now know what that guy looks like, and then, by the way, it’s right below the surface, it’s not like he’s gone completely. He’s right below the surface, and without that balance, kind of like any other med, right, whether it be diabetes or by or bipolar or whatever, what the med does is it doesn’t take it away, it just gives you balance.

Roderick Jefferson 53:30
You take that away and that same blubbering, crying, stuttering, deep and aphasia guy comes back. I don’t want to see that guy if I don’t have to, it was the most difficult and the best thing that ever happened to me, because mine. Now, let’s go away from the neurologist. Now, this is my second stroke, I had a stroke five years prior, small on the other side, so I’ve had one on both sides now, my neurologist was talking to my cardiologist.

Roderick Jefferson 54:06
As we were doing a consult, my cardiologist said, then I remember it was over, he said ‘Thank God you had that stroke, or you would have been. And I had it october 28 ‘You would have been dead before Thanksgiving in September. Because it now brought up the heart issue because of the stroke, because that’s what caused it. Now, it shifted the focus. I was a healthy guy, I thought, I have a whole different definition and perspective of healthy these days, right? And I realized everybody’s going through something. My daughter has an autoimmune deficiency.

Roderick Jefferson 54:52
You look at her, you’d never see it like with us, we don’t walk around with a snap on our forehead that said, I have a I had a stroke that’s flashing you. But I guarantee you, if either of us parked in a handy spot and we got out of that car, people are looking at us like, seriously, guy, that’s the only place you could apply. Wait, where’d you get the placard from? How much did it cost you? And I’m looking at you going, you understand what’s bubbling underneath the surface. So what it did for me was gave me a whole different level of empathy for people.

Bill Gasiamis 55:25
Yes, yes.

Roderick Jefferson 55:26
I don’t assume anything, because you don’t know what they’re dealing, what they’re going through, or what it took to look like the person in front of you, maybe they’re taking 16 pills. Who knows?

Bill Gasiamis 55:41
Yeah, and then and then some maybe, you know, it’s empathy is a really cool thing to come from this as well. I’ve said it before on this podcast, I used to see people in wheelchairs and think they were just sitting down. I mean, what an idiot.

Roderick Jefferson 55:58
Never thought that one. No, clearly pre-stroke Bill was a different guy.

Bill Gasiamis 56:05
The guy was an idiot. He was so unaware of things, you know, you never once considered the emotional struggle that that person went through, why they were in a wheelchair, what happened to them, the trauma of say, the injury or like, there was just zero concept. And partly it wasn’t my fault, because I never experienced the life of somebody like that, but also I never knew anyone like that, so it was impossible for me to gain an understanding in an area that I had no connection with, right?

Bill Gasiamis 56:40
And the first time I realized what that was like was when I ended up in a wheelchair and I couldn’t use my legs for a month, like I know now what that means, and how difficult it was to wake up from brain surgery and try to get out of bed to go to the toilet, the nurse thinking that she was going to help me, and me collapsing with a fresh patch on my head after brain surgery, literally on the on the tile floor of the ward, and I know, and I know now what that’s like for the people who are in a wheelchair in a different situation.

Bill Gasiamis 57:19
So it’s like, I can’t believe you were that naive, but I was, and that’s not and I’m not now, and that wasn’t my fault, but I was, I was thick, and I’m glad I’m not, and and now I know people, I know More people who are impacted neurologically by stroke, and physically by stroke, and emotionally by stroke. I know more people than anyone, because I’ve interviewed 300 people that are all impacted by stroke. So it’s like, I am not. I’ve stepped up so I’m not that guy anymore, because he was a good guy, but he was just in la la land.

Roderick Jefferson 58:04
Yeah, yeah, and to your point, you never know what someone next to you is going through or has been through, or how much they had to fight just to be wherever you may be and see them that day, and so it makes you go. Life is a lot different now, and it will forever be changed. And I’m certainly on my side, glad that it has been changed, because I thought I was a good guy, but to your point, I didn’t.

Roderick Jefferson 58:39
You know, you don’t know until you know, what sort of the hours were you thinking I had control of my body and I can do whatever I want, and I’m Superman. No, you’re not, you’re just Clark Kent. That’s what you really are, and there’s no phone booth to go change anything. That’s all you are.

Bill Gasiamis 59:01
Wow. And there’s no phone booths at all anymore. They’ve taken them away.

Roderick Jefferson 59:05
Exactly so there are, there is nowhere to go change into Superman. So guess what? You better figure out who Clark Kent is, and start liking and loving that guy and doing something to give back, not just for yourself.

Bill Gasiamis 59:21
What sort of hours were you keeping, and what is the life of a speaker at your level kind of look like? And how does that juggling a young family and a marriage and all that stuff? How was life? What was it like?

Roderick Jefferson 59:40
At that time, I was back in corporate, so I was senior vice president. I was flying all over the world. I’ve got team in different geographies, different time zones. I’m eating badly. I’m constantly stressed. But again, I got to the point to where that red. Line of stress became the norm, and I realized that if you don’t slow down and and people say, were were there warning signs? Yeah, the first mini stroke was a warning, but it wasn’t bad enough to make me slow down.

Roderick Jefferson 1:00:15
So I went ‘Eh, okay, I felt kind of bad. Now I can move forward, but the second time it said ‘Hello, do I have your attention now? And when you’re laying there and you can’t move, you have a whole lot of time to listen now. Bear in mind, as keynote speakers, we’re talking all the time during that first I’ll say back to your analogy of baby, that first trimester of stroke, all I could do was listen, because I couldn’t move, and I had those conversations every day with God, and I’m like ‘Okay, you got my attention. I’m here now. But let’s I’m here to listen now.

Roderick Jefferson 1:01:01
At first I would say, let’s talk, and then something say ‘You’re not here to talk, you talked enough, you’re going to listen now, and you didn’t want to slow down. So now you’ve given me no choice, and you learn a lot about yourself introspectively, and it makes you reevaluate every part of your personality, of your whys, of your morals, of your scruples, of everything, because if you got nothing but time to think you’re like man, why was I like this? Why did I do this? Why was that important to me? Why was this not? What impact was I having negatively on other people?

Roderick Jefferson 1:01:44
Because I was either constantly frustrated, stressed or angry. And if I get out of this now, this distilling the if phase, if I get out of this, what do I promise to both God into myself that I’m going to do differently. So not just for the point of getting not getting back to that point, but because I found some really dark spots about myself that I really strongly know I hated, and I said, I’ve gotta clean out the closet that part of me has to die forever. I gotta take that corporate mask off. I’ve gotta be more authentic.

Roderick Jefferson 1:02:31
I’ve gotta allow people to touch you proverbially, right? We don’t want the HR issues, but people to really be close, and you know, as well as I do when we’re on the stage, we’re literally untouchable, because they came to listen, you’re supposed to be the subject matter expert, they’re here to hear what you gotta say. They’re looking to be enlightened, I used to do my keynotes, I’d get off the stage, I would go and sign books and go hide out in my room, because I’d be over stimulated by people.

Roderick Jefferson 1:03:08
Now I make sure that I’m touchable. I come off the stage and I let them know I’m the same guy that was up there that you see in front of you ‘What do you want to talk about? Do you want to go sit down. I used to say, grab a cocktail. Can’t do that anymore, right? And don’t miss it, frankly, but I think what I’ve done now is I’ve learned how to listen better.

Bill Gasiamis 1:03:33
Sounds like you didn’t have time for reflection, and therefore, you weren’t able to see what you needed to see to stop doing the things that were impacting you negatively. So then you had this moment where everything stops. You have nothing but time. And now, for the first time in years, you can reflect on what has come before the moment that you’re currently in, and you can critically analyze that and go, Oh man, it makes sense why I’m here ‘Ah, okay, all right, so how do I want to avoid being here again?

Bill Gasiamis 1:04:18
Well, I need to implement some changes. I need to look at the whole experience that I’ve had so far up until the day that I was unwell, and I need to make some changes. That is what I did. It’s exactly what I did, to the extent that what happened to me, Roderick is my brain. I describe it as having completely switched off, and then that enabled my heart to come alive. And I had a moment where I physically noticed something weird happening in my chest, really. And it was just that I became aware that my heart was there, not that I didn’t know that before.

Bill Gasiamis 1:04:58
Not that I didn’t feel it beating or whatever, but it actually came into my awareness in a different way, that it’s like you haven’t been paying attention to me for a long, long time. Your desires have been put on hold, and your your head has been running the show and telling you what the right thing to do is, and it’s not the right thing because you haven’t been happy for ages.

Bill Gasiamis 1:05:28
It’s all about chasing the dollar, and it’s all about working hard as possible and as many hours as possible, and being away from home as long as possible, and you haven’t done the things that I’ve requested of you, and that’s why you’re miserable, and that is not something that we can continue down the road in the future. And that was my second stroke. Was the are you paying attention yet? That was the second incident was, Are you paying attention yet? And since you’re thick and you’re not, or I’m going to make you see.

Bill Gasiamis 1:06:07
And boy, did that make me see. So the third incident, when I had the third bleed about a year and a half later, after the first one, no two or almost two and a half years later, something like that, about two and a half years later, after the first one, the third one was more clinical. It was more like, ah, by the way, I’m still here. I’m still bleeding. You just need to do something about this. Now. There’s business and then when my surgeon came and saw me after after knowing me for two years, she said to me, Well, we’ve been through this two times already.

Bill Gasiamis 1:06:50
This is the third time. It’s unlikely that it’s going to stop bleeding and the risk of you having a catastrophic stroke with this thing not being dealt with has just risen to the point where it’s more dangerous than brain surgery. Do you want to take it out? I was like, Yep, no problem, Yeah, I’m ready to do it. It was a very different experience. The first one was, hey, hey, hey. What about me? Look at me. Look at me. What’s happening? The second one was, you’re not paying attention. And the third one was all about business. Let’s just get this done.

Roderick Jefferson 1:07:29
Yeah, I pray that there’s not a third on this side. And then I sorry to hear you had to go that far, but I think you just really touched something inside of me, and that is, I think, what’s happened now is before that, I would see the world through my ego, and since then, I’m seeing the world through my heart. And that ego has taken a long step back, and now it’s how is this going to hit impact someone else? How can I possibly and and positively help someone else? It’s not a Me-me-me kind of thing.

Roderick Jefferson 1:08:11
And then even someone said to me, and a number of people said we noticed a difference in what you’re posting, even on social media and how you’re positioning these things before. It’s not about you in the book, it’s not about you, and the speaking, it’s everything I put up now is about, how can I help someone else, whether it be about the stroke, or about business or even like and I share a lot more personal stories and anecdotes in just in conversation, than I ever did before, because you have to, if people can’t touch you, you’re not, especially in the world of AI, you’re not real at all.

Roderick Jefferson 1:08:53
And first of all, you’re not being real with yourself. So you could never be completely open to everyone else. I believe that I’ve got a lot more sunsets behind me than sunrises in front of me. I want to maximize every one of them that I have, and I want to know that every day I did something to help somebody else. I may not be able to make your life better, but maybe just a little easier.

Bill Gasiamis 1:09:26
See, and you had that in you because your career, and I’ll speak about your book right now. So Sales Enablement 3.0 the blueprint to sales enablement excellence, right? So your career was deep down, really still always about making other people successful. It was still all about enabling people and organizations to Excel. As selling, so that the company could benefit, so that they could benefit, so that the person buying the product would benefit from the product that they purchased.

Bill Gasiamis 1:10:10
However, seeing, having a career in that space through only the ego is kind of like one, it’s only 1/3 of the actual pie as to how to make a successful interaction when you’re selling something, for example, if you’re just connecting to people via their head, and all the numbers are great, you might be missing the opportunity to connect to somebody via through the heart.

Bill Gasiamis 1:10:39
Which who is more touchy feely, not in the actual physical version of it, but in the way that you know they want to be spoken to or looked at or or encouraged, or you might miss the opportunity to understand what their values are, and that makes a sale not land correctly, and therefore they don’t buy. Like there’s so many different things that you can enhance by going through the heart and adding this additional layer to your bow of the head.

Bill Gasiamis 1:11:12
Version of selling, because that’s a that’s that’s got it worked out, right? But then it’s this, this other part of connecting with people you can’t do it with the head, you can only do it with the heart.

Roderick Jefferson 1:11:23
I describe it as pre-stroke, I was teaching people how to sell post sell. Post-stroke, I’m teaching people how to help.

Bill Gasiamis 1:11:32
Yes.

Roderick Jefferson 1:11:36
Now it doesn’t change the mechanisms, it changes the approach, and it literally took the spotlight off of me. Turn it around, and I now put it on the the sellers and or the prospects or the clients. It’s no more, how do you sell? It’s all about how can I help? And it is so much more fulfilling now than when I was making way more money before, but now I can look in the mirror and say, I don’t just like I love the guy that I see, and not an egotistical way. I love him for what he’s doing for others now.

Bill Gasiamis 1:12:26
Yeah, it’s a good place to be, man, it’s a completely different way to completely different way to turn up in the world and to participate in the world and to engage with people. It’s just look and it’s all that’s what I keep coming back to. It’s all possible because of stroke. I mean, it’s just in crazy that it’s all possible because we are able to reflect on things that we wouldn’t have been able to if we didn’t have this thing happen to us. That’s I’m going to be on stage speaking to clinicians for 12 minutes, and then I’m going to have three minutes of Q&A because of the stroke, it just.

Roderick Jefferson 1:13:16
Actually, I think I looked it in a different set of lenses, you’re on stage for 15 minutes because of who the stroke. The stroke has helped you become.

Bill Gasiamis 1:13:29
Yes indeed.

Roderick Jefferson 1:13:31
And it’s not to negate what you’re saying. I think it’s more about the guy today, Bill versus pre-stroke. Bill, and they’re going to want to know the why and what changed you, and how do you go through life differently now, where you’re looking at going, it’s just who I am now, yeah, and it’ll be far more authentic that way.

Bill Gasiamis 1:13:55
Yeah. So that’s why the book title, you know that’s why, not for any other reason. That’s the only reason why the book title is the book title ‘The unexpected way the stroke became the best thing that happened. I would have rather learnt the lessons in a more different way, but I apparently I couldn’t. So here we are, I’ll take the lessons whichever way they want to come, and that’s I’m okay with that.

Roderick Jefferson 1:14:26
Thankfully you’re still here, yeah.

Bill Gasiamis 1:14:29
So tell me about your what the future has in store for you. Like, where are you at with that? How are you seeing yourself participating now, in in your work life, in your home life, and in all the other parts of your life.

Roderick Jefferson 1:14:49
I go back to that word balance, right? I just was blessed with my first grandchild six months ago, little girl and I am enjoying this so much now, one, I’m still here, but I now get a chance to see her mom in her at that age, all over again, but at her mom’s age, I was ladder climbing. I was trying to get to that next level. I was moving to try and get promoted.

Roderick Jefferson 1:15:18
I was trying to get, oh, I have a chance to and and it’s the two words that that I hear all the time in my home, and that is, be present, I have a chance to be present. When I’m talking to people, I try to be more present. Used to be I’d be talking to you and I’m checking my phone, or nah, you have my attention. I have yours. I think I’ve gone from a life of presentations to a life of conversations, and I’m loving it right now.

Bill Gasiamis 1:15:59
That’s a pretty profound switch.

Roderick Jefferson 1:16:03
Just feels right.

Bill Gasiamis 1:16:06
Yeah, it’s a two way conversation, whereas before it was one way.

Roderick Jefferson 1:16:14
Yeah, I leave the keynote guy up on the stage, even on the stage now I’m up there having conversations. I’m not giving presentations anymore. I’m talking a lot more about this subject than just the the productivity and the revenue piece, and I’m still doing that, don’t get me wrong, and there’s a place for that, but I think because of this, it’s given me a different platform now, and also different to your point of going and doing your 15 minute coming up, it gives us different stages, which now gives us an opportunity to impact different people differently.

Roderick Jefferson 1:16:55
It’s not just about the money. Money doesn’t hurt, but it’s not that’s not the primary driver, it’s How can I go and help somebody and and my wife says the same thing every time I leave, or when I’m jumping on something like this, she’ll pop her head in, she’ll look at me, and she says the same thing every time go make a new friend, and it just puts me into a whole different mindset and a different phase of life. Go make a new friend.

Roderick Jefferson 1:17:31
If we can do that every day, imagine how much sweeter life is because there’s enough garbage going on out there in the world, but at the same time, there are still some wonderful folks. And I saw something on social media the other day. There are a lot of really good people in the world. If you can’t find one today, be one.

Bill Gasiamis 1:17:58
Yes, that is awesome. I want to, I’m aware of your time, and I want to get us to the end, because I this could be a very long.

Roderick Jefferson 1:18:11
We could talk all night about this conversation.

Bill Gasiamis 1:18:14
So, with that in mind, what was the hardest thing about stroke for you?

Roderick Jefferson 1:18:22
The hardest thing was, as an athlete, not having any control of my faculties, as a speaker, not being able to articulate what I was feeling and going through, that was the hardest part. Well, that was second hardest, the hardest was seeing the pain in my family’s eyes and every day being terrified as to whether or not I would wake up the next day. That was tough on me, you know, as a man, I’ve been married for 34 years now. I’ve got two lovely children, grandchild. I’ve always believed that my role was to provide and protect, I can’t protect or provide for-from not here.

Roderick Jefferson 1:19:14
That was the hard part. Remember when I came home from the hospital laying on the couch and thinking, if it’s crazy stuff that goes through your head, if someone busted the door down now and ran into my house, there was nothing I could do, nothing. And so what it did for me was it opened up, I’ve never really considered myself to be religious, but it opened up a whole different level of spirituality for me, and also, I realized that every time I tried to drive the bus, proverbially of life, I hit a wall or a tree, which I include the stroke.

Roderick Jefferson 1:19:54
But I realized when I sit in the passenger side and I let the. God, drive, I’m realizing how beautiful the scenery is that I missed out on by just trying to always be in control, always be in on top of things. Now it’s not about power, control, any of that, it’s literally about enjoying now, I’m not saying I live in its utopia, but things that used to frustrate me, I’ll admit it, I had a really, really bad problem with road rage, especially here in San Francisco, Bay Area.

Roderick Jefferson 1:20:35
Now, things that used to just infuriate me, they don’t even hit my radar anymore, not at all, I’m like ‘Wow, could be worse. And I’m reminded every time I drive past my hospital, it could be a lot worse, right?

Bill Gasiamis 1:20:55
Yeah, what is something that stroke has taught you? I know we’ve spoken a lot about the lessons, but what’s something that stands out?

Roderick Jefferson 1:21:06
What stands out for me is personally, we do all of the things we do professionally to again, provide and protect and take care of your family, but everything that I was doing was actually taking me away from them more, and I was too egotistical to even see it. I was loving being on the road. At one point, I was seeing beautiful places. I was going everywhere. I remember my kids got older, and they’re like ‘Dad,sure, we loved Hawaii.

Roderick Jefferson 1:21:33
We loved having a really nice, affluent life, but we would have wished that you were home, my friends dads are at our basketball games, our cheerleading pieces, our dancing competitions. I’m looking around like, where’s my dad? I miss my daughter’s eighth grade graduation. I was in Paris. It was a beautiful view, but she’s 34 now, and she still will never let me forget that. I mean, so now it goes back to being present.

Bill Gasiamis 1:22:07
There’s people listening who in to learn from our discussion, and they’re probably all, all over the spectrum of stroke and then recovery. Would you like to tell them? What kind of wisdom is this something that you could impart for the people that are where we’ve been before.

Roderick Jefferson 1:22:37
It’s going to get dark, gonna get really dark. Don’t give up because there’s somebody counting on you to get back, and if you remember your why, you’ll keep fighting. And like both you and I have talked about for the last hour, the lesson that comes out of your stroke may not be for you, it may be for everyone else around you, or people that are watching and paying attention that you don’t even know exist, don’t let them down.

Bill Gasiamis 1:23:16
Yeah, that is a very cool answer that’s kind of like the what kind of example, do you want to lead? Do you want to be the terrible example of how you go about recovery and how you overcome things? Or, do you want to be the example of, say, your loved ones are watching, or your grandkids are watching. You want to be the example of when they go through something terrible in their life, which inevitably they will.

Bill Gasiamis 1:23:50
They’ve got a a previous experience that they can reflect on and go, Well, okay, that’s how that person handled them. I wonder if I could perhaps go down that path, then one of those really terrible ways of handling a diversity.

Roderick Jefferson 1:24:10
Absolutely, I firmly believe that legacy is what happens when you don’t care who’s watching, because you’re just being real, an optimal dig, that’s legacy, everything else is brand and marketing at this point.

Bill Gasiamis 1:24:29
Thank you so much for being on the podcast, for reaching out and for connecting with me and sharing your story.

Roderick Jefferson 1:24:35
Thank you so much. I truly appreciate it.

Bill Gasiamis 1:24:38
That brings us to the end of episode, 325 I hope Roderick Jefferson’s story of surviving a near death ischemic stroke inspired you as much as it did me. His resilience and determination and journey of post traumatic growth offer hope for anyone navigating the ups and downs of recovery before we wrap up, I want to give a heartfelt thank you to everyone who leaves comments on the YouTube channel every single day, you are part of what makes this community so special, and your words often touch the lives of stroke survivors around the world.

Bill Gasiamis 1:25:14
I also want to acknowledge the almost 50 people who have left the five star review on Spotify and the many more who have done the same on iTunes, Your support makes all the difference helping others discover the podcast and offering them the same encouragement you found here. If you haven’t already, please consider leaving a five-star rating on iTunes or Spotify, and for those watching on YouTube, remember to like, comment and subscribe to stay updated on future episodes. And finally, if you’d like to further support the podcast, head over to patreon.com/recoveryafterstroke.

Bill Gasiamis 1:25:47
Every contribution helps us bring more stories like Rodericks, to those who need hope and guidance on their recovery journey. If you’re a stroke survivor with a story to share, I’d love to hear from you. My interviews are relaxed and unscripted, so just come as you are. You can also visit recoveryafterstroke.com/contact. If you’d like to sponsor an episode of the show, please get in touch. Thanks for joining me on the podcast today, and I can’t wait to see you on the next episode you.

The post Surviving an Ischemic Stroke: Roderick Jefferson’s Journey with Hypertrophic Cardiomyopathy and Recovery appeared first on Recovery After Stroke.

Many stroke survivors experience a crisis of meaning during recovery, questioning identity and purpose. This moment of loss can lead to profound growth and a rediscovery of life’s deeper meaning, turning adversity into a new beginning.

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The post The Crisis of Meaning in Stroke Recovery: Transforming Adversity into Personal Growth and Purpose appeared first on Recovery After Stroke.

A basilar artery stroke is a type of ischemic stroke that occurs when the basilar artery, which supplies blood to critical areas of the brain, becomes blocked. This artery is part of the posterior circulation system and plays a vital role in delivering oxygen-rich blood to the brainstem, cerebellum, and occipital lobes. A stroke in this artery can be severe, often leading to significant neurological damage due to the areas of the brain it affects. Let’s explore the causes, symptoms, diagnosis, and recovery process associated with a basilar artery stroke.

Like other ischemic strokes, a basilar artery stroke occurs when blood flow to part of the brain is obstructed. This can happen due to:

The symptoms of a basilar artery stroke can be wide-ranging and severe, as the stroke impacts vital functions governed by the brainstem. Common symptoms include:

These symptoms may develop rapidly or gradually, which can make diagnosis challenging in some cases. Prompt medical attention is critical to minimize damage and improve outcomes.

Early and accurate diagnosis of a basilar artery stroke is crucial to effective treatment. Common diagnostic tools include:

Once diagnosed, the treatment of a basilar artery stroke focuses on restoring blood flow and minimizing damage. Common treatment options include:

Recovery and Rehabilitation

The recovery process following a basilar artery stroke can be long and complex, as it depends on the extent of the damage. Stroke survivors may experience varying degrees of physical, cognitive, and emotional challenges. The key elements of stroke rehabilitation include:

Basilar artery strokes can be life-threatening, but with prompt treatment and comprehensive rehabilitation, many survivors are able to regain some or all of their abilities. Recovery may take months or even years, but continuous progress is possible with the right support and persistence. It’s also essential to adopt lifestyle changes to reduce the risk of a recurrent stroke, such as eating a healthy diet, exercising regularly, managing stress, and adhering to prescribed medications.

A basilar artery stroke is a serious medical event that requires immediate attention. Early diagnosis and treatment can make a significant difference in the outcome, and rehabilitation plays a vital role in helping survivors regain independence. With the right medical care and support, many individuals can lead fulfilling lives after a basilar artery stroke, embracing their recovery journey one step at a time.

If you or someone you know is at risk for a stroke or has experienced one, stay informed and proactive about stroke prevention and recovery strategies. Early intervention saves lives, and rehabilitation restores hope.

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00:00 Introduction
07:56 Hospital Assessment and Initial Rehabilitation
13:28 Basilar Artery Stroke
15:38 Medical Advice and Dietary Changes
26:18 Emotional and Psychological Impact
38:21 Driving and Independence Challenges
50:58 Learning and Adapting Post-Stroke
56:33 Losing A Loved One While Recovering From A Stroke
1:01:14 Reaching Out To People In Times of Loneliness
1:08:24 The Hardest Thing About The Basilar Artery Stroke
1:16:23 The Good And Bad Days In Recovery
1:21:43 The Lessons From The Basilar Artery Stroke

Norman Vandal 0:00
Hello everybody, and welcome to episode 324 of the recovery after stroke Podcast. Today, I’m excited to bring you the inspiring story of Norman Vandal, a stroke survivor of a basilar artery stroke. In this episode, Norman shares his journey from the initial symptoms of his stroke, through the challenges of rehabilitation and his determination to regain independence.

Bill Gasiamis 0:28
He talks candidly about the emotional ups and downs of recovery, his time in stroke rehabilitation, boot camp, and the lessons he learned along the way. Norman’s story is one of resilience, grit and commitment to reclaiming his life after stroke, his experiences will resonate with anyone who’s been through the stroke recovery process or supported a loved one through it.

Bill Gasiamis 0:54
You won’t want to miss this powerful episode packed with insights into stroke rehabilitation, overcoming fear and rebuilding after a stroke. Before we dive into Norman’s story, I’d like to remind you of how you can support the podcast. If you find these episodes helpful, inspiring or insightful, please consider supporting the show through Patreon, at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:22
Your support helps keep the podcast going and allows me to continue sharing these powerful stories offering hope and practical advice to stroke survivors and their families. Thank you for considering it. Norman Vandal, welcome to the podcast.

Norman Vandal 1:39
Thank you.

Bill Gasiamis 1:41
Thank you for being here. Tell me a little bit about what happened to you.

Norman Vandal 1:43
Well, I don’t know if you’re familiar with the Thanksgiving holiday in the States. Kind of a celebration of the harvest and so on. And I was scheduled to go up to dinner with my daughter in law’s mother and my family, and they live in Shelburne, which is about 60 miles away. And my contribution to the meal was to make some mashed potatoes.

Norman Vandal 2:13
I grow a lot of potatoes in the potato piece field near here, and I always contribute potatoes. So I got up in the morning and peeled some potatoes and boiled them, and a while later, when when they were done, I took them over to the counter, and I was starting to mash them, and my right leg started to feel a little bit strange, like, if it was a four cylinder engine.

Norman Vandal 2:41
It was maybe running on three and a half cylinders, You know. I could still walk and move it okay, but it had a kind of odd numbness to it. I’m quite conditioned to feeling sciatic pain from arthritis in my spine. And I assumed it was some variation of sciatic pain. It persisted. It didn’t get worse.

Norman Vandal 3:05
I finished making the potatoes and got in a truck and left, and on my way to Shelburne, I stopped and put gas in in a gas station. And I was, you know, very comfortable doing that, but I could still feel the weirdness in my leg, and I started to drive, and I got probably about two thirds of the way there, and it started to happen in my right arm.

Norman Vandal 3:31
So now my right arm and right leg are feeling weird, and I knew something was wrong, and I knew that, since it was all on one side that it was most likely a stroke. So I continued to drive, which I’m not sure was the smartest thing, but I had to get somewhere. And so I drove, and I got to to my daughter’s daughter in law’s mother’s place, and I walked in and said, Carol, ‘here are your potatoes. I’m having a stroke.

Norman Vandal 4:06
And she said, you are. And I said, Yeah. How do you know? Well, I explained, and she said, Well, what do you want to do? And I said, I need to go to the hospital now. So she got an ambulance to come, and they, you know, fired me up to the University of Vermont Medical Center, and I was admitted immediately, and they started doing imaging.

Norman Vandal 4:31
And during that time, it was getting progressively worse. Not that I was entirely noticing it but my children, who were now there with me, started to notice it. They brought me food to eat, and I was really unable to hold a utensil and eat.

Norman Vandal 4:56
And my daughter said to me, she said, you know, Dad, you can’t eat. Your hand isn’t working. And I was like, Oh, no kidding, you know, really. And I noticed that my leg wasn’t functioning really well either. And she noticed it before I actually felt it. And then I realized what was happening to me.

Norman Vandal 5:20
At that point, I started to get pretty concerned, you know, because this was happening slowly, and that felt strange to me, because I never heard of a stroke taking that long to happen, the full effects of the stroke. I mean, this started about 8:00 to 8:30 in the morning, and it really wasn’t until 7:30 or so that night when it had done the most damage it was going to do.

Bill Gasiamis 5:50
So how long did you take to get to hospital though, how long?

Norman Vandal 5:55
It was very quick, because the hospital was like 10 miles from the house, and the ambulance came right away. It probably took me maybe 35 minutes.

Bill Gasiamis 6:08
When you went to hospital and said, I think I’m having a joke. Did they agree with you? Did they treat that seriously when you said that?

Norman Vandal 6:18
You know, they started imaging right away so I’m assuming that they did. You know, it’s interesting. And I don’t know if your other people who write in other patients feel this, but I was really, I was kind of out of it, you know, really sort of confused as to what was going to happen next and where was this going, and so on.

Norman Vandal 6:42
And plus, my children were there, and they were very capable. Both, very very intelligent adults. And they were pretty much dealing with the doctor, and I was basically in bed, you know, almost being introspective and trying to figure out what the heck was going on..

Norman Vandal 7:02
But they did the imaging right away, which leads me to believe that, yes, they knew. And from my description of it being one on one side, they knew I was having a stroke, you know.

Bill Gasiamis 7:15
So just all the things that I think are weird is that even though you were having a stroke, and you suggested that you’re having a stroke, and they were doing the imaging.

Bill Gasiamis 7:25
They gave you food. And stroke survivors, or stroke patients, while they’re in that state of having a stroke, may have some challenges with their swallowing, and therefore, food is probably not the right thing to do unless they’ve assessed you. Perhaps, did they assess you?

Norman Vandal 7:43
No. No, they didn’t. They didn’t assist me at all, you know.

Bill Gasiamis 7:49
Assess. Did they assess you?

Norman Vandal 7:52
Pardon? They assessed me?

Bill Gasiamis 7:54
Yeah, did they assess you?

Norman Vandal 7:56
Yeah, eyes and, you know, and so on. And, you know, movement, and could I cross my legs and that sort of thing, you know. And I have a feeling that they must have felt that it had done its damage, and it was minimal, you know. I guess, I found, as I said, when I wrote to you about my experiences, you know, which was very brief.

Norman Vandal 8:24
That I had a lot of questions, you know, and you’re asking some of the questions that I had. And because I’m in a very rural place, the hospital communication isn’t always the best, and I’ll explain that a little bit better further on. But by the time the stroke had done its damage. I was unable to move my right leg, if at all.

Norman Vandal 8:56
I could pick it up slightly. I was able to cross my legs, which they asked me to do. I could lift my right arm, but I had no dexterity or movement in my hand. I had no facial paralysis. I had no cognitive damage. I was able to speak. I had a little bit of numbness on the right side of my mouth that I could tell that it was affecting my pronunciation.

Norman Vandal 9:27
But I don’t think it was noticed by other people. And that’s sort of a syndrome that I felt all the way through the stroke, and still do, because people say to me, man, you’re doing really well. And in my mind, I’m saying, Yeah, but you don’t know how I feel, you know?

Norman Vandal 9:44
And that’s probably a standard thing, you know. If it looks good, we’ll call it good, but in my mind, it’s not where I want it to be, you know.

Intro 9:47
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things but obviously, you’ve never had a stroke before.

Intro 10:16
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. It’s called seven questions to ask your doctor about your stroke.

Intro 10:38
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.

Norman Vandal 10:54
So I stayed in the hospital there for three nights, and the plan was to send me to a rehab center called Fanny Allen, which is part of the UVM network. This is a teaching hospital. It’s a hospital with a good reputation, but Fanny Allen has a superb reputation, but people call it the boot camp.

Norman Vandal 11:23
And there is a reason. There was a young man in the bed next to me in my room who was very young, like in his early 40s, and he had a stroke, and his condition was about the same as mine.

Norman Vandal 11:40
You might have had a little more serious paralysis, and he was waiting to go to Fanny Allen, the same way, and we were both concerned as to who was going to go first, because there’s a lot of demand for people to go and a lot, and I was really fortunate to be be able to get in there right right away, because I feel that that’s what really saved me in a lot of ways, you know.

Norman Vandal 12:10
Yeah, so when I went to Fannie Allen, I was checked in, and I was assessed by a PT and an OT. And there was a different neurologists there working with me. And the following morning I moved into in the evening, and the following morning I started into pretty heavy duty PT, right away. I couldn’t walk.

Norman Vandal 12:35
I could walk barely with a walker, but it was just no control, really, and it was something they didn’t want me to try or do. But immediately they got me into walking briskly on treadmills using a harness suspended from a harness, and that way, if I fell, I was caught. And I, honestly, I knew sort of intrinsically or even philosophically that this was the best thing for me. This boot camp.

Norman Vandal 13:11
But it was frightening. I mean, it really in some mornings I had like a scheduling, a protocol for the day, and some mornings I felt like hiding under the covers. I mean, it was just grueling, absolutely grueling, tiresome.

Norman Vandal 13:28
More, you know, both physically tired, but just almost emotionally tired, you know. Just really, really a feeling I’ve never had before. I had really, really good people. But to backtrack a little bit. When I left, I met with a neurologist at UVM a couple times who was taking my case, and she told me that I had a stroke because of blockage in my basilar artery on my left side.

Norman Vandal 14:07
Which affected my right, you know, motion and so on of my of my right side, she gave me some targets that I had to try to achieve, you know, sort of in my own personal life habits. And I had an A1C of about 6.1 which meant I was essentially type two diabetic.

Norman Vandal 14:38
I had an LDLC, you know, cholesterol that was up around 120 and my blood pressure, typically was maybe 160 over 80, you know, for blood pressure, and I’d been dealing with that my entire life, but not dealing with it as seriously as I am now, I can tell you, you know, and I should have dealt with it more more seriously.

Bill Gasiamis 15:05
Those medication you were taking?

Norman Vandal 15:09
Yeah, I had been taking medication for blood pressure and for cholesterol and I had been taking a statin, which I probably should have stayed on, but I dropped off of the statin because it was giving me muscle problems, and that’s happening to me right now, on a statin that I’m taking.

Norman Vandal 15:38
I know the seriousness of taking a statin, and I’m going to be back on and I’m right now I’m on a hiatus to try to get this back and to leg pain to go away. The neurologist at the Fannie Allen explains something to me, and I don’t know if this is something you’ve heard from other people or sort of dissected from conversations about statin.

Norman Vandal 16:03
But explain that what the statin does, aside from from lowering your cholesterol, you know your your your bad cholesterol and elevating the good cholesterol, explain that what happens to plaque in your arteries, that it it, it can have a rough surface, and if it does, it interrupts the flow, and it’s sort of like a stream going over stone.

Norman Vandal 16:30
You know, wild river, and it makes eddies and disturbances in the flow, and that causes differences in velocity, which makes more plaque developed. And he explained to me that that maybe the best part about taking a statin is that it’s been shown to smooth out those blockages, which makes them more stable and that when that was the assumption, yeah.

Bill Gasiamis 16:57
The challenge with statins is actually very controversial these days, and a lot of people are talking about how statins perhaps are not the right solution for high cholesterol, at the same time, what they’re talking about is also they’re saying that high cholesterol is not necessarily the problem causing plaque deposits in the arteries.

Bill Gasiamis 17:23
And the fact that there are plaque deposits in the arteries can only really be shown with the correct scan of those arteries, so imagine that your neurologists have consulted some cardiologists, and they’ve checked out your arteries to see whether or not, in fact, they are blocked up, or whether they are free-flowing, whether they have cholesterol deposits in there or not.

Norman Vandal 17:50
They do.

Bill Gasiamis 17:51
So, they do so, there tends to be a approach by the medical professionals that all people who experience a stroke because of an ischemic reason. So for like a blood clot of some prescription should go on a statin as a preventative A and for people who have plaque deposits, they should go on there to reduce the significance of the plaque deposits.

Bill Gasiamis 18:23
Now that is potentially and I’m not a doctor, so please nobody take my advice, but just think about my conversation, just as that a conversation, don’t do anything based on my discussion. So they have this very big umbrella for why a statin should be given, and some people receive it when they shouldn’t be taking the statin.

Bill Gasiamis 18:54
Especially when they haven’t got cholesterol deposits and their and potentially their their blood clot may have been caused by a a genetic condition that has a blood clot disorder associated to it, rather than a blockage or rather than cholesterol deposits, so that’s where the controversy kind of comes in.

Bill Gasiamis 19:24
Now, one of the things that doctors don’t say is that cholesterol can be resolved and sorted out, and so can the reduction of cholesterol deposits in the blood vessels by changing one’s diet and by removing certain inflammatory foods that create that are likely to support the creation of cholesterol deposits.

Bill Gasiamis 19:47
And as a result of that, making those changes and supporting yourself to decrease the cholesterol deposits in your blood vessels naturally, then in combination with a statin, then at some stage you should be able to get to the point where you no longer require a statin. So the challenge is not so much for people who are 75 years old or over.

Bill Gasiamis 20:16
It’s for people who are put on statins at the age of 40, because statins are also suspected by some to have to be contributing to down the road neurological diseases such as dementia and Alzheimer’s, because what apparently is the case, apparently, but I haven’t researched this enough, but this is just some stuff that I’ve read from time to time.

Bill Gasiamis 20:45
Is the cholesterol, the good cholesterol, which is, in fact, there is no such thing as bad and good cholesterol, but that’s just how they’ve labeled these types of cholesterols. The good cholesterol is what the brain needs to keep itself healthy.

Bill Gasiamis 21:03
It’s a fat and it uses that as a fuel source and energy, and depriving the body for 30 the brain for 30 years as a 40 year old of good cholesterol ends up causing neuro neurological problems down the road.

Norman Vandal 21:21
Yeah, like you said, maybe dementia or something, is there clinical evidence of this now?

Bill Gasiamis 21:28
Certainly is clinical evidence. Now one of the best places to start a to start being curious about the the way one should look at brain health, there’s a book by a doctor called Dr David Perlmutter, and I’ll have the links in the show notes. Dr David Perlmutter. It’s called Brain Brain, I’m just going to find it online.

Bill Gasiamis 22:06
And he’s a neurologist, board certified neurologist, and he has a clinic where he deals with people who have Alzheimer’s and dementia, and many many years ago, he wrote his first book, and it was about trying to show people how to go about decreasing the bad markers in their blood work and increasing the good markers in their blood work, and the book is called.

Norman Vandal 22:38
Predominantly dietary?

Bill Gasiamis 22:39
Is that all dietary. So none of this is my conversation with you about it is, none of this is designed to divert people away from the medical assistance that they are receiving, or their medication, or any of that stuff, because when there, when there isn’t another way out of this.

Bill Gasiamis 23:03
You don’t have another solution, cholesterol medication or or statins, is definitely supporting the patient from having a condition right now that is going to be dangerous to the health. So it’s really important that you know blood pressure medication, unless your blood pressure stabilizes and becomes normal by itself.

Bill Gasiamis 23:28
It’s important to have it, because it’s going to help you right now in the acute phase of high blood pressure, for that not to accelerate, become worse and then cause a brain hemorrhage or a heart attack. So there is a need for the medications.

Bill Gasiamis 23:43
Certainly, there is a need for medications, and they are proving to support people, stay healthier, live longer, avoid stroke, certainly. So the question is what can you do to support that process as well?

Norman Vandal 24:00
Well, I had these the goals of an A1C of 5.7 and right now I’m 5.1 so I’m no longer even close to being diabetic. I’ve lost 35 pounds. Excellent, excellent, great. I my my LDLC bad cholesterol is 39.

Bill Gasiamis 24:27
Excellent.

Norman Vandal 24:27
I’ve had to even ask the doctor if I’m alive, with a 50, I’ve never heard of anyone with a 39 cholesterol, and my blood pressure averages about 135 over 65.

Bill Gasiamis 24:41
Yeah, that’s so important, that’s great.

Norman Vandal 24:44
So I’m doing, I’m doing, you know, this, this is this both frightened me and and as a monkey on my back, as far as recurrence is concerned, you know.

Bill Gasiamis 24:57
Got you moving in the right direction.

Norman Vandal 24:59
Sure. Well, my children say to me, well, don’t you remember the doctor saying this? Don’t you remember this happening? And I and I say, No, I was lying in bed wondering if I was going to live the rest of my life like this. This was, this was traumatic and very frightening.

Bill Gasiamis 25:16
What I’d love to know Norman is, how did you lose 35 pounds? What changes did you make?

Norman Vandal 25:23
I’ll tell you why. Well, I changed my diet pretty radically. I was not I thought I always ate pretty well, but I did I ate too much, and I did eat too much of foods that I wouldn’t exactly call healthy, I wasn’t a fried food eater, you know, like to go to a chicken, you know, fried chicken, or get fried fish, fish and chips, or things like that.

Norman Vandal 25:51
But I did eat a fair amount of meat, and, you know, now I meat, but most of the meat that I eat, almost all of it, is venison, which is very healthy, very low and very healthy, you know. But the thing is, in my in my stay, I’m trying to stay chronological here and not and not forget anything that I wanted to say to you.

Norman Vandal 26:18
But the diagnosis that I got was, of course, like I said, an ischemic stroke from blockage that was in began in the basilar artery. And so at Fannie Allen it definitely was a boot camp.

Norman Vandal 26:34
One of the things that they made me do that was absolutely frightening was they would tie a belt around my waist and a rope dragging behind me, and put a 30 pound weight in a bag, and they would make me walk, this is when I started to have some control walking.

Norman Vandal 26:53
And had me walk around the circuit in in the hospital, in between these two lines on the floor, I had to walk as fast as I could, and it was just totally frightening, I mean, it’s a hard floor, you know, tile floor. And I thought ‘Man, I’m just gonna, you know, I’m gonna fall, for sure. And of course, the PT was next to me to catch me.

Norman Vandal 27:15
But I was doubtful that she could, she could do it if I really fell, you know, so that’s just one of, one of the things. And I am so fortunate being, and I’m a strong, a firm believer in doing this extreme activity right away, this physical activity, in this, I think, is so important, I know it was for me.

Bill Gasiamis 27:38
Do you still do physical activity?

Norman Vandal 27:41
I do. I still do walking on a treadmill and but I actually live in a very rural place, and I do a lot of things outside, and I am constantly moving constantly. I’m not a couch potato, or I don’t watch much much television, I don’t spend an inordinate amount of time on a computer. I’m always moving, I’m keeping that up, I’m doing that.

Norman Vandal 28:12
Now, there was a, there was a neurologist at Fannie Allen who came in to see me one evening, and he said ‘I want to talk to you about something, and I said ‘Sure. And he said, I’m going to draw a chart on a board, a graph, and he said ‘It’ll have a vertical axis and a horizontal axis.

Norman Vandal 28:33
And they said the vertical axes is percentage of use, from where you are to 100% use, and the horizontal axis is time. And he drew a curve on it and he said ‘This is a curve that most people see, and it was fairly steep in the beginning, then it leveled up, and it didn’t go up to 100% of use.

Norman Vandal 28:59
And then he said, from watching you, studying your stroke, seeing the way that you apply yourself, he drew a curve that was much steeper, meaning that I would get to use quicker, and that sort of heartened me, but I also sort of doubted it, because it was so much work just getting where I was.

Norman Vandal 29:22
And he explained that in the first six months, that was my prime window, but that recovery would be a year, that where I would see recovery, but it would slow down, and I was pretty heartened by that, and I thought about that curve a lot, because I’m, I’m really big in, in into visualizations.

Norman Vandal 29:46
If I can see things and turn them into narratives or or pictures, I’m able to understand them better, and so that that was important to me.

Bill Gasiamis 29:57
Let’s take a quick pause here, but we’ll be right back with Norman’s incredible recovery journey, shortly. Before we continue, I want to remind you about my book ‘The Unexpected way the stroke became the best thing that happened. This book is not just my memoir, it’s a practical guide for achieving post traumatic growth after stroke.

Bill Gasiamis 30:17
You’ll read stories of stroke survivors who, like Norman, turned their trauma into an opportunity for growth. You can find it on Amazon or by visiting recoveryafterstroke.com/book.

Norman Vandal 30:31
One night, I was lying in the bed, and a man came in a doctor, and he said Dr so and so I’m a psychologist. And I said, Well, I really no offense, but I said, I really don’t think i need a shrink right now, and he said ‘Oh no, no, no, I’m not here to shrink you, he said ‘I won’t do that, he said ‘I just want to tell you a couple things about stroke that I think will really help you.

Norman Vandal 30:59
And I said ‘Okay, that make that makes sense, you know? So he said, the first thing is you’re going to feel tired, and he said very tired, he said ‘More tired than you’ve ever felt in your life. He said that and, and it’s going to be a lot, you know? He said, You’re going to feel that, that tiredness a lot.

Norman Vandal 31:21
And then the second thing was something I was noticing, but I couldn’t quite understand. He said, You’re going to, you’re going to cry a lot, and I was surprised, and I thought, you know, he’s right, because I am, and I found that for a long time that was happening to me.

Norman Vandal 31:44
I was sort of feeling almost mood swings, you know, where I would just be, everything would be fine, I’d be happy going along, and some inconsequential thing would happen, and I would be in tears.

Bill Gasiamis 31:58
You know, or do what that was called?

Norman Vandal 32:01
No, is there a name for it?

Bill Gasiamis 32:03
Yeah, Pseudobulbar affect.

Norman Vandal 32:05
Pseudo-Bulba Ethic?

Bill Gasiamis 32:08
Pseudobulbar affect, affect.

Norman Vandal 32:09
Affect? okay, sure.

Bill Gasiamis 32:13
Pseudobulbar affect, and it’s a very common condition, and sometimes, instead of crying, it’s the uncontrollable laughing in inappropriate moments, and some people have reported being funerals and laughing when they’re not meant to be and then they’re having to excuse themselves and not be in the room or wherever they’re.

Norman Vandal 32:38
Is there a length of time that seems to persist or?

Bill Gasiamis 32:42
Well, for me, it was pretty extreme early on, for the first, say, two to three years, and then it started to settle down. But every once in a while, a little while ago, I did my book launch, and I was in front of a room presenting and talking about my experience with stroke, and it was a 45 minute entire presentation, the whole thing, 45 minutes from beginning to end.

Bill Gasiamis 33:14
I think I cried four times, and it was unexpected, and I couldn’t stop it from happening, I didn’t think it was going to happen, but there are some little triggers, and one of those triggers is the people in the room, a lot of them are family and friends and my close part of my close community.

Bill Gasiamis 33:35
And as a result of that, it was really difficult to be up there and try to get this presentation out, and I cried way more than I would have liked to, but somehow I got through it, and most days it’s not there anymore that whole unnecessary crying has gone and settled down.

Bill Gasiamis 33:57
Although I do cry more often watching movies than I ever have in my life, those types of things, and, of course, the children. When my kids, who are adults, you know, when we talk about something that’s really close or dear to us, or something moving, I previously, I would have been able to very much hide my emotions, whereas now.

Norman Vandal 34:26
Okay, what are you are comfortable with that affect?

Bill Gasiamis 34:31
Yeah, I’m comfortable with it now, and now I’m I’m comfortable with the fact that I cry actually, and I pretend it’s not happening, and then the kids all know what it’s about, and I’m just like, yeah, just crying again, guys, it’s all good. It doesn’t mean anything.

Bill Gasiamis 34:47
But it’s also good to have a cry and get it off my chest, or whatever it is, yeah, it feels like there’s kind of like a unspent amount of emotion that needs to be expressed and spent.

Norman Vandal 35:01
Obligation, a release, right? Well, you know, I tend to, one of the things that sets me off now is that I’ll be doing something and then I’ll think, you know, about where I was, and that brings me to tears, because I I just, I go right back there, you know, and I see, like, one of the things that I need to do.

Norman Vandal 35:25
And part of it I believe is because of this affect, and the way that it sort of makes me feel psychologically is, I’m very big on, like I said, on on imaging and on, on, you know, being able to think that way and one of the things that I need to do is I need to go back to Fannie Allen, the rehab center.

Norman Vandal 35:49
I need to walk in there, and I need to see that place again, and I need to feel whole. Do you know what I’m saying? I just need have that feeling, and I’m trying to build up the courage to do it, because it’s going to take some courage for me, and I know when I do, it’ll bring the tears, but that’s okay with me, and they’ll understand, but I have to go back there.

Norman Vandal 36:12
I have to close that circle, because it’s to it’s almost the only thing that will tell me where I was and where I am now, and to make that sort of memory connection. Now you asked about weight. Well, one of the things drugs that I was put on, aside from statins, and was Plavics, which is a blood thinner, and I was taking a fairly hefty dose, dose of Plavix.

Norman Vandal 36:43
I’m not I can’t remember exactly what the milligrams were, but within a short time, I started to have taste issues in my mouth, and it got worse, and it got to where I basically I couldn’t eat because everything tasted so terrible that food was completely unpalatable to me, and it was worrisome, and I would force myself to eat.

Norman Vandal 37:11
My son would tell me just how many calories I had to consume based on my height and and I kept trying, and I started reading labels and trying to do and I could not do it. And so I tried contacting the neurologist that I had up at UVM, and I went for two and a half weeks, and she never got back to me.

Norman Vandal 37:31
So I decided on my own that I had taken all of the medications before, with the exception of Plavix, and I made the decision on my own that Plavix was doing this. So I quit the Plavix. I was taking 81 milligrams of aspirin, two as a blood thinner.

Norman Vandal 37:51
But a short while after dropping Plavix, I was sitting on the sofa one day, and I started feeling very lightheaded and very weak, woozy, kind of, and thought something’s wrong. So right away, I called my son, and he was skiing over in the top of a mountain with his two girls, and he said ‘Dad, I’m I can’t get there for like, an hour and a half. So why don’t you call your neighbor, Bob?

Norman Vandal 38:21
I did, and Bob said ‘Yeah, I’ll take you right down. So I went to the ER room in a little hospital south of here in the town Randolph. It’s a very rural, you know, hospital, but it’s excellent. And they checked me in right away from the ER, put me in and ran tests and so on.

Norman Vandal 38:37
And I got a hospitalist doctor there who was just amazing, he was a kindred spirit, and his his attitude and his approach, and it was just reassuring, and he said ‘You know, your Magnesia did blood tests, and my magnesium count had tanked, and he said, you know, explain to me just how important magnesium was for all these functions, and I was deficient in other areas too.

Norman Vandal 39:07
And his explanation to me was, well, first of all, we’re going to put you on magnesium, and I had three IV units, big, units of magnesium, and I was so low. And then he said, at the same time your your symptoms are really like anorexia, because you’re not eating and you’re no longer hungry, you no longer want to eat.

Norman Vandal 39:30
And I said that ‘That’s true, and all the while the taste was getting better because I had stopped the Plavix, and I was in there for three days, and after three days, food was tasting better, and I was getting more, I was feeling a lot better physically.

Norman Vandal 39:53
I wasn’t getting that wooziness or anything. But I think that may have been primarily the magnesium, another thing.

Bill Gasiamis 40:00
And what happened with the with the blood thinner, though, did they put you on a different blood thinner?

Norman Vandal 40:07
No, I was supposed to take the Plavix, part of the protocol was for 60 days, and I quit taking it, like it probably 50 days, or and I stopped, and I didn’t go back. And by that point, I was seeing my cardiologist, and I had pretty much dismissed going back to that neurologist, but I did have a zoom interview with her zoom appointment, which is the the other time that I’ve done this.

Norman Vandal 40:37
Other than now. And it was a scheduled appointment, and we talked, and I told her how I was doing, and she said ‘Great. And then I said ‘You know, I have to tell you, you put me in the hospital. And she said ‘What do you what do you mean? And I said, Well, you never got back to me for two and a half weeks. Well, did you speak to my nurses? I said, several times.

Norman Vandal 40:59
I said, in fact, one got tired of me calling and was very rude to me. Which one was it? I said, Well, why don’t you go, go look at the portal, which is what I’ve been doing, and you’ll see, I said, I’m not going to, you know, sort of rat on somebody this way, you know, I mean, really. So she apologized and so on.

Norman Vandal 41:19
Which was, you know, okay, but still, this had done me some damage. So this was on a Thursday afternoon, on a Friday night, at 7:30 she called me and she said, this is Dr so and so. I won’t, I won’t use names, but, and I said ‘Oh, hello. And she said ‘Well, I need to inform you of something. And I said, What’s that?

Norman Vandal 41:42
She said, Well, you have a brain aneurysm. And I said, what really? And she said, Yes, you have a brain aneurysm, and I need to tell you about it, because it needs to be watched. She said, It’s very small. It’s one millimeter, but it should be should keep an eye on. And I said ‘Well, okay, thank you, I’m going to, going to see a neurologist down at Dartmouth.

Norman Vandal 42:07
I don’t know if you’ve ever heard of Dartmouth in New Hampshire Dartmouth College.

Bill Gasiamis 42:12
I have heard of Dartmouth, yeah.

Norman Vandal 42:14
It’s an excellent place, probably the best around, unless you want to go to Boston. So anyhow, that was the story there.

Norman Vandal 42:23
But I also, one of the things that I wanted to relate to you that was really devastating for me is I live in a very rural location, I lost my wife 11 years ago, and I live alone, and I’m outside all the time. I garden, I hunt, I fish, I’m just really active. But I’m active here, and what I, you probably would think, is a wilderness. So driving, having the ability to drive, is very important to me.

Norman Vandal 42:54
I had to ask friends and relatives, you know, son and daughter and to drive me everywhere and so everything became this conundrum of people are willing to help me, and that’s wonderful, but at the same time, it was hard to be in that position where I had to ask people for help continuously, and it was really just eroding. I mean, it was a worse feeling.

Norman Vandal 43:24
And so part of what I was doing in my physical therapy was trying to enable myself to have enough movement and control cognitively, I was okay, but to be able to drive a vehicle. And so I was going to an outpatient PT nearby, and the therapist said ‘Well, I was doing these things where I couldn’t, if I put my heel on the floor and my foot flat on the floor, I couldn’t pick up the front of my foot.

Norman Vandal 43:57
Couldn’t pick it up at all, you know, it was like paralyzed, and I gradually worked and worked and worked, and she told me something interesting, she said, I don’t know if there’s really clinical data to support this, but if you’re going to do that with your foot, you should do it with your left foot and your right foot, because she said, I believe that this coordination between the two, she’s just like walking.

Norman Vandal 44:21
You’re not going to walk with one leg, and I started doing that. So I would tap with, you know, with both feet, and I got and I could watch myself, I was very, very driven to be back now, to get my license again, I had to take two tests.

Norman Vandal 44:38
One was a cognitive test, and the other was a driving test, and it was very difficult to get these scheduled, but there’s only two people in the entire entire State of Vermont who do it. The first was up at Fanny Allen, and they were booked, and it would have been three months, and so I got one in in Rutland, Vermont, and but first I took the cognitive test.

Norman Vandal 45:03
And when I did, the therapist who who graded or scored me said ‘You’re testing as high as anyone with with complete normal cognition. Your cognition is perfect, and so then it meant the driving test. Well, I went to the driving test with my son who drove me there, and I drove with this young man. He was a therapist, and he was also a driving instructor.

Norman Vandal 45:29
And when I drove, he was more of an instructor than an observer, and he was very didactic, you know, like, well, you made that turn too slowly, you didn’t get off the highway fast enough, you slowed down too much. And of course, I’m trying, I hadn’t taken a driving test since I was 16 years old, you know, so.

Norman Vandal 45:54
But I thought that I did pretty well, aI had, in my own mind, I felt like I had achieved what I needed to achieve, and I was there. Well, when we met afterwards and went to his office, he said to me, he said ‘Well, I see nothing, no damage from the stroke that impairs your driving ability, however, you need more practice, and we need to meet again.

Norman Vandal 46:24
And I did the other part of that syndrome that you we talked about with laughing, I got angry. I got very angry, and I lost it, and I screamed at him and said ‘You’re victimizing me man, you know, you just, you’re hitting me with all of these little inconsequential things. And my son, who was in the room, just, was just horrified by my behavior.

Bill Gasiamis 46:54
You seem, right now, you seem like, you know that was ridiculous, what you were doing and how you were behaving, but right at the moment ‘Oh, you thought it was justified.

Norman Vandal 47:05
Well, my son said ‘Why did you do that, dad? And I said ‘Listen, sometimes a person has to do that. I said ‘Sometimes you have to stand up for yourself, and you have to do that. So I thought about it, and I gave it some thought, and my son was pretty angry with me for doing it and thought and I wish I’d known more about the condition.

Norman Vandal 47:25
Because I might have been able to explain to him that this is some of this is the stroke and some of it. I was genuinely disappointed and angry, so I wrote this young man, a letter afterwards, and I apologized. I said ‘You know, I’m really sorry for having done this, but I’d like you to understand how much driving means to me in my life and where I live and how I live.

Norman Vandal 47:47
So he told me to practice driving with my son, which I did, and I did some with my daughter and then I went back for the next appointment, which was about a month later, and we went out, and he was having the same thing, little tidbits of you didn’t do this bride, you didn’t look in that mirror long enough, and they were, none of them had anything to do with legality.

Norman Vandal 48:16
They were all the idiosyncrasies that he would like to see in his students, you know. And I’m taking what is going on here. So we get back, and he starts with this litany of what I did wrong, and I’m thinking he’s not going to pass me again. And I can’t lose it again, you know. So he then said ‘I’m going to pass you. And I said ‘Great, thank you.

Norman Vandal 48:41
And he said ‘But I need to say something else to you. And I said ‘Well, okay, go ahead. He said ‘You need to sell your house and move. And I just was, I had so such a difficult time not to lose it. The only thing I said to him was I said ‘Listen, if you knew where I lived and what I do and how I lived, and you knew how much that meant to me, you would not say this.

Norman Vandal 49:10
You know, I said I’m I’m aware of where I am life, but I do not appreciate you saying this to me. It , just disheartening.

Bill Gasiamis 49:20
That’s interesting, it’s a perception, it’s a conclusion that he jumps to based on other things that are probably not applicable to you. And then, most importantly, what he should have said was ‘Why don’t you get your license back, and at the same time, why don’t we book in another 10 booking another 10 driving lessons, just so I can get you up to speed a little further.

Bill Gasiamis 49:47
And then that way, you can both achieve the same outcome, you’ve got your license, he’s getting your skills back up to a standard that he thinks is more reasonable or acceptable. And then you both win, and that’s, I think that’s better, it’s better to teach a person to fish than to take them.

Norman Vandal 50:07
Exactly, well, he told me that he had looked up where I lived on Google Earth, and he said, I can see, you know, I looked up where you live, and my feeling was, who gave you the right to do that, you know, but I didn’t say anything because I’d learned my my lesson with the previous outburst, you know, yeah, but what I found is I was fully capable of driving, no problems.

Norman Vandal 50:33
The only issue that I had with driving is the tiredness, and I’m sure of a lot of other people were in my situation, so I had to be careful that I didn’t bite off a trip that was too long, you know, and at a time when I was too tired, and I did that, yeah, and now I would say in terms of the exhaustion and tiredness, I’m doing quite well.

Norman Vandal 50:58
I used to have to just stop in the afternoon and nap, or I don’t need to do that anymore. I’m feeling, you know, sort of revitalized and and overall, I feel really good. I have still have sciatic back pain, which I had beforehand, and it might be exacerbated a little bit more by the stroke.

Norman Vandal 51:22
And I think it’s because of the muscles that are being, you know, firing again, you know, because that’s a term they used all the time. Well, your arm is not firing, firing, and that was a visualization I could see too, you know.

Bill Gasiamis 51:38
So tell me about your your health and your life before stroke. So your stroke happened when you were 75. What was your, the years leading up to that stroke? Because at 75 I imagine most people have had a condition of some sort or another. What was your?

Norman Vandal 51:59
Well, I’d always had issues with high blood pressure, it’s a congenital, almost, I think genetic thing, always. I mean, even when I was young and alive and rugged and active and athletic and everything, I still had trouble with high blood pressure. Yeah, always that I was very active for a long time.

Norman Vandal 52:22
Did a lot of skiing and skiing in the woods and hunting and gardening and, you know, fly fishing and stuff. And I think that the trauma of losing my wife had an effect on me Negative effect, I like food, I love to eat, I like to cook, and I was overweight, and I knew I was overweight, and I would try a little bit to try to lose some weight, but I never, I sort of didn’t take it, what’s the word?

Norman Vandal 52:57
I wasn’t I didn’t see it as a serious issue, when really it was, I had had a heart catheterization once because of a snafu and a stress test, and the hospitalist doctor told me I was going to have a coronary, and I had to have a quadruple bypass, and he was sending me to Dartmouth for catheterization.

Norman Vandal 53:24
When I went to Dartmouth, the cardiologist said ‘Well, you know, if you had done this press test here, you wouldn’t be doing this. It’s because they flagged you that we have to they did do catheterization, and I had some blockage, but nothing serious, and I didn’t need any kind of a stent or or anything like that. So I guess I took that as a good sign, that I was doing okay.

Norman Vandal 53:50
I fully expected to maybe have a stent, but maybe not quadruple bypass. So I sort of some people I wasn’t I had a pretty good gut on me, I wasn’t obese, but I was 30-35, pounds overweight. I carried it pretty well, I was still active.,I felt well enough.

Bill Gasiamis 54:18
Other than your extracurricular activities, yeah, did you do as an occupation?

Norman Vandal 54:24
Well, I did a number of different things, and early on, I built houses, and then I became a cabinet maker, and then a writer. I wrote about period technologies and woodworking furniture. And then I decided that part of my life was not as interesting as what I might go to when I started teaching high school English.

Norman Vandal 54:49
I had a degree in English and literature and a minor in education, and my daughter went to a very liberal, very progressive school here, and I thought ‘Well, that’s a school I could teach in without getting fired. And so I applied for a job there and did some subbing, and I got that so then I taught for 20 years, but during that time, I still was pretty active.

Bill Gasiamis 55:18
So you’re 75 at the time of your stroke that was about a year ago, almost, and you’re six months. Yeah, you’re a similar age to my parents, my mom would be 78 my dad is 82 you you’re of that generation. When my generation speaks about your generation, we talk about how tough your generation is and that they don’t make generations like you guys anymore.

Bill Gasiamis 55:47
Also the generation before you was seriously tough, your parents would have been extremely tough because they would have lived through World War One and World War Two, amongst other things.

Norman Vandal 56:01
Not one, but two.

Bill Gasiamis 56:03
Okay, yep, not one, and then there would have been a discussion about, then there would have been a discussion about the fact that your generation doesn’t seek out psychological counseling and talk therapies and that kind of stuff.

Bill Gasiamis 56:21
So it was interesting when the psychologist came to you, and the first thing that you thought was, I don’t need to see a shrink right now, which is exactly what I would have expected you to say.

Bill Gasiamis 56:33
But how did you go about dealing with your the loss of your wife, and then finding yourself kind of alone in the world. And when I say alone in the world, clearly, you’re not alone, you have amazing family around you, but alone as in, you know, the significant other aspect of your life. How did you find yourself dealing with that?

Norman Vandal 56:57
Well, it was difficult. There’s no, question, and it was a hell of a loss, and she had esophageal cancer, and it was, you know, series of surgeries and so on, and she died at home in hospice, and which was a good thing, but I was home alone with her through most of the bout, my children, actually one.

Norman Vandal 57:22
My son was living in Seattle, working in the wind industry, and my daughter was in Boulder, and her husband was getting a master’s in psychology and and they came home, but still, the entire process, the entire time I was dealing with her suffering and alone, and it was consuming, It just completely consuming, and really, what’s the word? Just profound. You know, very profound.

Norman Vandal 57:59
And and when it, when she did die, I basically went to bed and slept for hours because I was so completely exhausted, and then after, then it’s been hard, but it’s, you know, it’s, I wish I could remember the phrase that Joe Biden uses all the time when he talks about grief, because he’s quite an expert in it. He’s had enough tragedy in his life, you know, right? But, what he says is true.

Norman Vandal 58:30
You know that what used to, you know, put a tear in my eye, and I now can put a smile on my face, but it was hard because I did a lot with my wife, and it was a loss. I’m pretty used to living alone, I live very remotely, my nearest neighbor is over a mile away, I’m up 18 hundred and 50 feet in the mountain.

Norman Vandal 58:53
So my life is, even though it’s sort of immersed in nature, it’s still relatively intense, and just just being involved in that was kind of a support that I needed.

Bill Gasiamis 59:04
Yeah, your description was that you went to bed and you slept for a very long time, yeah, and you were completely exhausted. You know, some people would say that depression has that symptom, that particular behavioral pattern, did you feel like now reflecting on that, that perhaps that you were a little depressed?

Norman Vandal 59:30
No, I don’t. I don’t believe I was, and I’ve dealt with enough with students over the years to have a pretty decent handle on, being able to observe or pick out depression and no, I don’t.

Norman Vandal 59:45
I was more just completely exhausted, both physically and emotionally, I just didn’t, I’d given so much I didn’t. I just needed to get away from it, you know, with a just rest

Bill Gasiamis 1:00:00
The tapping, the tapping.

Norman Vandal 1:00:02
Oh, I’m doing that again now. Yeah, okay.

Bill Gasiamis 1:00:06
So, yeah. So what you’re saying is your response was appropriate to the particular situation that you had yourself in.

Norman Vandal 1:00:15
I think. So, yeah, and, you know, it was an interesting process because, and it still is, because I could, I could see how everyone deals with grief differently. I can see that my son and my daughter deal with the grief and the loss differently, I think that in a lot of ways, it’s had an effect on me, there’s no question, a cumulative effect.

Norman Vandal 1:00:47
I believe, I’m relatively happy, I mean, I like my life and, I haven’t really put any effort into finding a mate. I do have female friends who are good friends, but I haven’t really felt the need for that. I’m quite adjusted to being alone and to into being quiet.

Bill Gasiamis 1:01:14
And you spend time in the community, though, it sounds like you’re not doing it completely alone, you’re not a hermit. There must be times where you involve yourself with the community. Tell me a little bit about those other things that you do, other than your home life.

Norman Vandal 1:01:34
Well, I don’t do a whole lot, and I’ll tell you, because this is a very rural place, I mean, this town only has about 500 people, it’s very, very small, I have friends that I see and do things with, go out to dinner and, work on projects together, help each other to do things and so on.

Norman Vandal 1:01:59
I have involvement with other people, and I have plenty of friends that if I felt lonely, or I would say, I say sometimes I feel lonesome, but I don’t feel lonely, I don’t. I’m not a lonely person, but I can feel lonesome, and when I do, I try to reach out to people, and the people who’ve helped me during the stroke, it just astonishes me, It’s humbling. I mean, I can’t, people offering me, and it’s gets overwhelming, really.

Bill Gasiamis 1:02:37
One of the best things, isn’t it? It’s such a thing, a very common thing that gets reported by stroke survivors is the people that come out of nowhere and offer their support in any way that they can, and it makes it such a big difference to somebody’s recovery and how they go about navigating the months after stroke. You know, it’s really interesting.

Norman Vandal 1:02:59
Prior to to coming home, I spent after Fanny Allen rehab, I spent two and a half weeks living with my son, and he has three girls, three daughters, and Georgia is 9, and Willa is 7, and Elsie was not quite 2 at the time. And it was, it’s just another situation where, if I think back about the disabilities that I had at the time, it’s just, it’s just really overwhelming.

Norman Vandal 1:03:31
I could watch my granddaughter, Elsie, who was not quite two. I could watch her learn, learn things, to do physical things in their body, and learn, sort of intellectually, and it was so parallel to me. It was just such a such an incredible observation of feeling that I had, I could see and I would think of myself as being in that position again, childlike.

Bill Gasiamis 1:04:04
Childlike.

Norman Vandal 1:04:05
Yeah, childlike in both the eagerness to learn, but also in the inability to do what I wanted to do, and I could see her frustration in her learning, and the other thing I could see is her learning by repetition, which is exactly what I had to do. I remember one day I watched her get up from the floor.

Norman Vandal 1:04:27
Then a physical therapist came, and I said to her, I said ‘Do you think I could get up from the floor? She said ‘We’ll do it. So I laid down on on the floor, got down as best I could, and I tried getting up, and I put a hand on the table and put and I was able to pull myself up, and it was just mind bending for me, it was like I could have it was a gold medal, you know.

Norman Vandal 1:04:52
I mean, I was just blown away by the fact that I could do this and I got to where as much I have to say that this stroke has taught me so much about myself, about other people. Now I do things like I’m doing I do 99% of what I’ve ever done. But it isn’t easy, and there are times like I’ve been working on a tractor recently, and I have to reach in and turn, put a nut on a bolt.

Norman Vandal 1:05:27
And my hand has not been taught to do that yet, and so I reach in and I grab this nut I can, I’m fumbling, and I’m trying to hold him and it drops, and try to pick it up. And I do and and I try again, and the weird thing is, I can feel the connection between my brain and my hand. I can just do, you know, did you get that feeling?

Bill Gasiamis 1:05:51
I do know exactly what you mean. So I have a unreal I have a very deep understanding of either the lack of connection or the connection, because depending on the day, sometimes the connection operates better and sometimes it operates less.

Bill Gasiamis 1:06:08
Especially for me, it’s in walking more than anything. So I noticed that on a day where things are not going as well, it’s like the connection’s not there, and the and the way to restore the connection, in a way, is to stamp my foot on the ground and just to let the brain know this is what you are looking for, get onto it.

Norman Vandal 1:06:29
Did you find that anger helped? Like sometimes I say, damn it, I’m gonna do this. You were done, you know what I get?

Bill Gasiamis 1:06:38
That’s most of more determination, right? Writ and determination.

Norman Vandal 1:06:47
I was working with a PT one day, and she was making me take a ball in my right hand and throw it at this trampoline that had was on a slope, and so the ball would bounce, bounce back to me. And she said ‘Well, throw it with your right and catch it with your left. And I just could barely do it.

Norman Vandal 1:07:06
I mean, I was throwing just so ungain, you know, awful. And I said to her, I said ‘Do you mind if I get angry? And she said ‘No, go ahead. And I went, you son of a bee, and I really started cussing and getting right, and I threw that ball perfectly, and you know what I did? I caught it with my right hand.

Norman Vandal 1:07:27
I was blown away, and I thought, why this is contributing, like you say, it’s determination, but it’s also that when I would do that, I would feel that brain connection more, and I have to say that’s a wonderful thing. It really is a wonderful thing, despite the stroke and all that.

Bill Gasiamis 1:07:47
It’s a correctly channeled aggression, perhaps, right? It’s kind of channeled, yeah, and it’s a rather see, I’ve seen people who have done what you’re saying, but in a negative way, in that right? They are being negative and aggressive to themselves and beating themselves up about the fact that their arm is not working, etc.

Bill Gasiamis 1:08:09
So I’ve seen that part of it, but the part that you’re talking about is more appropriately channeled, and then, therefore you use it to help you and support you in you get a result out of it, and that’s good.

Norman Vandal 1:08:23
I do.

Bill Gasiamis 1:08:24
And observe that, I was going to ask a little earlier, what’s the hardest thing about stroke?

Norman Vandal 1:08:32
I think the heart the hardest thing for me has been and maybe it’s because I do live alone, but it’s been my loss of independence, from from the beginning. Now I’m almost completely, independent. Now that was really difficult for me, because I was always a really independent person, but both, sort of in my habits and in the way that I live.

Norman Vandal 1:09:05
But even in the way that I think, and I’ve always been very focused on accomplishments, but not, not I’m not talking about being any sort of a hero or but it matters to me that I’m able to do things and get them done, you know. And there are things that I enjoy. I enjoy working, I always think about the shakers who say, was it mind to hands and heart to God, like feeling that.

Norman Vandal 1:09:37
And that was really hard for me to lose that independence and to get it back now. And the only thing now that that I have, like I said before, is this monkey on my back and the possibility of a recurrence. I’m doing everything that I possibly can to avoid that, and still, I know there’s a chance. So now, when I went to visit the neurologist, my new neurologist at Dartmouth.

Norman Vandal 1:10:05
I met with him, and he asked me, you know, how I was doing and what my tests were, and so what my numbers were. And it was the first time I’d met with him, and he said ‘Well, tell me about your stroke. And I said ‘Well, I had blockage in my basilar artery, and it contributed in Orange County.

Norman Vandal 1:10:24
He said ‘No, no. He almost laughed. He said ‘The basal artery doesn’t feed that part of the brain. So now I’m thinking ‘What is going on here? You know? He said ‘It doesn’t feed that part of the brain. And he said the basilar artery was not involved in your stroke, at the time, I understood that, he told me I’d had a bleed, which was hemorrhagic, which was completely different.

Norman Vandal 1:10:56
And so I contacted him recently, and I said ‘Listen, I’m really unclear about this. It was so shocking to me that I wasn’t asking the right questions. I was just it would just hit me like what went on. So he wrote back and said, well, first thing he told me, he said ‘I can’t tell you to do more than you’re doing, because your progress and your numbers and, your weight loss.

Norman Vandal 1:11:21
Everything is exactly what you should do. It’s what I would tell you to do when you’re doing it already, and then I said ‘Well, what about this brain aneurysm? And he laughed. He said ‘A one millimeter brain aneurysm and a 75 year old man. He said ‘that’s so small, it’s well within the realm of misdiagnosis.

Norman Vandal 1:11:46
He said ‘In your lifetime that one millimeter brain aneurysm is not going to grow and rupture. He said, If you were a 45 year old man, I would treat it differently, but he said ‘I can’t even tell you that it exists. He said ‘So do not worry about it. It’s not there. He said, just don’t, it’s not going to happen, which was good.

Norman Vandal 1:12:10
So recently, I was thinking about ‘Well, okay, well, if this was ischemic, ischemic, then I’m, I’m dealing with plaque, you know, I’m dealing with that blockage, but if it’s hemorrhagic, I’m dealing with a separate set of circumstances, but I thought, well, but the protocol, I think, is the same, right?

Bill Gasiamis 1:12:32
Yeah, blood pressure needs to come down and under control. Blood Vessels need to be clear and operating and allowing blood to flow without any plaques, so that you’re you’re on all the right protocols. There’s no other thing that you might be doing, however, it might be good to see if you can get some clarity on what type of stroke it was.

Bill Gasiamis 1:12:56
Perhaps your neurologist can read the reports from back in the day and find out what exactly happened, because that first neurologist seems to have given you maybe only half the story, or not the full story. There seems to be, certainly some communication breakdown with that first neurologist. Something’s not right there.

Norman Vandal 1:13:19
Yeah, yeah. It makes me feel like, do I need a third opinion?

Bill Gasiamis 1:13:23
I would say, yes, you know, why not? I mean, I did that. I did that a number of times. I went to see a lot of doctors, my scans were viewed by a neurologist in Greece who happens to be my cousin, who was never going to treat me. Then there was another doctor who I saw in one particular hospital for the first incident, and then I left that hospital and took myself to another hospital where I had another opinion.

Bill Gasiamis 1:13:50
So sure absolutely, the more information you have, the better you are, and if you can reduce the anxiety in your mind, in the back of your mind, about what actually went wrong, and how am I tackling this? Then I think it’s very valuable to get another opinion. And doctors all are used to patients getting second opinions, and I don’t think anyone’s going to be offended by that.

Norman Vandal 1:14:14
No, and I don’t worry about doing that. I’m not concerned about it. I’m a pretty good advocate for my own health. He wrote me when I said tell me, I’m really unclear. You know, I remember you saying it was a bleed. So he wrote to me, and he said ‘I never said it was a bleed. And I thought, Well, gee, I think I heard that.

Norman Vandal 1:14:39
But here again, maybe it’s the stroke, and I don’t know, but he said to me ‘I had a left putamental and corona radiata in fraction due to penetrating artery disease.

Bill Gasiamis 1:14:56
Okay.

Norman Vandal 1:14:58
Okay, chew on that one.

Bill Gasiamis 1:15:02
Penetrating artery, disease.

Norman Vandal 1:15:10
Putamental and corona radiata infarction and then he said, You have asymptomatic stenosis of cervical right ICA and basilar artery.

Bill Gasiamis 1:15:26
Okay.

Norman Vandal 1:15:27
I think is telling me that I do have some blockage in the facial art.

Bill Gasiamis 1:15:31
Yes, okay, so it sounds like they’re all. Sounds like you’re on the right track as far as your protocols, everything that you’re doing, exactly what they’re saying. It sounds like somebody is aware of exactly what’s going on, and that thing that you said about yourself is perhaps the stroke is causing you to misunderstand or hear things or imagine things that weren’t said.

Bill Gasiamis 1:15:52
Yeah, that’s a very interesting observation as well, to keep in mind and to be aware of, and it’s great that that you tested him on the fact that you thought that he said you had a hemorrhagic stroke, and he corrected you and said ‘No, you didn’t. And I never said that. That’s good too. I mean, those are conversations you need to have, that’s how things get cleared up.

Norman Vandal 1:16:16
Yeah, and that third opinion you’re you would advocate for.

Bill Gasiamis 1:16:20
Absolutely yeah.

Norman Vandal 1:16:23
I think, I’m gonna pursue that. So now you were saying about how sometimes your progress seems to the good days and bad days, I guess is a way of saying it, and, you know, I find that when I’m tired and this is one thing, if I could ask your audience a question, this would be one of them ‘When you’re tired, when I’m tired, it seems to go south.

Bill Gasiamis 1:16:52
Yes.

Norman Vandal 1:16:52
It just seems to be, it moves backwards, you know, and, and I’ll find that I have a little bit of wiggle in my foot, my leg doesn’t feel quite as strong, my arm is a little bit more shaky and and is that something that you have felt? And how long does that last?

Bill Gasiamis 1:17:14
Yeah, so for me, if I have a bad night’s sleep, or if I had a couple of big days where I didn’t rest enough or did too much, then what happens is the deficits increase and get worse, and I notice them more, and then it settles down when I want to go back into a proper sleeping routine, for example.

Bill Gasiamis 1:17:35
And then things settle down, and I notice it less, so it may not be a deterioration, or that you’re going backwards. Well, in your case, you’re not going backwards, or what it is is perhaps the inflammation that occurred that impacted your brain in a negative way is just kind of rearing its ugly head and letting you know that you’re you’re still not 100% and you need to pay attention to your symptoms.

Bill Gasiamis 1:18:02
And then you need to rest more, perhaps, or you need to alter your diet, or you need to do a little less physical activity. You’ll know what it is that kind of sets you off down that path of not feeling so great, and then you can just ease back on that.

Norman Vandal 1:18:08
You know, I’m trying to, I’m very big on letting my body speak to me, trying to read that. There are days when I feel a little bit woozy, it looks slightly dizzy. A weird thing that happens too, is that I wear reading glasses, I’m wearing them now, and they’re basically what I call drugstore glasses.

Norman Vandal 1:18:40
They’re magnifiers, you know, and if I happen to be working with the glasses on, and then I start to, I stand up or whatever, and I walk a few paces, I get so dizzy, so quickly, it has that effect. And that’s all, it’s a standard reaction anyhow, but it’s so much hyper, so much greater now than it ever has been.

Bill Gasiamis 1:19:07
I had a very long time where my brain was playing games, you know, in tricks on me, where I felt like I was in another plane, in another dimension. I was having these weird kind of out of body experiences, and I would take a little bit of time to kind of reset and go back to baseline, and it was happening just on a normal day. I wouldn’t think that anything had changed or anything was different.

Bill Gasiamis 1:19:36
Then all of a sudden, I’d be feeling spaced out or lightheaded, and I need to rest and sit down. It’s not uncommon that there’s still stuff settling down in there, and this stuff moving and changing. So it’s not uncommon, the important thing is, to for you to be certain that your lightheadedness or the conditions that you notice.

Bill Gasiamis 1:19:59
Not say, a sudden drop in blood pressure too low or a high or a response to something else, that’s kind of the only thing you need to be aware of, and I would make this type of information known to your medical professionals that look after you and let them know.

Norman Vandal 1:20:06
I told him about this feeling of dizziness and lightheadedness sometimes, and he said his explanation was. He said ‘Well, you know you’ve dropped 30 to 35 pounds. You’ve lowered your blood pressure substantially. Your A1C is lower, you’re getting used to functioning with less highs and lows of glucose, and he said ‘You’ve had a stroke.

Norman Vandal 1:20:48
And I also have stenosis in my aortic valve, which has not changed in years. It’s not symptomatic at all, and there’s no it’s very moderate, and he said ‘But you know, it could be that stenosis, under the circumstances, is causing you to feel lightheaded. So, I am trying to observe like I said ‘Let my Body Talk to me, to so that I can sort of feel it out, you know.

Norman Vandal 1:21:19
I can figure out the scenario or the triggers or what it is that causes it, and just having to do those things is both, it’s a blessing in a way, honestly, I really feel like it’s teaching me about my body and my brain and the way it functions.

Bill Gasiamis 1:21:43
Yeah, you touched on all the things that you learned from stroke earlier that you’re learning so much, and what’s the, what’s something that you’ve learned about stroke that’s really had a profound impact? What’s something that, okay, let me rephrase it. What’s something that stroke has taught you?

Norman Vandal 1:22:02
Something that what?

Bill Gasiamis 1:22:03
Stroke has taught you?

Norman Vandal 1:22:07
Well, in sort of, you know.

Bill Gasiamis 1:22:13
Philosophical kind of way.

Norman Vandal 1:22:15
Philosophical sense, it’s taught me a lot about fragility, I mean, I’m 75 years old and and I do not feel like an old man, I don’t. And I always my entire life, I’ve said I’m never going to walk like an old man. I’m not going to let myself walk like an old man. And I see friends of mine who are my age, and they’re walking like old men.

Norman Vandal 1:22:45
I don’t even with the stroke suffering, I don’t, and I’m proud of that. But at the same time, what it’s done is it’s taught me about this fragility and of life, and I’m sure it would have learned some of that also from just my age, but I’m aware and the monkeys on my back, and I know something’s going to get me.

Norman Vandal 1:23:12
I’d rather it not be a stroke and have to put my family under a lot of stress, and being capacitated that way. So I guess most of what it’s taught me is, but I don’t want to make it sound like it’s entirely negative. These are negative things that I’ve learned, but the positive things that I’ve learned too, I’ve learned about what inner strength I have to be able to do this.

Norman Vandal 1:23:43
I’ve learned about fear. I’ve learned about sorrow, I’ve been able to experience my body in ways I’ve never been able to do before, and I think it’s wonderful. I think a lot about the brain, and I never have before how the brain is wonderful and how it functions, and you know what, what it needs, and so on.

Norman Vandal 1:24:13
So, it’s been a learning experience for me in many regards, and I just hope that that’s true for a lot of people. That’s a common feeling, because I and, like I said ‘You know, I’ve recovered to the point of where most people watch me and they say, I can’t tell you how to stroke, and they say to myself, you can’t, but I can.

Bill Gasiamis 1:24:42
Yeah, compliment to you, but they’ll never what it’s like to be you, because they’ve never so we don’t want them to know anyway.

Norman Vandal 1:24:50
I’m not insulted by it or anything.

Bill Gasiamis 1:24:52
No, yeah.

Norman Vandal 1:24:53
yeah.

Bill Gasiamis 1:24:54
It’s better that they don’t know. As we wrap up, I’d like to ask you, to see if you can impart some wisdom on our listeners. There’s people that are listening that are your age, my age younger, going through something similar. What would you like to say to them?

Norman Vandal 1:25:13
Yeah, I’ve thought about this a bit. I think the main thing is something I’ve already touched on. Well, to preface it, I don’t really consider that the stroke that I had is as devastating as what a lot of people have. And I’m fortunate for that, for sure, and I know that the specter of having that as a possibility is there, but it wasn’t.

Norman Vandal 1:25:42
But I would say to people that I think that people need to get, people need to find a place where they can basically see the goodness in this too. You know what I’m saying, that it has, it has so many sort of side benefits that you’re not aware of before.

Norman Vandal 1:26:11
Like, how important friends are and family and the support that you get, and how important it is to learn to focus more on your body, and to learn more about your body and to know how to manage hope and fear. And because I sat in a bed thinking I and like I say, I wasn’t as bad as a lot of people condition, but I thought many times, I don’t want to live like this, you know.

Norman Vandal 1:26:40
This isn’t how I want to end my life. We have a Death with Dignity law here in Vermont, and I thought many times about how in order to to put that in place, you have to have cognition. You have to know what you’re doing. And I would think ‘Gee, I hope I don’t lose that, because if I have to make that decision, I want to know what I’m doing.

Norman Vandal 1:27:04
I’m not there, you know for sure, and I wasn’t there, and I didn’t go there. But it is an option for us here, but I think a lot of people find themselves in a situation where they can’t make that choice, but I’m I can, I can smile about about this, you know, I’ve been able, and smiling feels pretty good.

Norman Vandal 1:27:30
I can smile about it now, I hope that it doesn’t happen to me again. I’m going to do every, everything in my power to make sure that it doesn’t.

Bill Gasiamis 1:27:43
So silver linings. There’s some silver linings there.

Norman Vandal 1:27:46
Silver linings, exactly, yeah.

Bill Gasiamis 1:27:47
It’s a good thing to be aware of and to say, seek them out so to speak and to understand. And hey, Norman, I really appreciate you reaching out and being on the podcast.

Bill Gasiamis 1:27:57
It’s really great to have you on who had a great conversation and I am sure, as you requested in your email, that you sent me, I am sure that is going to make a difference in other people’s lives, and it will be very interesting to hear your story.

Norman Vandal 1:28:16
When I listen to your podcast, for me, what it was, it just became this ability to have, in a way, have my own conversations while your podcast was going on, and to hear from other people and their experiences and find that commonality, be just to be able to feel like I’m not alone, I need this, and I suspect that’s one of the main reasons why you’ve done what you’ve done.

Norman Vandal 1:28:43
But I really, truly appreciate it. I do, it’s a great thing that you’ve done, and hope you keep, hope you keep doing it, because people aren’t going to stop having strokes, unfortunately.

Bill Gasiamis 1:29:01
Unfortunately, not. I certainly am. Thank you so much for being on the podcast.

Norman Vandal 1:29:05
Well, if you ever find yourself in Vermont in the States, you come and you’re welcome to stay here and I’ll show you some beautiful country.

Bill Gasiamis 1:29:14
I’ll look forward to it one day, you never know what happens.

Norman Vandal 1:29:17
Never know exactly, never know.

Bill Gasiamis 1:29:19
You never know. Thank you for the for the invitation. Okay, all the best. Thank you so much.

Norman Vandal 1:29:25
Yep, thank you.

Bill Gasiamis 1:29:27
Well, that brings us to the end of another episode. I hope that Norman Vandal’s journey of surviving a basilar artery stroke inspired you as much as it has inspired me his determination to overcome the physical and emotional challenges of stroke recovery, and his insights into rehabilitation and life after stroke are truly remarkable.

Bill Gasiamis 1:29:49
Thank you to everyone who has already left a review. It helps others find the show and provides much-needed encouragement to stroke survivors. If you haven’t. Already, please consider leaving a five star review and sharing your thoughts on iTunes and Spotify, and for those watching on YouTube, remember to Like comment and subscribe to stay updated on future episodes.

Bill Gasiamis 1:30:15
If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke, every contribution helps bring more stories like Normans to people who need hope and advice on their stroke recovery journey.

Bill Gasiamis 1:30:32
Finally, if you’re a stroke survivor with a story to share, I’d love to hear from you. My interviews are relaxed and unscripted. Just come as you are, and if you have a product or a service related to stroke recovery, consider sponsoring an episode of the show, visit recoveryafterstroke.com/contact, to get in touch. Thanks again for joining me today. I look forward to seeing you in the next episode.

Intro 1:30:56
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before.

Intro 1:31:17
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, it’s called ‘Seven questions to ask your doctor about your stroke.

Intro 1:31:40
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.

The post Surviving and Recovering from a Basilar Artery Stroke: Norman Vandal’s Story appeared first on Recovery After Stroke.

Life after a stroke often presents a new reality for survivors, marked by physical, emotional, and cognitive challenges. Whether it’s adjusting to physical deficits, such as impaired mobility or speech difficulties, or navigating the emotional toll of such a life-altering event, the journey of recovery can feel overwhelming. However, with determination, support, and the right approach to rehabilitation, many stroke survivors find ways to regain independence and even discover new strengths.

In this post, we explore the common challenges faced in life after a stroke and offer guidance on how survivors can navigate their recovery while embracing hope and resilience.

A stroke occurs when the blood supply to part of the brain is interrupted or reduced, depriving brain tissue of oxygen. This can lead to significant damage, often resulting in long-term disabilities. The immediate symptoms may vary depending on the type and severity of the stroke, but common issues include paralysis on one side of the body, difficulties with speech, vision problems, and loss of balance or coordination.

The early days following a stroke can be critical for recovery, and immediate medical intervention plays a key role in minimizing the extent of damage. However, the challenges don’t end once the initial medical emergency has passed. For many survivors, the true work begins in rehabilitation and adjusting to life after a stroke.

One of the most challenging aspects of life after stroke is dealing with physical deficits. Many survivors experience some form of paralysis or reduced function, particularly on one side of the body. This can affect the ability to walk, use the arms and hands, or perform daily tasks like dressing or eating.

Physical therapy is often a cornerstone of stroke recovery, helping survivors regain mobility and function. Regular, targeted exercises can improve muscle strength, flexibility, and coordination, while adaptive tools such as walkers or special utensils can make daily life easier.

Progress may be slow, but every small achievement—whether it’s walking independently or regaining the ability to perform a once-routine task—can be a huge milestone in the journey toward recovery.

In addition to physical challenges, cognitive deficits such as memory problems, difficulty concentrating, or trouble with problem-solving are common after stroke. Survivors may also struggle with aphasia, a condition that affects the ability to speak or understand language.

To cope with these challenges, speech therapy and cognitive rehabilitation are essential components of post-stroke care. These therapies aim to retrain the brain to improve communication and thinking skills, helping survivors rebuild their confidence in daily interactions and regain a sense of normalcy.

Emotionally, the experience of a stroke can be overwhelming. Feelings of frustration, sadness, or anger are natural as survivors adjust to a new way of living. In some cases, post-stroke depression may develop. Seeking support from mental health professionals, stroke support groups, or loved ones can make a significant difference in managing the emotional burden of stroke recovery.

Adapting to life after stroke often means embracing a new normal. Daily activities that were once taken for granted may now require more effort or modifications. It’s common for survivors to feel a sense of loss regarding their previous level of independence. However, many stroke survivors discover that adapting to their new reality can lead to unexpected growth and resilience.

Setting realistic goals is a crucial part of recovery. While full recovery may not always be possible, survivors can focus on small, incremental gains that bring a sense of achievement and progress. With the right mindset, challenges can become opportunities for growth.

Recovery from a stroke is rarely a solo journey. The support of family, friends, caregivers, and healthcare professionals is invaluable in helping survivors navigate the ups and downs of recovery. Encouragement from loved ones can provide the emotional fuel needed to stay motivated, while healthcare professionals offer the necessary expertise to guide rehabilitation.

In many cases, connecting with other stroke survivors through support groups or online communities can provide a sense of camaraderie. Knowing that others have faced similar challenges and made progress can be a powerful source of hope.

Preventing another stroke is a primary concern for many survivors. After the first stroke, individuals are at a higher risk for future events, especially if underlying conditions such as high blood pressure, diabetes, or heart disease are not well-managed.

Lifestyle changes play a critical role in long-term recovery and stroke prevention. Eating a heart-healthy diet, engaging in regular physical activity, managing stress, and following prescribed medication regimens are all essential steps in maintaining health and reducing the risk of another stroke.

By staying proactive and prioritizing health, survivors can take control of their well-being and reduce their chances of experiencing another stroke in the future.

While life after a stroke may look different, it doesn’t mean the journey ahead is without possibility. Stroke recovery is often a marathon rather than a sprint, requiring patience, persistence, and adaptability. Each small victory, whether it’s physical, cognitive, or emotional, is a testament to the resilience of the human spirit.

For stroke survivors, recovery is not just about regaining what was lost but also about discovering new ways to live a fulfilling life. With a supportive community, the right therapeutic interventions, and a mindset focused on growth, many survivors find that life after a stroke is a new chapter filled with hope, strength, and the potential for continued progress

Stroke recovery is a long journey, but with determination, it’s possible to turn disability into ability. Learn how Polo Gomez is overcoming stroke deficits.

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Highlights:

00:00 Introduction
02:14 Symptoms And Initial Reactions
05:27 Stroke Caused By High Blood Pressure
11:31 Life After Stroke And Impact on Work and Family Life
17:39 Lifestyle Changes and Personal Growth
24:34 Back To Driving After A Stroke
34:26 Embracing The New Version Of You
41:17 Being Part Of A Stroke Community
48:33 Keeping The Positivity
55:49 Lessons From The Stroke

Transcript:

Polo Gomez 0:00
Hello everybody, and welcome to episode 323 of the Recovery After Stroke Podcast. Today, I’m thrilled to introduce Polo Gomez, an industrial worker from Pensacola, Florida, who is sharing his incredible story of resilience after suffering a hemorrhagic stroke.

Bill Gasiamis 0:20
Polo’s journey began while he was on a job site, suddenly experiencing the classic signs of stroke, including a drooping face and loss of mobility on his left side. What followed was a whirlwind of emergency intervention and months of rehabilitation. A Polo’s determination to regain his independence and strength never wavered.

Bill Gasiamis 0:44
In this episode, Polo discusses the emotional and physical challenges he faced as a stroke survivor, how he copes with the deficits left by the stroke and his journey toward recovery. He also shares how he shifted his mindset from frustration to gratitude, choosing to focus on what he could achieve rather than what he had lost. Polo’s story is one of grit, faith and perseverance, offering a powerful message for stroke survivors and their families.

Bill Gasiamis 1:13
Before we dive into Polo’s story, I’d like to remind you that if you find value in these episodes, and you’d love to see the recovery after stroke podcast continue, because you’re getting a lot of value as well personally, and you hope that other people will also find the podcast and get value from the podcast. Then you can support the show through Patreon, at patreon.com/recoveryafterstroke and be a part in confirming the success and the ongoing ability for me to record more podcast episodes.

Bill Gasiamis 1:51
Your support helps keep the podcast going and ensures that we can continue to share these inspiring and hopeful stories with our community of stroke survivors. Every contribution makes a difference, and I’m truly grateful for your support.

Bill Gasiamis 2:06
Polo Gomez, Welcome to the podcast.

Polo Gomez 2:10
Glad to be here.

Bill Gasiamis 2:12
Glad to have you tell me a little bit about what happened to you.

Polo Gomez 2:14
Well, I was out, I work, I travel a lot for work. So I do industrial solar, we do like Solar farms. We build solar farms, and I was working, and I was having a meeting and right when the meeting was over, some papers sent seemed to fell on the ground, they fell off my hands into the ground, so I sat down and picked them up, and when I picked them up, I just all of a sudden felt my face drop on my left side. So I stood up, I was still able to stand up and walk towards the office.

Polo Gomez 2:54
And I spoke to one of the engineers and I was like ‘Hey man, I think something’s going on. And I told them, she’s like ‘Why? And I told her, I said ‘Well, I think that my the left side of my face is drooping, and she’s like ‘Oh, I think it is. She’s like ‘I think you’re having a stroke. So she called 911, and they they made her, they made me do a test with my hands, and I guess I didn’t pass him they’re like ‘Yeah, he’s having a stroke. So they called an ambulance, the ambulance got me off of the job site, and then a helicopter picked me up and flew me to the to the hospital.

Bill Gasiamis 3:24
How far away hospital were you?

Polo Gomez 3:27
Probably about four to five miles away, but I got there pretty quick because of the helicopter ride.

Bill Gasiamis 3:35
And whereabouts were you in the in the in the area, a major city? Where were you?

Polo Gomez 3:40
Yeah, I was in Pensacola, Florida, so shout out to Sacred Heart Hospital, they were real, they acted fast, took real good care of me.

Bill Gasiamis 3:51
So other than that, Polo, did you notice any other symptoms, any other signs that something might be wrong, the days leading or the weeks leading to that day?

Polo Gomez 4:00
You know what couple couple days leading to that? Well, I would have some like, a slight headaches, but I thought it was because I had a toothache at one point, and I thought that’s what it was, so I would pump some Advils, and it would go away. But never did I feel dizzy or nothing, you know, nothing out of the norm. And then when that hit me, all of a sudden, it just, it kind of freaked me out.

Bill Gasiamis 4:27
What did you lose? Any of your abilities, your legs, your arms. Did anything stop working at the time just before you got to hospital?

Polo Gomez 4:38
No, my legs did because when she’s when that when my when my coworker sat me down, she’s like ‘Hey, I’m going to go get help, wait for me here. I was like ‘Heck, no, am I going to stay here? And I try to walk out behind her, and I went to the ground.

Polo Gomez 4:50
So yeah, my left side gave out, so I mean, they told me at the they told me at the at the hospital, that luckily they reacted that fast, they did. If not, I woulda, I woulda started losing my right side and maybe my vision and my voice. So, you know, I was very thankful, very blessed that, you know, nothing, nothing else happened more than what, what did take place? You know.

Bill Gasiamis 5:19
What kind of stroke was it?

Polo Gomez 5:21
It was a hemorrhagic stroke, hemorrhagic yeah.

Bill Gasiamis 5:27
And do they know what caused the bleeding?

Polo Gomez 5:30
High blood pressure.

Bill Gasiamis 5:33
Were you aware of the high blood pressure?

Polo Gomez 5:36
Yes, but since I, like I said, I travel a lot for work, I was out of medication, and I had to go get an evaluation so I can get more meds, and I didn’t make time for it. It’s not that I didn’t have time, that’s just an excuse, you know. I could have made time for it, but it’s just you don’t feel bad, so I’m like ‘Man, I could wait. Well, now I know that you it can’t, you know?

Bill Gasiamis 5:59
So you had high blood pressure for many years you’d been diagnosed.

Polo Gomez 6:05
No, couple months, yeah, a couple months.

Bill Gasiamis 6:12
Man, that’s full on, so you got diagnosed. How did they find that you had high blood pressure? Was just random checkup, or did you have a plan?

Polo Gomez 6:22
Yeah, it was a random checkup, I went. Because I was there was times where I’d get to my office and I’d get in front of my computer, and as soon as I’d get there, I’d get real like, I could not keep my eyes open. It just felt real tired. Sometimes when I’d be driving, I’d be driving perfectly fine, and then all of a sudden, I just get real tired. So I went and got a little checkup, and they told me, that’s what it was.

Bill Gasiamis 6:50
How old are you?

Polo Gomez 6:52
I’m 38 years old.

Bill Gasiamis 6:54
And how long ago did this happen?

Polo Gomez 6:57
This just happened, January 29th.

Bill Gasiamis 6:59
So not long ago.

Polo Gomez 7:01
Yeah, not long ago.

Bill Gasiamis 7:03
And how long did you spend in hospital?

Polo Gomez 7:05
A month, I was in there for a month. Then they, they released me, but I had to go to a therapy facility. So I went there for 14 days because they didn’t take my insurance, and it was we had to pay out of pocket, and it was like, like 27,000 for those 14 days, so there’s no way I could afford that. So I was there for 14 days, and then after that I got I started going to therapy.

Bill Gasiamis 7:31
So now we’re in August of 2024 it’s been about eight months, something like that, right? Yes, what are you recovering from now? What are you dealing with now?

Polo Gomez 7:50
Well, like I said, I’ve been, you know, I watch videos, I try to do a lot of researching, and, you know, and I’m aware that you get your, your the most of your mobility in the first six months and with an intense therapy. But I feel like my therapy was never really intense, but I can, I went into my physical therapy place in a wheelchair and you just, Friday was my last day, and I came out of there walking with a Hemi Walker.

Polo Gomez 8:22
You know, so my arm, I really haven’t gotten no much movement out of it, and that’s really what I’m trying to currently work on now, get more therapy on it. But you know, I’ve been told by a lot of a lot of different positions that to not expect a lot more out of my left hand, but I’m a firm believer, you know, and I feel like the man up above is the one that has the last say so, as long as I keep continue to put effort in it, effort into it, you know, I can get to where i i believe i can get to where I need to be.

Bill Gasiamis 8:54
Yeah, go for it, I also believe that nobody should tell you you shouldn’t expect anymore. It might be accurate, like statistically and all that kind of stuff, and I’m okay with that part of it, but what I don’t like about that statement is if the Polo’s of the world decide to take that for real and then not do anything to rehabilitate that at all, so you’re never going to know, because if you, if you make the decision to not do anything for that arm.

Bill Gasiamis 9:23
Well then 100% that arm will not recover, but if you’re going about recovery and you’re attempting to recover it, well there is a chance that it will do something, and that’s what I don’t like about doctors saying, don’t expect anything more from it, like it’s kind of, I know where they’re coming from, but I don’t think it’s appropriate, I don’t think it’s useful to say that to somebody.

Polo Gomez 9:46
Yeah, I don’t either, at first it kind of kind of brought me down, but then, like I said, I started thinking about it I’m like ‘Wait a minute, you know. The man up above is the one that has the last word, and as long as I try, I think if I put my mind to it. I’m able, I’m capable of doing whatever I put my mind to.

Intro 10:03
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, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 10:28
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 10:47
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide, It’s free.

Bill Gasiamis 11:06
Yeah, it could be a longer journey for that arm, right? It could take a lot longer than what we want, or whatever, but I don’t like it. I don’t like hearing that and then thinking that that might make somebody decide not to try at all, that’s the worst thing that can happen is you give up completely on that arm, and then you’ll get the result that the doctor said 100% of the time.

Bill Gasiamis 11:31
You know, so good on you. I like that attitude there Polo, so how did all this stuff impact your work? Like you go from being an installer of solar equipment and all that type of thing, and now you’re not able to do that work initially.

Polo Gomez 11:52
So I was a supervisor, but so it impacted me, because I used to have to walk the field and make sure everything was in in order, you know, in line, and well, I couldn’t do that no more, so I ended up being out of work for 180 days, and for legal purposes, they had to release me. So now, I don’t have a job no more. But, I mean, I can’t let it get me down, you know what? You gotta keep.

Polo Gomez 12:16
Continue to fight and then hopefully I keep it’s like I told my my therapist, I said, Listen, if I was to get 70-75% to me, that’s 100% because, you know, I don’t have that mobility in my arm, so 75 to me would be 100%. And that’s just what my goal is. Just try to get whatever I can out of it and continue on with my life, you know.

Bill Gasiamis 12:38
And with your family situation. What was that like? Are you married? You had family?

Polo Gomez 12:45
No, sir. I have a girlfriend that, luckily, she stayed by my side. She helps me out with whatever she can. My parents, I still have my eye to move back in with my parents. My parents and my brother, they’ve, I mean, they’ve been the world. They they’ve been there for me since day one, helped me out with everything. When they get home, they’re like, Alright, it’s time to get up and let’s, let’s start working on something, you know, so I got 150% back up from them.

Polo Gomez 13:13
So that’s also, I think that’s also a big, a big plus. You know, my friends, I have a lot of friends that never left my side. I mean, my hometown is like, 9 hours away from where I was, and when that occurred, my friends from back home were up there, you know. And since the day one, they, I got videos where they’re helping me out of the wheelchair, helping me walk, trying to get me to walk. So, I mean, I have a support from every direction.

Bill Gasiamis 13:43
There’s a lot of blessings there. Your very positive mindset, have you always been that way? Is that the kind of guy you always are, look for solutions, don’t focus on the problems?

Polo Gomez 13:54
Yes. I really try, I’m not a guy that stresses a lot about nothing. I feel like there’s always a way out of something, you know what I mean?

Bill Gasiamis 14:05
Yeah, I like that, man, that’s really really good. It is going to be up and down. You’re going to have setbacks, you’re going to have wins, you’re going to have things that you overcome, you’re going to have things that are harder to overcome. But if you keep focusing on the path forward, where the solutions are, then you’re likely to achieve them, you know, if you sit and focus on the problems, then you’re definitely going to have a ton of problems. You know, there’s going to be.

Polo Gomez 14:36
Yeah, sure definitely every life hasn’t been the same, you know everything. There’s a lot of things that change, as in like, what’s that word I’m looking for? Like self care, like I need help when I bathe, you know. But like I said, my brother and my father, they’re there 100%, you know, I don’t know, I can’t thank them enough, it’s crazy, independent, you know, be more independent, but I’m getting there.

Polo Gomez 15:11
Like I said to too many, where I’m at now might not be a lot, but, I mean, when I first got out of the hospital, I couldn’t sit up in bed. I as soon as they set me up, I’d go back down to either side. And now I can get when I got out of the 14 days that I was in that physical therapy place, I couldn’t use the restroom on my own, I couldn’t go to the restroom, now I go to the restroom on my own. So, you know, little things like that to me are big thing.

Polo Gomez 15:37
You know, when I when I’m laying, when I’m laying in bed, I try to move my arm, and when it moves a little bit to me, it’s, it means it all because I’m like ‘Man, I couldn’t move it at all. And I’m getting a little moving out of it. It’s crazy. It definitely made me value life a lot more. I’ll tell you that much, because I was, I’m, I’m not going to say I was a bad person, but I was a little wild.

Polo Gomez 15:57
You know, I’m young. I didn’t think twice about doing something dumb, I was crazy. I was a little wild on the wild side. Now, you know, it changed me. I look at things a lot different, I feel like I got a second opportunity at life. So, you know, I sure want to take advantage of it in a whole different way.

Bill Gasiamis 16:23
Alright, completely understand, now with the bleeding, how did they resolve it? Did they have to operate?

Polo Gomez 16:30
No, sir. Yeah they were able to stop the bleeding, and I went and got my second CT or MRI, and they said that everything stopped. So everything’s been, everything’s been going pretty well, I guess.

Bill Gasiamis 16:48
Yeah.

Polo Gomez 16:49
I didn’t know nothing about a stroke. So my my brother was telling me he’s like ‘Man, when you first got out the hospital, you were talking like nothing was wrong with you, like if you were just going to continue life. So I’m the wise, just didn’t know, I didn’t know what a stroke, you know, consisted of, or that I if I had a stroke, I couldn’t get up and walk the next day. So, you know, and still, to this day, I still try to be positive and be like ‘Man, you know, because at first it was rough.

Polo Gomez 17:14
I’m not going to lie to you, when I get out of bed, when I wake up in the mornings, and I’d wake up and, you know, look, turn around and look to my right in my wheelchair was there. I’m like ‘Man, it’s not the same, you know, when people you know, at first, I first, I was a little mad at the world, you know, because I’m like, Why me? You know. But now I think about it, and man, I much rather it happened to me than anybody out of out of my friends or my family members, you know.

Polo Gomez 17:39
So, you know, I wouldn’t want them to go through, nobody to go through this. It’s kind of crazy. But, like I said, I’m not happy that it happened. But it really was an eye opener. It made me look at at several different things, several different ways now. So, I mean, things happen for a reason, is what they say so.

Bill Gasiamis 18:00
And you remind me of me.

Polo Gomez 18:06
I was 300 pounds whenever this happened to me, and now I’m now I’m 270 so I’ve lost a lot of I’ve lost a lot of weight.

Bill Gasiamis 18:19
So you think the weight had a lot to do with the blood pressure?

Polo Gomez 18:23
That’s it, yeah, because, you know, people say stress, but I’m not a, I’m not a type of person that stresses. I don’t, if something doesn’t get done today at work, get away, if it don’t get done today or get done tomorrow. You know what I mean, I’m that type of guy, I don’t.

Bill Gasiamis 18:40
Did you smoke?

Polo Gomez 18:44
No, sir, I just drank. I used to drink, so now I don’t drink at all.

Bill Gasiamis 18:55
How much did you drink?

Polo Gomez 18:59
Well, it’s kind of crazy, because I wouldn’t drink during the week, and then I would drink on the weekends. But it’s like, I drink on the weekends. Whatever I didn’t drink in the week, I’d drink it in the weekend.

Bill Gasiamis 19:09
A lot of alcohol, so too much binge drinking.

Polo Gomez 19:13
Yeah, I used to party a lot. I was just like, I said I was, I come from a Hispanic family. You know, Hispanics, then they party for everything. So it’s just, you know like I said it’s putting down a lot.

Bill Gasiamis 19:29
You guys can still party, but you just have to do a little less of the alcohol stuff and the smoking stuff and all the stuff that perhaps people did. I get what you’re saying when everything is kind of a celebration and everything’s going good. You just figure, I can keep going, but you get to 38 and you’ve been doing it for 20 years, and then it’s kind of like, wow, like it’s catching up with me, and that’s what happens.

Bill Gasiamis 19:52
I got, I had my brain hemorrhoid when I was 37, so I was not doing anything terribly bad, but I’d smoke and drink, not a lot. But after smoking, I started smoking when I was 13, that’s a long time, man, you know, but if things catch up with you, and it seems like I’m still young, I’m 37 it’s not that much of a big deal, but I’ve been smoking since I was 13. Like, that’s a long time.

Polo Gomez 20:25
Yeah, no, I was drinking the same way, and then get up early. I drink till like two, three o’clock in the morning, then get up at six and go to work. You know, I was putting a beating on myself, I think.

Bill Gasiamis 20:38
Yeah, but yeah without knowing it, yeah.

Polo Gomez 20:41
And now I don’t, you know, people say, Oh, you can have a beer or two. I’m like, Nah, I’m too scared of of it triggering something, and have going through this again. I don’t want to take my chances over a drink of alcohol. You know what I mean?

Bill Gasiamis 20:54
That’s why I avoided alcohol for the first five years polo, and I had, maybe in the next, you know, in the sixth year, maybe I had one drink in six months, and I’m talking about literally one drink, and I’d be drunk by the end of the bottle, you know, because I hadn’t, I wasn’t used to it at all. And now it’s the same, we’ll go out for dinner or catch up with friends, we’ll go to a party.

Bill Gasiamis 21:18
People will come over, and I won’t drink unless I’m at my house and I don’t have to leave and go anywhere, and even then, I’m only going to have half a drink or one drink, because I lose my balance. The numbness gets worse on my left side, it feels like I’m having a stroke, you know? So what’s the point of that? I don’t enjoy it at all.

Polo Gomez 21:39
Yeah, now I don’t, what I do now is I drink like sparkling water just to make just to trick the brain, I guess, and be there hanging out, but now I don’t.

Bill Gasiamis 21:49
Yeah, I’m the same sparkling water with wine with, um, with a wedge of lemon or a wedge of lime and ice, just to make it look like it’s a drink.

Polo Gomez 22:00
And then, like I said, I have a very huge, huge group of supportive friends where they don’t try to peer pressure me. Oh, drink no, you know? Now, when they come over, they bring me sparkling water with a with a couple limes, you know? I don’t, so I don’t have that peer pressure, you know what I mean? Or, or they’ll call me ‘Hey, Is it okay if I bring some alcohol over there? Man, it’s fine. I don’t, I don’t crave it. I don’t, because I’m too scared, you know.

Bill Gasiamis 22:28
That is that’s perfectly fine, and it’s helping you lose weight as well, and the more weight you lose, the the lighter you’ll feel on your feet, and that hopefully will support your walking, and it’ll make it easier for you to get around and to rehabilitate the walking part.

Polo Gomez 22:45
Yeah, that’s, that’s what I’m working on. Like I said, I can walk with a Hemi Walker, and then I live like in the block, like in the block of my house, I live right in the center. So I used to only be able to walk from the house to a stop sign last-last week, I was able to walk around the whole block for the first time. So it’s coming, you know, slowly but surely, and little stuff like that motivates me.

Bill Gasiamis 23:09
Yeah, it seems little, but it’s big, man, it’s huge. You’re doing a great thing, yeah, by focusing on where you’ve come and where you started constantly, sort of reflecting back, look what I’m doing now compared to what I was doing a month ago or two months ago. That’s how you encourage yourself to keep going after recovery.

Bill Gasiamis 23:27
You know, that’s exactly the attitude that you need, any other attitude might get you there, but this type of version of, it’s small ‘I used to only be able to go to the stop sign, now I go around the block. That’s big, man. That’s not small, that’s huge, and people don’t realized.

Polo Gomez 23:45
At first, it was kind of hard. It was kind of hard because I was always, I always try to be the life of the party. I was always the loud, wild one. And then when this happened to me, I didn’t want to go out, because I didn’t want people like my brother would be like ‘Hey, man, let’s go out and eat. Neither one to because I didn’t we. We’re from a small town, so everybody knows everybody.

Polo Gomez 24:02
And I just didn’t want nobody to see me like this, you know, because it’s not me. And then I did have a couple friends that would go over and did it. As soon as they see me, they started crying. They’re like, man, I was just not used to seeing you like this, and but like I said, once I started getting a little bit of movements and starting doing this and being able to do that, like the other day, I was able to put my shoe on for the first time by myself. So to me, I’m like, Man, I send everybody a picture. Hey, look what I just did. You know, because it’s, it’s just, it’s crazy.

Bill Gasiamis 24:32
No, it’s huge, man, to be celebrating putting on your shoe on for the first time again. It seems like a a small thing. Most people don’t pay attention to it. And for you, it’s like a big achievement. When we got there, you know, you shoot independence, you know. What about driving? Did they take your license?

Polo Gomez 24:50
No, sir, they didn’t. Well, I haven’t, I don’t know how that works, they gave me a the handicap sticker, but nobody’s asked me for my license, or anything about my license, but the other day, like I said, I’m from a small town, and the my primary doctor is only about two miles away from my house, three miles. So my mom’s like, hey, you need to try to drive to see if you can drive. So she drove.

Polo Gomez 25:17
She rode with me, but I drove, and I got and I was able to do it right. So I got to the the clinic, and I was, I told my doctor ‘Hey, guess what? I just drove here, and she’s like ‘Well, who cleared you to drive? I’m like, I kind of cleared myself. I guess nobody told me not to, but no, I did well. So I don’t know if I’m supposed to talk to somebody about that or not, I don’t know how that works.

Bill Gasiamis 25:43
How did I know? Was there any problem with steering with one hand? I imagine that would have been the problem, you probably should adjust the indicator, the hand thing, you know the pole or a steering wheel.

Polo Gomez 25:58
No, I’ll be honest with you, no, because I’m right handed as it is, so that’s good. And not only that, but when I first started driving, I was always taught to use one foot so, you know, I used, it was it came pretty-pretty natural. I didn’t really have a issue. The only weird thing that was kind of funny is that I let go of the steering wheel one time because I thought my left hand had it and it didn’t.

Polo Gomez 26:27
But I caught on to that quick, and I’m like No But still, to this time I walk up to a door sometimes, and I feel like my left hand is the one that’s reaching to open the door, you know, to grab the doorknob, and it’s not so I don’t know that’s something I’m still trying to get used to.

Bill Gasiamis 26:46
Yeah, so that might be something that you need to consider when you’re driving. And you know, they had those adaptive knobs, you know, those knobs, they’re like a doorknob. They put it on the steering wheel and swivels so that you can turn the steering with one hand, and then they can adjust the cars in so many ways so that all the signals are in the right position for your hand. But it sounds like it’s mostly already Okay. The other thing is, it’s automatic, so you don’t need to change.

Polo Gomez 27:22
Yeah, and then you know, I’ve looked into all that stuff, but then I stopped myself. I’m like ‘No, wait a minute. I got to try to get back to my normal self, to where I don’t have to do any modifications, you know what I mean. So, it’s working out so far.

Bill Gasiamis 27:39
Yeah, slowly but surely. Look, it might be a good idea to get an assessment, but I don’t know what that means, I don’t know how it works in America, nobody came to me either and said ‘You’ve been through brain surgery. These things have happened. You can’t walk you can’t use your left side. You need to sit another driver’s license test, or Nobody did that with me either.

Bill Gasiamis 28:01
So about, I think it would have been maybe about two months after my brain surgery and being released from therapy, I came home walking also, and my left hand was working, but it wasn’t working 100% and I just jumped in the car and started driving as well, and I got really tired, I felt fatigued because of all the movement and all the things I had to concentrate on.

Bill Gasiamis 28:37
And my drive was quite a short drive as well, but it was something that I really needed to get used to. But it didn’t occur to me to go and get some professional help from a driving instructor for example.

Polo Gomez 28:54
Yeah, I’m gonna have to look into that. Because I don’t, I don’t. Nobody’s my doctor hasn’t even mentioned to me to go, you know, talk to somebody, but my brother, like I said, he’ll jump on with me, and I always go with somebody, I’m never by myself. But, you know, they, they come on so you can get, you know, used to driving again. So, you know, we go around the block, we go to town, stuff like small stuff like that, not no long trips or nothing, but no, I feel great on in that in that point.

Bill Gasiamis 29:27
Let’s pause here for a moment, but don’t go anywhere. We’ll be back shortly to continue Polo’s inspiring journey. Before we return. I’d like to take a moment to mention my book ‘The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s a guide to post-traumatic growth, not just through my own experience, but through the stories of others who have turned their stroke recovery into opportunities for personal transformation.

Bill Gasiamis 29:54
If you’re seeking hope and practical advice on navigating life after stroke, this Book is for you, you can find it on Amazon or visit recoveryafterstroke.com/book to learn more. Now back to Polo’s incredible journey of overcoming stroke deficits and finding new strength.

Bill Gasiamis 30:17
How about the rest of your energy? Do you get fatigued? Do you feel like you run out of steam during the middle of the day or by the end of the day,

Polo Gomez 30:25
You know what? No, not really, I mean, at first, yes for the first couple, the first couple months, yes, in the morning I I’d sleep in every day, but I didn’t have that much energy, but now it’s, I feel like I’m gaining that back. I started drinking that mushroom coffee, and it seems to give me a little bit of energy, and it, I mean, I feel, I feel pretty good, and so I also had a sleep apnea, and now I got my CPAP machine. So I even, I get rest, Oh man.

Bill Gasiamis 31:02
So you find a massive difference because of the CPAP. You wear it at night on your face at night, blows oxygen into your body, you wake up rested.

Polo Gomez 31:13
Yes and you don’t feel it the first night you use it, except for the first couple times you use it, I want to say the first week or two that you start feeling a real big difference.

Bill Gasiamis 31:26
So you know that mushroom coffee, Lion’s Mane, is it lion’s mane?

Polo Gomez 31:37
No, the one I drink is that rice.

Bill Gasiamis 31:43
Does it taste any good?

Polo Gomez 31:44
Yeah when I first drank it, I drank it by itself. It kind of tastes like dirt, but then they told me, they told me that I could add a little bit of creamer to it, and I had a hazelnut creamer. Oh, and it tastes great, I drink it every morning.

Bill Gasiamis 32:03
It tastes like the earth, right? I understand. I never had it, and I I’m not sure if I could, but if you can make it taste a little better with a little bit of creamer or some other.

Polo Gomez 32:16
Yeah, I use hazelnut. It tastes it tastes pretty good, yeah.

Bill Gasiamis 32:21
And why did you get onto that mushroom coffee?

Polo Gomez 32:25
Because I ran into it on social media a lot, and I said that it was good to make you focus and and to gain gain energy and help you with your with your sugar levels and stuff like that, because I was pre diabetic, so I tried it. I like it, and it helped. I mean, it feels good.

Bill Gasiamis 32:50
We could, since you’ve stopped drinking alcohol. Is the pre diabetes settled down as well?

Polo Gomez 32:56
That I don’t know. I haven’t gone to get new lab work. I’m due for it next month, I believe. So we’ll see what they tell me, then.

Bill Gasiamis 33:05
There should be an improvement, because, alcohol causes a lot of well, depending on what you’re drinking, actually, what were you drinking? Beer?

Polo Gomez 33:13
Yeah Beer.

Bill Gasiamis 33:16
That does impact diabetes levels and all that type of stuff. It probably makes a lot of things worse. The fact that you’re not doing that, you should have seen some kind of an improvement.

Polo Gomez 33:27
Yeah, so my big mistake, I think, was, like that day I got my stroke, I was like, three Red Bulls in that day.

Bill Gasiamis 33:36
Oh man.

Polo Gomez 33:39
So I’m pretty sure that did not help not one bit.

Bill Gasiamis 33:42
Not one bit, all the caffeine pumping into your veins after three bulls. I think it’s one Red Bull is I think, like the equivalent of four cups of coffee, and if you’re smashing three Red Bulls in a short amount of time, that’s like having 12 cups of coffee that’s impacting your heart, that’s impacting every system in your body, It’s increasing your blood pressure, your heart rate, man that’s tough.

Polo Gomez 34:08
The sad part about it. Is they didn’t even work. I didn’t get no energy out of them. I think it was just like a bad habit. That’s all it was a bad habit.

Bill Gasiamis 34:19
And you’re off them now as well.

Polo Gomez 34:21
Oh yeah, I don’t even look at it when I go to the store.

Bill Gasiamis 34:26
You’re a different man now, Polo.

Polo Gomez 34:28
Oh yeah.

Bill Gasiamis 34:30
You like the new Polo like you must? It sounds like you’re really proud of yourself.

Polo Gomez 34:35
I feel safer, if that makes any sense. You know, I was a like, I said I was a little wild. I was the type of guy that I never, I never looked for problems. It seems like the problems found me, I was the type of guy that I couldn’t stand. Anybody get bullied. So somebody was getting bullied, I’d jump. I didn’t care if I didn’t know the person, I would jump in and be like ‘Hey man, don’t mess with this person. And next thing you know, I’m I get caught up in fights.

Polo Gomez 35:06
And now I just think about it different. I don’t if I could gain movement in my left arm, because I was real nasty with my left arm, I can throw a punch, and I feel like, now, if I can get mobility in my left arm, that’s the last thing I would use it for. I just want to get right. First of all, my main priority, is to get right so I can do for my family like they did for me.

Polo Gomez 35:41
You know what I mean? So I can be there, be able to be there for them, how they work for me, and another thing I want to do is go back and just talk to people about strokes, you know, because if they were like me, that they don’t, they didn’t know nothing about it, It’s kind of hard, you know it’s, I couldn’t stand when people would tell me ‘Hey, man, it’s going to be okay. I’m like, How do you know you’re not going through this? You know, you don’t know what is, but now, you know, I understand they’re they’re just coming to you with the good intentions.

Polo Gomez 36:12
You know they’re not. But no, I just, like, I said, I’m just trying to. I’m just trying to be a all around, just be a better person. Be a better person with myself, with my co workers at work, and like I said about my number one priority is to get better so I can be there for the ones that were there for me at all times, you know?

Bill Gasiamis 36:38
Yeah, that’s a pretty good thing to achieve, man, to focus, to go after. So what’s interesting is, you have all this awareness about your previous habits, the way that you used to interact with people. You have that awareness now, before you were unwell, did it ever occur to you that maybe I need to settle down, take things easier, make a few changes. When you were quote, unquote, well, and your body was working, did you ever kind of reflect on your behavior and think and maybe I should change this?

Polo Gomez 37:12
I never thought of anything. I never thought anything like this could happen, you know, like, and it’s like I said at first I was mad at the world, I’m like, Why? Why me? But I’m like, why not me? You know, who am I? How am I any different than you or than anybody else? You know? It’s just sometimes I think it’s things you gotta go through in order for you to open your eyes and be like ‘Hey guy, you’re messing up.

Polo Gomez 37:39
And it’s, it kind of, it kind of sucks that it had to get to this extent, you know. But hey, at least they got another chance. What if I wouldn’t have been here, you know? Then there would have been no coming back. So, I mean, it’s a tough situation. You just gotta learn how to deal with it, you know.

Bill Gasiamis 37:58
Yeah if you didn’t make it, you wouldn’t had that opportunity to make things right.

Polo Gomez 38:05
Exactly, and that’s my goal, is to make things right.

Bill Gasiamis 38:14
That’s a good goal. So now what are you hoping to achieve in the next 12 months? Like, I know you want to get some movement back and all that kind of stuff, but you said you wanted to support people, talk about stroke, raise awareness. Like, what are you thinking about? Have you got any long term goals? Are you thinking about something 12 months out from now?

Polo Gomez 38:42
No, I have not really my main goal right now is to be able to get back to work, but like, you know, I feel like one thing that helped me a lot was, like, I said, I never knew anybody that had a stroke, that suffered a stroke, especially at a young age, and I felt like I was alone, and then I started looking into, like, on tiktoks and stuff like that. And I started looking in like videos and stuff like that, and I’m and I met some people that were my age that went through the same thing, and I reached out to him, and I spoke to him, and I’m not going to lie it, it felt different.

Polo Gomez 39:14
It felt good to be able to talk to somebody that can relate, you know, your age the same thing, that can relate to what you’re going through. So, I mean, I don’t know what what I plan on doing, but I do want to plan on doing something like that, so people know that they’re not alone, sometimes you just need somebody to talk to, and it does take a lot of weight off of your shoulders, and I can’t remember them, the gentleman’s name right off the top of his off of my head, but, you know.

Polo Gomez 39:38
It was cool that he reached back out to me when I when I messaged him, he read my message and reached back out, you know, not, not a lot of people do that, but he reached back out, and we conversated for a little bit, and he gave me a couple of, you know, a couple of ideas to do, you know, things to do, or whatever. So I would like to organize something like that, just so people know that they’re not alone, you can reach out to anybody and and somebody can.

Polo Gomez 40:04
Because when I was in that therapy place, a young lady there told me said ‘You know what you need, you need to talk somebody around your age, you know, that’s been through this. And then she asked another co workers, like, Who can we bring to him so he can talk? And he’s like, Well, nobody, he’s the youngest one in here. So, you know it’s kind of scary in the way, because you feel like you’re, you’re in here alone.

Bill Gasiamis 40:25
And it’s a small town, so there wouldn’t be a lot of people there that, yeah, have been through what you’ve been through. So all the other people around you, a lot older, maybe, what are they in their 60s and 70s? You can’t relate to that, that’s really hard, that’s usually what we think of when we think about stroke, we always think about older people.

Bill Gasiamis 40:45
And now, you’re 37 and when I was going through that, I was in a ward, and all the people around me were all elderly, you know, and they were really suffering from their strokes, and they were frail, and I couldn’t cope with it like I didn’t understand what is this, you know, what? What has happened to me? You know, how? How am I in the same place with these guys? It doesn’t make sense. I’ve never known anybody who’s 30 years old or 37 years old that’s had a stroke, and that’s my issue as well.

Bill Gasiamis 41:17
And I really reached out and tried to find a lot of people, local community, online, wherever I could. Being in the city, it was a bit easier because there was a lot more younger people that I found through the Stroke Foundation that was my age that had a stroke.

Bill Gasiamis 41:31
So I was also in need of that, and it sounds like a lot of people are in need of that, and that’s what this podcast does, It allows people like you and me to connect and share stories and understand each other and share our concerns, our frustrations, our fears, and get it off and just get it off our shoulders and just put it into.

Polo Gomez 41:52
You know what I thought about? I thought about that, about building some kind of making, some kind of podcast, or some kind of videos and interview like my friends, you know, because to me, I think I was very, very blessed to have the friends that I have, because they never, not because of my situation, they exclude me from anything.

Polo Gomez 42:13
They’re always there to invite me, to pick me up, you know, hold me up, like, if nothing was wrong with me, you know what I mean. And I know it’s not easy, like when I tell my girlfriend, she always invites me somewhere ‘Hey, let’s go here. Let’s go there, you know, let’s go to football games. And I’m like, No, you know, because I don’t feel like you should be the one pushing me in a wheelchair.

Polo Gomez 42:32
You know, it’s, it’s not your job. But you know, they didn’t take no for an answer, and they’re always been there for me, and they don’t mind pushing me in a wheelchair. It’s good to raise some kind of awareness like that, we’re like ‘Hey man, if you got somebody that’s, you know, close to you, be there for them, you know, because you don’t know, you know. And I’m talking from both sides, because I’m the person that needed the support, and I have the people that gave me the support.

Bill Gasiamis 43:02
You feel like, you feel like it’d be good to pay it back.

Polo Gomez 43:07
I mean, I just want to be right, in case somebody needs something, I’m there to I’m there for them as well, and they were there for me.

Bill Gasiamis 43:16
So did it make you? Did this thing make you kind of aware of your mortality that ‘Hey, I’m here for a short time of life.

Polo Gomez 43:28
Yeah, but you know what? It’s crazy. It’s crazy that you say that, because I used to tell my girlfriend all the time. I said ‘Hey man, I got a feeling something’s going to happen to me soon. Like, I don’t think I’m going to be here for this for for much longer. Like, I always had a feeling. I don’t know why, and it’s probably because of the way I was living. You know what I mean? Both physically and just in the everyday life.

Bill Gasiamis 43:54
Do you feel like that shifted now? Do you now not have that same feeling?

Polo Gomez 44:00
Well, I mean, even though it’s in the back of my head that this could happen again, but for the most part, like I said, I try to stay positive and think positive, and try to better myself so I can physically, internally and mentally better myself, not just for a couple of months ‘Okay, now I’m good. I’m ready to go again, back to my old ways. That’s not the plan, but like I said, I’m always been a type of, a type of person that I’m like ‘Man, I live my life.

Polo Gomez 44:31
I don’t like to I don’t hold no regrets, because I and especially now, you know, when somebody asked me, Hey man, you think I should do this? ‘Hey buddy, if that’s what you want to do and that’s what you feel, right? It is do it, because Tomorrow is not promised, or if it is, you don’t know if you’re going to be in the same shape you are today, I said ‘Look at me when I got my stroke that weekend.

Polo Gomez 44:54
I’m a type of guy that likes to, you know, go to Spanish concerts, and I like to dance. So I flew down from Pensacola to South Florida for a dance. I took my girlfriend, went to go dance that weekend. I flew back on Sunday, and I got my stroke on Monday. It’s crazy, one minute you can be dancing, the next day, you can’t even walk ‘Oh yeah, like I said, it makes you look at life a whole different.

Bill Gasiamis 45:25
That’s a 180 degree turn there, mate. That’s ridiculous, like flying, traveling, partying, dancing, enjoying yourself, wake up the next couple of days later in hospital, can’t move, can’t do anything.

Polo Gomez 45:39
And everything. It’s scary because this, this past year, my sister moved to Texas, so for New Year’s, we went to spend the night the New Year’s with my sister in Texas, and I remember when the, when the New Years came, hit. I told my parents, I said, Hey, that’s what I said ‘Hey, Dad, hey mom, hey. I told my brother. I said ‘Hey, man, this is going to be my year, this is my year.

Polo Gomez 46:04
I said, I’m going to, I’m going to make some big moves this year. And then couple days later, I felt like I was in the top, because I was doing real good with my job and everything I was on, I was on top, and then next thing you know, I was pretty much crawling on the ground. So, like I said, it’s a real big eye opener.

Bill Gasiamis 46:24
Yeah, you’re making moves, but in a different way, and it’s does still seem like you’re making big moves, you’re making big changes, you’re learning from the things that weren’t working for you. You you’ve achieved great things, you’re walking around the block now, you’ve put your shoe on for the first time. Like, they are big things, man, they just they look different, and they’re not the kind of big things that you probably thought you were going to do.

Polo Gomez 46:47
Yeah. So, like, I said it was a big setback, but then again, it was a big reset as well.

Bill Gasiamis 46:57
A reset so you see it as a reset, like there was something that needed to a switch that needed to turn off and one that needed to be switched on.

Polo Gomez 47:05
Yep, yeah, because I feel like we’re like, we’re computers as well. We’re like computers, there’s times where we’re going to shut down and reboot, refresh everything, and I think that’s what I needed. So, yeah, well, that’s how I see it now.

Bill Gasiamis 47:19
Yeah, were you spiritual, religious at all before that? Has that changed? Do you see things differently in that kind of space?

Polo Gomez 47:31
Yes, I’ve always been, I was raised in a Catholic family, but, so yeah, that’s what I’m saying, whenever they tell me ‘Hey, I don’t think you’re going to be able to move your arm again. I’m like ‘Wait a minute, man, who are you to tell me I can’t move my arm? And it just, that’s what keeps me going and I pray every day, because, like I said, it’s I think praying is one thing that’s that keeps you, prayers are very powerful, and it’s just one thing that keeps you, it takes a lot of stress off of me, I think.

Bill Gasiamis 48:12
It’s a good thing your identity. You know, you described yourself before the stroke. You’ve described a shift in your identity, but deep down, do you feel the same? Are you different? I know you’re different in your behavior, and some of the things that you stop doing, you stop drinking, you stop you know, mistreating.

Polo Gomez 48:33
No, a lot of people tell me, because, like, I said, I like to play around a lot, I like being a goofball, and a lot of people told me, like ‘Hey, man, at least you haven’t lost that yet. Because, and I don’t plan on too, because sometimes everything does get a little bit overwhelming, so you take it out on other people, and it’s like ‘I stop and think about, I’m like, man, it’s not their fault. You know what? I mean, but no, I like to keep a positive mind, I like to laugh, I like to make people laugh.

Polo Gomez 49:01
It’s just, and I that’s one thing I don’t want to get rid of, or I don’t want to change, because I think when if I talk to you and I make you laugh, it’s a good vibe, you’re going to be positive about things. If I’m sitting there and I’m being an a hole and just treating you bad, you’re going to get bad eyes off of me, you’re going to have a bad day. I’m a firm believer in that on and mentality. If you wake up in a bad with a bad attitude, you’re going to have a bad day. You know what I mean?

Bill Gasiamis 49:32
Yeah. So your personality is still intact. You still go about things the way you always did, you’ve just made a couple of changes, important changes, stopped smoking, stopped drinking, lost a little bit of weight, paying attention to different things that you weren’t paying attention to before being more grateful, sounds like you have a heaps of gratitude for things.

Polo Gomez 49:54
Exactly, I’m very grateful for, like I said, my friends, my girlfriend, and I’m very thankful for the first responders that got there, and because they’re the ones that saved my life, I am very thankful for the doctors, God bless in their hands, for them to save my life, pretty much, and I’m also very thankful for the for the young lady that reacted fast at work.

Polo Gomez 50:23
Because if not, you know, somebody panics, you’re not going to, you’re just causing more damage if you’re wasting time, and she reacted quick, so that’s another person I’m very thankful for, you know, because if it wasn’t because of her being brave and not panicking, things put a her pride could’ve got worse. You know what I mean?

Bill Gasiamis 50:41
Lot of things went your way, definitely, helicopter ride, everything kind of went your way, to get you to the hospital as quickly as possible, and deal with this thing pretty quickly. Do you recall how much time had elapsed between? I think I’ve got a droopy face to I’m actually in the hospital. Do you know how long it took?

Polo Gomez 51:02
It had been a good almost 2 hours, probably, or an hour 45 minutes to 2 hours. Because when I got that, I still went into that office by the time they she called 911, and they got there, and I mean, it sounds like a long time, but I think it was pretty quick, consider the circumstances I was in, you know what I mean, being on a job site, out in the middle of nowhere, so I think it was pretty quick.

Bill Gasiamis 51:29
Yeah, man, I thought it’s to be grateful for. I mean, I’ve said it before. I know people go through difficult times after stroke, very different versions of stroke, everyone has a stroke on a different spectrum, and the recovery is on a different spectrum, like, I totally get it, but there’s never been, there’s never been a more, from a medical perspective.

Bill Gasiamis 51:51
A better time to become unwell, because there’s so much they can do to help people, and so many people have been helped where you and I say 40 years ago, 50 years ago, you know, maybe it’s a different outcome, you know.

Polo Gomez 52:07
Yeah, but now I see people, I hear people say, or like, my brother will say ‘Oh, man, I don’t feel like going to work tomorrow. I’m like ‘Hey, man, enjoy it, because look at me, I wish I could go to work tomorrow, it’s just don’t take the least thing for granted.

Polo Gomez 52:31
Enjoy that you can walk, enjoy that you can work, provide, because it can be gone from one minute to another. So, I mean, there’s a lot of things to be grateful for, and there’s a lot of things to keep fighting for. You know what I mean?

Bill Gasiamis 52:47
Yeah, what was the hardest thing about stroke for you Polo?

Polo Gomez 52:53
Staying positive, not letting not letting it get me down.

Bill Gasiamis 52:59
That was the hardest part?

Polo Gomez 53:01
Yeah, that’s definitely the hardest part, because, like I said, I don’t know nobody my age that has gone through this to where you can relate, or you can be like ‘Oh no, it’s going to be okay, you know, that guy made it. You know, there’s nothing like that. It’s the same positive, you know, people would like said, I didn’t like to go out at first, because people would see you like that, I don’t want nobody seeing me like this.

Polo Gomez 53:22
I look at that, that guy, look he used to be this, this and that, and look at him now, you know, I just it was hard to stay positive, and then people will tell you ‘Hey, man, it’s going to be okay. don’t worry about but I’m like ‘How do you know, you know you don’t know what I’m going through.

Polo Gomez 53:36
But, like I said, they’re just coming to you, trying to come to you at a in a right, in a positive way, they don’t mean to, and but, yeah, I think that’s the most the hardest part is just to stay positive, not let it get you down, because if you let it get you down, you’re only hurting yourself really.

Bill Gasiamis 53:58
Yeah, it could be hard to get out of that situation, I do these podcasts and all these interviews, and at the beginning, especially when I first started, was to practice positivity and to try and share positive stories with people on the other side of the screen, because I also struggled to find, you know, to have those days where, where I got out of the negative cycle, you know, you haven’t gone to work for X amount of months.

Bill Gasiamis 54:26
You know, driving at the beginning, you know, people are picking you up, you’ve lost your independence, and it’s hard to stay positive, man, it’s really hard, and I used to try and have conversations about positive things so that I could forget about the negative stuff for a little bit while, and try and put the favor in the positive and in the gratitude part of it.

Polo Gomez 54:46
Yeah, no, like at first I couldn’t use I was like ‘Man, I got people wiping my butt, you know, that’s not cool. Grown man, wipe my dad, grown man, wiping my butt. Like, man, this ain’t cool, you know. But then I’ll, then I look at a different point of view, I’m like, man, well, I’m grateful that I have somebody to clean my butt and not, you know, be sitting there, you know, with pieces all over me. You know, it’s just but now that I can do it on my own, it’s a big deal for me.

Bill Gasiamis 55:18
Big deal, It’s a huge deal, and it’s also a big deal that somebody did that for you, isn’t it amazing that somebody actually did that for you after 38 years, you know, they’re wiping your butt again.

Polo Gomez 55:30
Yeah, my brother, is younger than me, and he would bathe me, and I’m, you know, at first, I was like ‘Man, this ain’t cool. But I was grateful to have them, to have that support and not leave me there for a couple days.

Bill Gasiamis 55:49
That’s love, that’s real support there, man, that’s like, unbelievable, that’s the best, I love it. What you’ve mentioned a few things already, but what has stroke taught you?

Polo Gomez 56:07
What do you mean?

Bill Gasiamis 56:08
Like what lessons have come out of stroke for you? I know you’ve already had a discussion where you’ve mentioned a few things, but like, what’s the one big takeaway from this whole experience? You know the one big lesson.

Polo Gomez 56:22
And like I said, to me knowledge to take care of myself, your health is should be your number one priority, don’t wait to go get a checkup, don’t, because you feel fine doesn’t mean you’re fine internally, go get checked out, now if I get a little headache or something, or if I feel something abnormal, I reach out to my doctor right away.

Polo Gomez 56:51
Hey, I got this going on, you know, I just don’t want, I don’t wait for nothing anymore, and I don’t plan on it anymore. It, you know, it’s just, that’s something I used to do. I have a little headache. I’m like ‘Ah, it’ll go away. I’ll pop some advil and that’s it, never thought my blood pressure was probably booming, you know?

Bill Gasiamis 57:10
Yeah, so there’s people like you and I listening to this now, kind of going through their own version of stroke and the recovery and all the challenges. What’s a little bit of wisdom you’d like to impart on them, or what do you want to tell them? What should they know about their experience?

Polo Gomez 57:30
Well, see another thing that happened with me is that was prior, a couple days prior to my stroke, I have a cousin that has the same age, he had a mini stroke, and after that, he’s like ‘Oh man, I’m done drinking, because we always, we all were our partners in crime I’m going to stop drinking. And it was crazy, I’m like ‘Oh man, come on, stop being a little wuss, you know. I didn’t, we didn’t think it was nothing crazy.

Polo Gomez 57:55
And then days later, I get mine, which one was a little bit more aggressive, but it’s just, I think the main thing, like, I tell my brother now I’m like ‘Hey, man, just take care of yourself, bud, don’t, leave them Red Bulls behind, because I’m telling you, Red Bulls don’t work, they’re just, it’s just a bad habit, it’s like a cigarette, it’s just a bad habit, you pick up and they’re not good for you.

Polo Gomez 58:20
I don’t even know why these people sell them, but my brother, he quit drinking Red Bulls one time we went to Texas and he picked one up because he was tired of the day. Don’t drink that, and he left it there, so he don’t drink Red Bulls no more, nobody does no more, really. Everybody’s around me is pretty much watching their watching taking care of more of their health now.

Bill Gasiamis 58:46
That’s a good outcome.

Polo Gomez 58:48
Yeah, everybody’s pretty much feeding off of it.

Bill Gasiamis 58:54
All I meant, I really appreciate you reaching out and connecting with me and also being on the podcast man, I love your attitude. I think your recovery is going to continue and you’re going to go far, and thanks for your time, and I just really enjoyed our conversation.

Polo Gomez 59:09
I appreciate the opportunity to appreciate the space on here.

Bill Gasiamis 59:14
Thanks for being on the podcast.

Polo Gomez 59:16
Yes, sir. I appreciate you.

Bill Gasiamis 59:19
Well. That wraps up another episode of the recovery after stroke podcast. I hope you found Polo’s story inspiring, as I did, from dealing with the sudden onset of hemorrhagic stroke to regaining his mobility and tackling the physical and emotional challenges of recovery, Polo’s resilience and determination are truly remarkable. If Polo’s story resonated with you, or if you have someone in your life who’s going through recovery, please share this episode with them, it could encourage them further.

Bill Gasiamis 59:52
A big thank you to everyone who has taken the time to leave a review on iTunes and Spotify this is very much appreciated. It is really important as it helps the podcast be found by other stroke survivors who are looking for this type of content. Your feedback not only helps others find the show, but it also provides a boost to stroke survivors who are looking for hope and practical advice.

Bill Gasiamis 1:00:17
If you haven’t already, please consider leaving a five-star review or subscribing on YouTube, where you can like comment and stay updated on new episodes. If you’d like to support the podcast further, head over to patreon.com/recoveryafterstroke, your contribution helps the show run and ensures we can continue bringing these important stories to stroke survivors around the world.

Bill Gasiamis 1:00:43
Finally, if you have a product or service related to stroke recovery or would like to share your story on the show, I’d love to hear from you, simply visit recoveryafterstroke.com/contact, and get in touch. Thanks for joining me today, and I’ll see you on the next episode.

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

Intro 1:01:30
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 1:01:55
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:02:20
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The post Life After Stroke: Polo Gomez’s Journey from Disability to Ability appeared first on Recovery After Stroke.

Introduction: Stroke recovery is often a long and challenging journey, especially when it comes to regaining mobility and independence. One of the most critical components of recovery is physical therapy after a stroke. Whether you’ve recently experienced a stroke or have been in recovery for some time, physical therapy plays a vital role in helping you rebuild strength, coordination, and confidence in your daily activities.

In this blog post, we’ll explore why physical therapy is essential after a stroke, the different approaches that can be taken, and how survivors can maintain progress over time.

When a stroke occurs, it can lead to significant physical impairments. These may include difficulty walking, using your arms, or maintaining balance. Physical therapy focuses on helping survivors regain these motor functions and improve their quality of life.

After a stroke, the brain undergoes a process called neuroplasticity, which means it can rewire itself to compensate for damaged areas. Physical therapy after stroke is designed to take advantage of this neuroplasticity by engaging the body in repetitive movements and exercises that encourage the brain to form new neural pathways. Over time, survivors may regain lost skills and improve their overall mobility.

1. Motor-Skill Exercises: These exercises are designed to improve coordination and strength in the muscles affected by the stroke. They often involve repetitive movements, such as lifting the arms or legs, that can help the brain relearn how to control these muscles.
2. Mobility Training: Stroke survivors may experience difficulty walking or balancing. Physical therapists use specific exercises and techniques, such as gait training and balance exercises, to help survivors regain their ability to walk independently.
3. Range-of-Motion Therapy: Stiffness and tightness in the muscles can occur after a stroke, limiting movement in the arms and legs. Stretching exercises and passive movement therapy are used to improve flexibility and prevent long-term immobility.
4. Strength Training: Physical therapists often introduce strength training exercises that focus on building muscle mass in weakened areas of the body. These exercises can include weight-bearing movements or resistance training.
5. Functional Electrical Stimulation (FES): In some cases, physical therapists may use FES to stimulate weak muscles through electrical impulses. This can help stroke survivors regain control of their muscles, improve movement, and prevent muscle atrophy.
6. Balance Training: Stroke survivors commonly struggle with balance and stability. Physical therapy often includes exercises to improve balance, which reduces the risk of falls and helps survivors feel more confident in their movements.

Recovery from stroke doesn’t end once you leave the hospital or rehabilitation center. For many survivors, physical therapy becomes a lifelong process that helps maintain and further improve their abilities.

Some benefits of long-term physical therapy after stroke include:

• Preventing muscle atrophy: Ongoing physical therapy helps keep muscles active and strong, reducing the risk of muscle atrophy, especially in areas that have been weakened by the stroke.
• Improving independence: As survivors regain strength and mobility, they become more independent in their daily lives, needing less help from caregivers.
• Reducing the risk of future strokes: Regular physical activity, guided by a physical therapist, can improve overall health by lowering blood pressure, maintaining a healthy weight, and improving cardiovascular fitness—factors that reduce the risk of a future stroke.
• Boosting mental health: Physical therapy can also improve a stroke survivor’s mental health. As mobility and independence increase, survivors often experience less anxiety and depression, which are common after a stroke.

Once formal physical therapy sessions end, it’s important for stroke survivors to maintain their progress at home. Here are some ways to continue the recovery journey:

• Home Exercise Programs: Many physical therapists provide customized exercise routines that survivors can do at home. These exercises are designed to strengthen weakened muscles, improve balance, and maintain flexibility.
• Joining Support Groups: Connecting with others who are also recovering from a stroke can provide motivation and encouragement to continue working on physical recovery.
• Engaging in Alternative Therapies: Yoga, swimming, and tai chi are great examples of low-impact exercises that can complement traditional physical therapy and help stroke survivors continue to improve their flexibility and balance.

Physical therapy after a stroke is one of the most effective ways to regain strength, mobility, and independence. Through targeted exercises, survivors can rebuild their physical abilities and improve their overall quality of life. The journey may be long, but with persistence and the right support, recovery is always possible.

If you or a loved one is recovering from a stroke, physical therapy offers a pathway to a better and more independent future. By sticking to your therapy plan and continuing with exercises at home, you can continue making progress long after the initial rehabilitation phase.

Physical therapy after a stroke is crucial for regaining mobility and independence. Learn how targeted exercises help stroke survivors rebuild strength.

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Highlights:

00:00 Introduction
03:45 Carmen’s Stroke Experience
09:42 The Importance Of Psychological Therapy
24:37 Physical Therapy After Stroke
30:01 Carmen’s Continued Recovery and Daily Challenges
44:40 Creating a Support System and YouTube Channel
50:25 Recovery After Stroke In All Languages
1:02:52 Lessons And Advice For Stroke Survivors

Transcript:

Bill Gasiamis 0:01
Hello everybody, and welcome to episode 322 of the recovery after stroke podcast. In this episode, I’m delighted to introduce Carmen Murrieta, the first stroke survivor from Mexico to be featured on the show. Carmen’s journey began unexpectedly when she experienced an ischemic stroke at just 34 years old. She shares her incredible story of resilience from being unable to walk to regaining her independence through physical therapy and a holistic approach that included meditation, yoga and a complete mindset shift.

Bill Gasiamis 0:38
Carmen also dives into the challenges of navigating the Mexican healthcare system, overcoming emotional struggles and the impact that stroke had on her personal life, her strength and determination are evident in how she has since turned her journey into advocacy, launching her own YouTube channel to connect with and support other Spanish speaking stroke survivors.

Bill Gasiamis 1:03
This episode is packed with valuable insights and inspiration, making it a must listen for stroke survivors and their families who are navigating recovery join us as Carmen’s story of hope and perseverance shows that recovery is possible even when it seems most difficult.

Bill Gasiamis 1:21
Now, just before we dive into Carmen’s story, I’d like to take a moment to talk to you about how you can support the podcast. If you find that these episodes are helpful, inspiring or insightful, consider supporting the show through Patreon, at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:41
Your support means the podcast can keep going, allowing me to continue sharing powerful stories that offer hope and practical advice for stroke survivors and their loved ones everywhere, whether it’s covering production costs or helping spread the word, your contribution makes a big difference, and I truly appreciate it. Thank you for considering it.

Bill Gasiamis 2:04
Carmen Murrieta, Welcome to the podcast.

Carmen Murrieta 2:08
Hello, Hello from the other side of the world.

Bill Gasiamis 2:14
Hola, Hola to you.

Carmen Murrieta 2:16
Hola.

Bill Gasiamis 2:19
It’s lovely to have you here, the first Mexican guest on my podcast.

Carmen Murrieta 2:25
Thank you. It’s an honor to be here.

Bill Gasiamis 2:28
I have had a Mexican researcher on the podcast before, who I interviewed, who was raising awareness and trying to support stroke survivors, the lady who I interviewed lived in, I think, in one of the border towns along the United States and Mexico, and she was doing some good work there, supporting stroke survivors who were predominantly Mexican speaking, and also a little bit of English or Spanish speaking and a little bit of English.

Bill Gasiamis 3:04
And it was lovely to kind of understand the the work that she was doing because of some of the challenges that the people at the border areas faced, and particularly with access to medical care, that was one of the really difficult things that they found accessing so I’m very keen to find out your story and what it’s like to go through the system that you have in in Mexico, but before we have a chat about that, tell me a little bit about what happened to you.

Carmen Murrieta 3:45
Well, I will tell you my story as I remember it. On August 16, 2012 I was at work in the morning, suddenly I got dizzy. I told my peers I feel sick. They asked me, How can we help you? And I asked them to call my mother, because that day, my ex husband was out of the city. At my mom’s house, I lay down, I drank a cup of tea, that afternoon, my ex husband went to pick me up and we went home.

Carmen Murrieta 5:03
The next day, I didn’t go to work because I was feeling better, but they’re still weak, so I stay at home, that was Friday. On Saturday, we were celebrating a birthday, and I started to drag my left leg while walking that night, we went to ER. They found nothing wrong, that was Saturday. On Monday, I could hardly walk, and we went to see a private doctor a nose, ear and throat specialist, because we thought that my balance problem had something to do with my ear.

Carmen Murrieta 6:16
The doctor said, Your ears are, were my ears were fine, so he recommended to visit a neurologist. We went to the neurologist, and he said, is a stroke, take her to the hospital with the current diagnosis, I spent one week in the hospital. Many tests were done on me, trying to find the reason of my stroke, a Blue test, MRI, CIAD scan. But finally, the doctors said it was brain steam, ischemic stroke.

Carmen Murrieta 7:18
At that moment, I couldn’t walk and my left arm, I couldn’t control my left arm. After that, I did a lot of physical therapy, and I changed my diet. I changed my mindset into a positive one. I practice yoga, meditation, Reiki, and in 2022 I created a YouTube channel, and that’s it.

Bill Gasiamis 8:11
That’s good, alright? So, lots of things. So you were 34 years old at the time, it was 2012 and it was an ischemic stroke. Do they know what caused the clock? What was the underlying reason? Any idea?

Carmen Murrieta 8:33
No, no, they told me, doctors told me it was an ischemic stroke with unknown reason. So I felt very confused, because I didn’t know what was a stroke. I didn’t know why, what happened to me. I ask, Why me? What did I do wrong and well, because they say they didn’t find a reason. I made a lot of changes in my life, like the diet, my mindset, my routine, my life changed a lot.

Bill Gasiamis 9:35
Yeah, how long did it take for you to leave hospital?

Carmen Murrieta 9:42
I was in the hospital, one week after that, I left the hospital, and I did a lot of physical therapy and occupational therapy. I been in psychological therapy too many times.

Bill Gasiamis 10:07
Fantastic. Me too, and I still go to therapy. It’s very important for people to go to therapy, right, especially when everything is normal, everything is okay. And then at 34 I was 37 Okay, so and my injuries happened in 2012 as well. That’s when it all started for me, especially when you’re good for 34 years, everything isn’t going normal, and then you have a stroke, and they can’t tell you why it happened.

Bill Gasiamis 10:38
Of course, you need some therapy and some counseling to try and work it out in your head and understand what is going on. Why me and did I cause this? Can I make it better? Will I be okay? All those questions going through your mind.

Carmen Murrieta 10:56
Yes, yes, it took me many years to understand my new me, because my new myself, because I didn’t know what to do, how my body will respond to so many changes now that I didn’t know what can I do and what I can do?

Bill Gasiamis 11:31
Yeah, what kind of challenges did you have when you came out of hospital and went into rehab? What were the physical problems that you had to deal with?

Carmen Murrieta 11:38
I think, well, many, many, many things. But main thing was, I couldn’t walk. I was on a wheelchair. It was very, very hard to learn walking again, and at first I was like a spider crawling.

Intro 12:17
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, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask.

Intro 12:41
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 13:00
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.

Carmen Murrieta 13:20
My hands to balls because I was very afraid of leaving them, yes, and I didn’t move my left arm. Well, yes, it moved, but I couldn’t control my left arm. In fact, now my left side is weak.

Bill Gasiamis 13:58
A little weak?

Carmen Murrieta 14:00
Yes, I can walk now, but I use cane to walk.

Bill Gasiamis 14:09
Just for a little bit of extra strength and stability.

Carmen Murrieta 14:13
Yes.

Bill Gasiamis 14:16
At the time 34 were you still married then? Or what was the family situation like?

Carmen Murrieta 14:24
I was still married, then two years later, I divorced.

Bill Gasiamis 14:36
And do you have children?

Carmen Murrieta 14:38
No, suddenly I was divorced. I couldn’t work, I didn’t have care, so I was very, very, very sad, yes.

Bill Gasiamis 14:55
You were very sad was that one of the reasons behind the divorce is, what you’re saying?

Carmen Murrieta 15:03
No, I don’t think so we, my ex husband and me, didn’t get along very well before the stroke.

Bill Gasiamis 15:17
So it was just one of those things that was part of the relationship, it was a bit of a problem already, and then when you had the stroke, did it feel like the relationship got worse? Or was it just a decision that was made because you guys had been putting it off?

Carmen Murrieta 15:41
I see it got a little bit worse, because I was having all that changes in my body, and I didn’t understand what was going on, and he was trying to help me, but I was so different now. So now that I have talked with many survivors, now I understand that emotionally I was, I don’t know I wasn’t okay, and he wasn’t okay too. So how could that marriage work with the persons feeling like that?

Bill Gasiamis 16:38
Yeah, I think what you said is very profound, so if the relationship is a little bit difficult already, and then somebody in your relationship becomes unwell, and you’re already dealing with all of those difficult situations, stroke only makes things harder, so if the relationship is not stable, to continue the relationship and make it more stable, It’s very difficult, especially when you’re learning about your new body, all the challenges that you have to overcome the difficulties that that causes to the family income wise.

Bill Gasiamis 17:16
All those things like, it’s such a big challenge and it does need, it does need a stable relationship to continue fighting the recovery, you know, and overcoming all of the stuff that stroke causes, I know many people who have had a stroke who, as a result of the stroke, made the decision to separate or have a divorce, because there was no point being in that difficult situation together and making it more difficult. Was it still a hard thing for you to actually go through with the separation, or was it the logical thing to do, was it the correct thing to do after the stroke?

Carmen Murrieta 18:06
It was logical, but it was hard to make that decision because, because he was my friend, so it was hard.

Bill Gasiamis 18:26
Yeah, so there was still a mutual respect.

Carmen Murrieta 18:32
Yes, and I think he had, he helped me as much as he can kick with and, well, finally, it didn’t work, but we respect each other and, well, I wish he I wish him the best.

Bill Gasiamis 19:02
Yeah, that’s the best way to do it. Sometimes it’s not necessary to be together with somebody, if you are struggling in a relationship to respect each other, you can also do that separately, and especially if you’re not causing each other challenges and grief, and you can be civil, that’s still really important, that’s a good way to go about it. In the at 34 how were you occupying your time? Were you employed before the stroke? What were you doing?

Carmen Murrieta 19:34
Yes, I was employed, I was, I studied computer science, so I was working in an office as a webmaster.

Bill Gasiamis 19:49
As a webmaster, building websites?

Carmen Murrieta 19:52
Yes.

Bill Gasiamis 19:55
And of course, you became unwell, and then what happened with work were you able to eventually get back to work?

Carmen Murrieta 20:03
No because the office, it’s far from my home, and I couldn’t drive after my stroke. It was, I wasn’t me, so I didn’t go back to job, because I don’t know, and also I didn’t want to go back, actually, because it was like, the same every day. So I think in a way, it was good to leave that job.

Bill Gasiamis 20:57
So it was a little bit monotonous. You didn’t really enjoy it much while you were there.

Carmen Murrieta 21:02
Yes, yes.

Bill Gasiamis 21:04
So the stroke gave you a way out of there?

Carmen Murrieta 21:08
Yes, and the the environment, I don’t know how to say, and I didn’t like it very much the they were kind of a lot of gossiping in the work place.

Bill Gasiamis 21:30
Culture, that culture.

Carmen Murrieta 21:32
Yes, I wasn’t very, very happy. If they hear this, they will be mad with me, perhaps.

Bill Gasiamis 21:45
Well, maybe they’re not listening. That was a long time ago, maybe they have improved, and they’re not such gossips anymore.

Carmen Murrieta 21:54
I hope so.

Bill Gasiamis 21:57
Okay, so it was a difficult work environment, and it was nice not to be there. Yeah, fair enough. What in the part of Mexico where you live, what’s the medical system like? These are easy to access medical help?

Carmen Murrieta 22:14
My job gave me some benefits so I could, I I could access National Health System, which, know many people have access to it, but the National Health System, it’s saturated and they don’t have equipment in all hospitals when I needed the embryo MRI and the CAT scans, I have to to go to a private place, they transported me in an ambulance, and we have to pay the service in order to have those emerging image studios, yes.

Bill Gasiamis 23:29
Do you have to pay upfront? or do you go and have the scans and then they send you the bill? How does that work?

Carmen Murrieta 23:41
No, you you pay the scans, and they give you the scans, and then you took them to the doctors.

Bill Gasiamis 23:53
If you don’t have money to pay for the scans, what happens?

Carmen Murrieta 23:58
That’s very complicated for some people, because they have to wait or to find help from government or from friends, and they have to find them to get the money and pay those scans.

Bill Gasiamis 24:26
No money, no scans.

Carmen Murrieta 24:28
No.

Bill Gasiamis 24:30
Yeah, that’s very sad.

Carmen Murrieta 24:34
Yes.

Bill Gasiamis 24:37
So once you have the scans, then do they send you back to the correct to the hospital which you started at, or do you stay there? What happens there? How did you that’s a lot of traveling for somebody who’s unwell, to leave one hospital to go to another hospital.

Carmen Murrieta 24:54
Yes, it could be very, very uncomfortable, but I stayed in the same hospital. They just checked my blood pressure and my signs, and that was it. After I leave the hospital, they gave me physical therapy and occupational therapy.

Bill Gasiamis 25:31
And was that as a result of the fact that you had some benefits because of your work, is that what about the costs of those therapies?

Carmen Murrieta 25:42
No, I didn’t have to pay nothing, nothing, the National Health System is free.

Bill Gasiamis 25:52
Let’s take a quick break here, but we’ll be right back with Carmen’s inspiring story in a moment before we continue, I want to remind you about my book, The unexpected way that a stroke became the best thing that happened. It’s just it’s not just my personal story. It’s a guide to post traumatic growth filled with insights from other stroke survivors who turned their recovery into a journey of growth and resilience.

Bill Gasiamis 26:18
If you’re looking for hope, practical advice and real stories of overcoming adversity after stroke. This book is for you. You can find it on Amazon by searching my name, Bill Gasiamis, or you can head over to recoveryafterstroke.com/book, for more details. Now, let’s get back to Carmen’s incredible journey.

Bill Gasiamis 26:41
Okay.

Carmen Murrieta 26:42
That’s something good when you have it, but when you don’t, it’s a problem.

Bill Gasiamis 26:51
Okay, so you had access to physical therapy, and that wasn’t something that you had to pay for.

Carmen Murrieta 27:02
During a period of time, I didn’t bait, but my family, they noticed I needed more therapy, so after one month, they gave me just one month of physical therapy, then I had bait and.

Bill Gasiamis 27:33
Private.

Carmen Murrieta 27:34
To receive my more physical therapy.

Bill Gasiamis 27:38
Okay.

Carmen Murrieta 27:39
And also I went to it’s like center when where they help poor people or people with disabilities, and I went there to get some therapy too, but for only a few months, because it was very, very far from my house. At that time, I was at my mom’s house because I couldn’t be independent, for some months after that, we came back home.

Bill Gasiamis 28:42
So in order to be cared for, you stayed with your mum to have some support, extra support.

Carmen Murrieta 28:53
Yes.

Bill Gasiamis 28:54
Yeah, so when you finished the therapy, when you left hospital, you left physical therapy, you went back to your mom’s house?

Carmen Murrieta 29:08
No, after one week in the hospital, I was one month, I was at my mom’s house, and I had to go to take physical therapy to the hospital, from my mother house to the hospital every day, from Monday to Friday, I went to.

Bill Gasiamis 29:39
How long did it take you to go one way? How long did the trip take from your mom’s house to the therapy?

Carmen Murrieta 29:49
15 minutes more or less.

Bill Gasiamis 29:54
Okay, so now there’s been quite a lot of time that has passed, 12 years have passed.

 
Carmen Murrieta 30:01
Yes.

Bill Gasiamis 30:01
Are you still recovering? Are you still improving? How are things now compared to what they were like at the beginning? What’s better than before?

Carmen Murrieta 30:14
It’s better that I can walk, that’s that’s something good. I can move my hand, my left hand, but as I said, my left side is weak, and so I’m more in control of my body, but still, my fine motor skills are not very good, for example, if I try to do this.

Bill Gasiamis 30:50
Put your finger on your nose.

Carmen Murrieta 30:53
And this one, it’s easier. Right side, easier left side.

Bill Gasiamis 31:03
Okay.

Carmen Murrieta 31:03
Yes, so I still do therapy physical exercises every day, because I want to, I want to prove something, or at least stay the same. And I also have problems with my eating. I had a lot, a little bit dysphagia, so I only eat soft meals, I don’t eat spicy foods, liquids are very difficult to take to drink.

Bill Gasiamis 32:00
Swallow.

Carmen Murrieta 32:02
Swallow, and I also speak very slowly in Spanish too, so in English, it’s twice difficult.

Bill Gasiamis 32:16
Even more slow. Okay, so before you used to speak faster.

Carmen Murrieta 32:23
I don’t. I can’t remember. Well, yes, and I didn’t get tired of talking. For example, after I after this conversation, I won’t speak a lot, and during, every day, every day I speak, I don’t speak very much because I can’t.

Bill Gasiamis 32:58
Does it make your brain tired?

Carmen Murrieta 33:01
No, my I don’t think my brain, but my throat is like, I have to clear my throat frequently when I’m eating, while I talking, all the time, and I feel something here all the time, especially in my left side, and well, at first, doctors never mentioned the dysphagia, and I thought I was, I was, I don’t know, I thought it was psychological in my mind, something in my mind was creating this, but now there is a name for this. When I created the channel, I knew about the Aphasia and Dysphagia, and I finally understood what happened to me, yes.

Bill Gasiamis 34:19
So you had a lot of a very common thing that happens with people who have a stroke, sometimes their muscles in their throat, in their neck stop working effectively because of the stroke, and as a result, then they struggle to swallow and eat, and it can be dangerous, because if they can’t swallow properly, they might choke, etc. But the other thing that you mentioned that you feel like there’s something in your throat all the time, which is not there, that would be difficult to deal with at the beginning, you’re trying to work out, is there something there?

Bill Gasiamis 34:54
Do I have to clear my throat again? Is there something stuck? It would be very difficult to, to work that out. How, who was it that said you might have dysphagia? Did somebody tell you about that? Did you go to another appointment? How did they work it out?

Carmen Murrieta 35:10
And now I went to another neurologist, and he explained that the stroke damage some muscles here, and I finally understood I also went to the throat especially he analyzed my throat with something here.

Bill Gasiamis 35:49
A camera in your throat.

Carmen Murrieta 35:50
A camera and they said, my throat, it’s okay, and maybe I should see a psychologist, because, I got anxious, and then I went to psychological therapy, and I think I’m better, the symptoms are there, but I manage them better now.

Bill Gasiamis 36:34
You think about it differently now, Now that you understand they’ve had a look with the camera, there’s definitely nothing there, it’s damage to your muscles because of the stroke and you can have a your mind, you can ease your mind a little bit. You don’t have to be anxious about it.

Carmen Murrieta 36:55
Yes.

Bill Gasiamis 36:56
Even though it still does the same thing.

Carmen Murrieta 36:59
Yes, sometimes it’s still difficult, but then I remember my but it’s actually okay, but I must relax and take it easier. So I can manage that way.

Bill Gasiamis 37:29
Is, have you been able to transition back to an occupation now? Are you at work these days?

Carmen Murrieta 37:37
No, I’ve been struggling with that because I want finite job or something that that I need an income, but I also have many physical difficulties, so I struggle, struggle with that. I have noticed that there isn’t many opportunities for people with disabilities, they say yes, but there are works that jobs that I can do, because you had to, for example, they offered me to sell things.

Carmen Murrieta 38:39
I’m not good at that, and I don’t like it, and I had to speak a lot, and I get tired of talking, so I had to say no. And now in addition to all my stroke consequences, I also have an eye condition that it’s called dry eye. Have you heard from that?

Bill Gasiamis 39:11
Dry eye?

Carmen Murrieta 39:11
So dry eye and I can’t spend a lot of time in front of a computer because my eyes start watering, or my head pains, then my balance is not good, so it’s difficult, it’s been difficult.

Carmen Murrieta 39:11
The dry eyes. Is that a condition that happened because of the stroke, or is that a separate condition?

Carmen Murrieta 39:48
Separate condition.

Bill Gasiamis 39:50
Yeah. And does it affect both eyes, not just one eye.

Carmen Murrieta 39:56
Both eyes.

Bill Gasiamis 39:58
And Is it painful in your eyes? Do they actually go dry, like they don’t have liquid, or do they have too much liquid?

Carmen Murrieta 40:06
They have liquid, I don’t know if is it much, but yes, it pains sometimes. So I can’t watch TV, I can’t use cell phone or my computer. It’s hard for someone that studied computer science and I cannot use my computer.

Bill Gasiamis 40:39
Yeah, that would be that would be, that would be very challenging, especially if you have a skill that’s really that you’re very capable with, and so much of life is on computer screens these days. You know it really.

Carmen Murrieta 40:54
Yes, yes.

Bill Gasiamis 40:56
Requires you to be able to focus and concentrate for long hours. So how do they support you with the dry eye condition? Is there anything that they can do, or is it not something that can be supported?

Carmen Murrieta 41:10
Well, I do many things, like I use tears medicine, I don’t know how to say.

Bill Gasiamis 41:26
Tears, like from a bottle.

Carmen Murrieta 41:30
Yes, and I use high contrast in my computer. In my cell phone, I use zoom if you see my computer, the letter it’s fonts are like, really large, and my my cell phone too, and I wear a special glasses, these ones, they block blue light. I also have a filter in my computer. What else, I don’t use computer for long periods of time, actually, too many things, and the doctor recommend that still, I get tired of my eyes.

Bill Gasiamis 42:35
Yeah, it’s still very tiring.

Carmen Murrieta 42:38
Yes.

Bill Gasiamis 42:40
Neurologically, after a stroke, the eyes often struggle with different you know, with lighting, I still get sensitive with the light, depending on what type of light it is. I think the worst time of the day for me is when there’s a lot of clouds and you can’t really see the sun, but it still makes a lot of glare. You know, it still, it still feels like it’s very difficult on the eye, even though it’s not sunny, you know, you still get some strange light coming through all the clouds, that’s the hardest time of the day.

Bill Gasiamis 43:16
So I’ll be driving my car or walking around with my sunglasses on and there’s no sun out, and it’s the hardest time of day, really affects my mood, it affects my emotions. It really makes me feel down, and I always look forward for the sun, which is quite normal anyway, but the cloudy conditions are really difficult for me. If we have cloudy conditions for a few days in a row, I really notice it by the end of the second or third day.

Carmen Murrieta 43:53
Yes, it it’s the same for me, I sometimes, well, for example, I never use computer in the morning because the light is very strong so I don’t use it, at the sunset it’s better for me this time it’s working very good for me, because it’s dark outside. Well, here it’s the night, 7-8pm so it’s good for me, darkness is good for me.

Bill Gasiamis 44:40
Darkness is better for you, yeah. Okay, so you started a YouTube channel. What do you hope to achieve with it? And what are you posting on there? And it’s in Spanish, correct?

Carmen Murrieta 44:58
Una EVC en mi vida, I was trying to find more stroke survivors because I didn’t know any stroke survivor all the examples of stroke victims I knew about, were people who had died, so I was feeling very lonely, and also the information that I was finding in the internet at that time was very technical, so I was I needed something easier to understand and also I needed something to do instead of feeling sorry for myself. So that’s why I created the YouTube channel, and now I have many strong survivors, many friends.

Bill Gasiamis 46:25
Yeah. So what does the name of the channel mean?

Carmen Murrieta 46:31
Una EVC en mi vida.

Bill Gasiamis 46:36
What does it mean in English?

Carmen Murrieta 46:43
me, EVC means several vascular disease, I don’t know exactly how to translate, but it and EVC happens in my life, something like that.

Bill Gasiamis 47:09
Okay, so you’re discuss. So what it says is, it’s describing the condition that happened to you.

Carmen Murrieta 47:18
Yes.

Bill Gasiamis 47:19
Okay, all right, so EVC is an abbreviation. It, it’s not the full word, what? What does? What are the words in Spanish for EVC? What is the word?

Carmen Murrieta 47:34
E it’s Enfermedad, disease. And V stands for Vascular, and C means Cerebral.

Bill Gasiamis 47:56
Okay, so somebody who has your similar experience was looking for people that have been through what you’ve been through again, probably like you, looking for a community. More people to connect with, more people to learn from. Will be able to go to that website. What type of videos do you do? Are they interviews? Are they information, videos? What kind are they?

Carmen Murrieta 48:27
Interviews, I have talked with neurologist therapits and stroke survivors, caregivers, that’s it.

Bill Gasiamis 48:44
That’s lovely, so you have at the moment, it says there’s 82 videos, and they’re all different lengths, some of them are 40 minutes, some of them are 4 minutes, lots of different people, you have an episode on dysphagia in Spanish, which is amazing, and you have episode on Neuroplasticity, you have a really good mix of videos.

Carmen Murrieta 49:20
Yes, I have tried to cover the main topics of something that had a stroke, and to understand those topics. And also give hope through testimonies of survivors and let people know that recovery it’s possible.

Bill Gasiamis 50:00
I love it. You’re doing exactly what I’m doing in Spanish, you’re doing it in Spanish, fantastic.

Carmen Murrieta 50:04
I didn’t know you till after I created the channel. I found you, and I thought one day I will meet Bill and yeah, here we are.

Bill Gasiamis 50:25
It’s so good that you reached out. I really appreciate it, and you know what’s lovely is that I can’t do all these other languages. It’s impossible for me to do Spanish, Italian, even I can speak Greek. But even finding people to do interviews in Greek is even that is very difficult. But the good thing about a lot of people who are from other countries, many people speak English, so I’m fortunate that we can still reach people who speak English. But of course, it’s my wish that there’s more people like you and me doing their own language recovery after stroke podcast.

Bill Gasiamis 51:08
You know, I hope there’s an Italian one, I hope there’s a Greek one, I hope there’s every version of it. I think it’ll be fantastic, because that’s very important, it’s what we’re missing. And when I started doing it, I was like, You, I wanted to occupy my time with something important, something worth doing, you know, something that was going to be useful for me and for other people, so you, you have found a really good thing to occupy your time with. Now, do you edit the video and do all the things to get it ready and upload it. Is that how you do it?

Carmen Murrieta 51:50
Well, when I created the channel, I didn’t know anything about editing videos for internet. I didn’t know nothing, so I was asking if somebody could help me. But, I didn’t find anyone, so I thought, how can hard it could be? So I started and, well, I think I did it fine, I don’t know if that’s what you wanted to know.

Bill Gasiamis 52:46
Yeah, that’s it. I wanted to know how you started. The videos there are edited, they have good thumbnails, everything about it is, is perfectly fine. You have subscribers. You have 430 subscribers. I imagine people also leave comments and let you know what they think of the video or ask questions.

Carmen Murrieta 53:13
Sometimes they leave comments. I think no many people have seen my videos, maybe, maybe they don’t know me yet, and well, my audience is a small audience, but I love to do videos and explain what is a stroke, because when it happened to me, I didn’t understand what was a stroke.

Carmen Murrieta 53:57
And in Spanish, we have so many names for stroke that one gets very confused about it, because you don’t know where it was this or that or that, because there are so many words for a stroke that you can you can know, you can understand what, what it says stroke and yes, I through, my through my videos, I tried to let people to give people knowledge and hope about the stroke.

Bill Gasiamis 54:49
Yeah, in your channel, in your about section of your channel, I translated it on Google translate from Spanish to English, and it says ‘Welcome to my channel, here you can find videos where I will tell you about my experience living with cerebral vascular disease and what I have done to recover, testimonies and information that will help you go through the process.

Carmen Murrieta 55:16
Yes.

Bill Gasiamis 55:17
Yeah, that’s really important.

Carmen Murrieta 55:21
Yes, because, well, I tried to give people what I didn’t have. That was I didn’t understand what was a stroke, and I guess, as I dare, I told you I was feeling lonely because I didn’t know more stroke survivors, and I saw this happen only, only to elder people, so I didn’t understand what, what was a stroke, and I think at that time, doctors also didn’t know what happened to me, I think ischemic strokes are harder to diagnosed, because, I don’t know, I don’t know why.

Bill Gasiamis 56:27
Because there’s so many causes, that’s, that’s one of the reasons. The thing about hemorrhagic stroke is the blood vessel has bled, it’s burst, it broke, so you can see very quickly what happened. Why did you have a hemorrhagic stroke, for some people, it happened because there was high blood pressure, so they can get to the bottom of the high blood pressure, they can work that out very quickly.

Bill Gasiamis 56:57
That’s the difference with hemorrhagic stroke. There’s sometimes there’s arteriovenous malformation, so it’s a vessel that hasn’t been formed properly. Also, there is a cavernous angioma, which is another vessel that isn’t formed correctly, or it’s it has changed over time and has become malformed. So there’s very clear evidence what caused a brain hemorrhage.

Bill Gasiamis 57:27
But sometimes with stroke like yours, it could be cryptogenic, there may not be any evidence what caused it. And after all, the tests, if they look at your heart and there is no hole in the heart, if they look at your genetics and there is no blood clotting disorder. And if they look at everything and they don’t find the reason, then, yeah, it can be a little bit difficult. I imagine you have to take some medication these days. Are you on blood thinners? Do they give you any medication to manage the condition.

Carmen Murrieta 58:04
Yes, during first years, I took blood thinners, but then now I don’t take any medicine. I just take care of myself, my diet and my mindset, and I do exercise, I try to have a healthy way of living.

Bill Gasiamis 58:35
Yeah, you really have to, you don’t have a choice, and it’s good to anyway, because you want to be you want to live long, and you want to live healthy for as long as you can, it’s really important. Tell me what was the hardest thing about stroke for you? Do you feel.

Carmen Murrieta 58:54
Physically, It was not a not, not being able to walk, and emotionally was losing my independence, because now I still, now, I can go some places alone, but at fears I couldn’t go alone any anywhere. So it’s difficult to ask people to find someone to help you every time you need something, I need something, I can go, for example, to grocery store. It’s really close to my house, and I can’t go, and, for example, stairs, sometimes they don’t have handrails.

Carmen Murrieta 1:00:13
So it’s really, it’s really difficult for me, and sometimes it has happened that I can’t go to the place I want, because stairs are difficult for me, and there’s no nobody to help me. So I can, I can’t go upstairs, and I think building are not prepared for people like us that we have reduced mobility. It’s very hard, and I hope to make architects or people in charge of that more aware of that, because we need those spaces.

Carmen Murrieta 1:01:20
For example, when I go to the to the zone of hospitals, you will think that they have an elevator or some facilities, or people like me or elder people also need it, and they don’t have facilities for that, and elevators don’t work, or stairs without hand rails, and it’s very difficult sometimes, you have to leave it to understand and to notice that, because people that doesn’t, that don’t need these facilities, don’t notice it, but I do.

Bill Gasiamis 1:02:19
Yeah, absolutely, when you haven’t had a condition that decreases your mobility, you’ve got no idea that mobility is an issue for a lot of people, and access to infrastructure, to buildings, to toilets, to all that stuff is really important, and yeah, it’s feel like it’s getting better, but it’s still not good enough, especially when you live in a city that is a lot older.

Bill Gasiamis 1:02:52
That perhaps the buildings have been there for many, many years already, hundreds of years, and they’re never going to upgrade them to modern buildings, and they just are the way they are, it makes it hard. What is? What is something that stroke has taught you?

Carmen Murrieta 1:03:12
Many things, for example, now I’m, I don’t give out easily, because I know things takes time, and when you do physical therapy, you know that you won’t walk in one day or two or three, it takes time. I also, now I have many friends, many new friends that have a stroke.

Carmen Murrieta 1:03:55
I also I never thought I could speak in front of many people, and I had to do it telling my stroke story, and that’s something I never thought I could do, and I also learned make videos for the internet, and I also hear speaking in English, but English, but at least I’m trying and many things, I change my mindset into a positive one. I take care of me, of my diet, many things.

Bill Gasiamis 1:04:46
Yeah, that’s fantastic, that’s fantastic because it’s difficult, stroke is difficult to handle, and there are some lessons that people can learn if hopefully they have the right focus. Sometimes, if we focus too much on the problems, we’re only going to ever see the problems, sometimes we have to stop focusing on the problems and focus on some of the things we can be grateful for.

Bill Gasiamis 1:05:17
But I also can understand that it can be difficult for people in the beginning of stroke to focus on the things that they are grateful for, because it does take away a lot. There’s some people that are listening now who are going through stroke recovery like you and me, and they may be early on in their stroke recovery. What do you want to tell them? What’s some piece of guidance or advice that you would like to give them?

Carmen Murrieta 1:05:48
I want to tell them that things get better. It takes time, but things get better, perhaps now you can move or you can talk, but everything gets better, and we always stroke survivors. Stroke survivors at first we think ‘why me?, and maybe the question is, what can I do now? That’s what I like to say.

Bill Gasiamis 1:06:42
That’s excellent. Carmen, thank you so much for reaching out and connecting with me. Thank you for the work that you’re doing in the Spanish speaking community, it’s really important, and I really appreciate your time. It was lovely to meet you.

Carmen Murrieta 1:06:59
Thank you Bill, it was nice to meet you too.

Bill Gasiamis 1:07:04
Well. That brings us to the end of another episode. I hope. Carmen’s journey of stroke recovery from facing unknown causes to creating a support system through her YouTube channel for Spanish speaking survivors, provided you with hope and valuable insight her courage to transform her struggles into a positive force for others is truly inspiring. Thank you to everyone who has left a review. It helps others find the show and gives much needed encouragement to stroke survivors.

Bill Gasiamis 1:07:35
If you haven’t already, please consider leaving a five star rating and sharing your thoughts on iTunes and Spotify. For those watching on YouTube, remember to like, comment and subscribe to stay updated to future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:07:59
Your support helps us continue bringing these important stories and maintaining the podcast’s production costs, every contribution, no matter the size, goes a long way in helping us reach stroke survivors who need encouragement. Lastly, if you have a product or service related to stroke recovery, or if you are a stroke survivor with a story to share. I’d love to hear from you. My interviews are unscripted and casual, so come as you are, visit recoveryafterstroke.com/contact, to get in touch. Thanks again for joining me today, and I can’t wait to see you in the next episode.

Intro 1:08:37
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:09:07
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 1:09:32
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Intro 1:09:32
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The post Carmen’s Journey of Physical Therapy After Stroke: Strength and Advocacy appeared first on Recovery After Stroke.

Discover harmful phrases stroke survivors often hear from medical professionals and learn how encouragement, not limitations, fosters true recovery.

Support The Recovery After Stroke Patreon Page
Bill’s Book: The Unexpected Way That A Stroke Became The Best Thing That Happened

Highlights:

01:27 Stroke Recovery Timelines
02:01 Never Say Never
02:40 You Look Great
03:06 Just A Little Stroke
03:38 What Are The Chances
04:11 Too Young For Stroke
04:36 This Is As Good As It Gets

Transcript:

Bill Gasiamis 0:01
Hello, everyone. Some time ago, I asked the stroke survivors who follow me on Instagram, what should a medical professional never say to a stroke survivor. And today, I wanted to share what they had to say. But before I get started, if you’re enjoying the podcast and want to support the work that we are doing. Consider joining the recovery after stroke Patreon page.

Bill Gasiamis 0:25
By becoming a Patreon, you’ll gain exclusive access to exclusive content and behind-the-scenes updates, all while helping us continue to bring inspiring stories and valuable resources to stroke survivors worldwide. Your support truly goes a long way in making a difference in the stroke recovery community.

Bill Gasiamis 0:46
Visit patreon.com/recoveryafterstroke for more details on how you can get involved. Now let’s dive into the topic. If you’ve ever been through the journey of stroke recovery or supported someone who has, you’ll know that one of the most difficult parts of the process is hearing limiting, or discouraging comments from medical professionals.

Bill Gasiamis 1:10
Stroke Survivors have shared their stories, revealing the harmful things medical professionals should never say during such a critical time. Today, I want to highlight some of those comments and explain why they should never be said to a stroke survivor.

Bill Gasiamis 1:27
One of the most frustrating phrases stroke survivors hear is about timelines. Medical professionals often say things like, you might not improve much after the first six months, which puts unnecessary pressure on the person recovering. Every stroke is different. To suggest that there’s a universal timeline for recovery is misleading and can diminish hope. Giving rigid recovery expectations can be damaging, especially when those expectations aren’t met within the given time frame.

Bill Gasiamis 2:01
Another damaging statement that came up repeatedly was that medical professionals kept telling survivors what they would never do again. You’ll never be able to do that again, or you’ll never walk again were common phrases reported by survivors, these kinds of comments can strip away hope and lead to giving up before they even try. The truth is, that many people defy these expectations. Stroke survivors shouldn’t be told what they can’t do. They should be encouraged to push their limits with support from those around them.

Bill Gasiamis 2:40
Another harmful comment that came up was the assumption that because somebody looks fine on the outside, they are fully recovered, “You look great” seems like a compliment, but for a stroke survivor dealing with invisible disabilities, it’s anything but. It’s important for medical professionals to understand that recovery isn’t just about appearances, it’s about what’s happening on the inside too.

Bill Gasiamis 3:06
Then there’s the issue of medical professionals undermining the severity of a stroke. It was just a little stroke. Is something many stroke survivors hear this trivializes the life-changing effects a stroke can have regardless of its size, stroke survivors face monumental challenges no matter how little their stroke might have been. These kinds of comments can leave survivors and their families feeling abandoned and hopeless at a time when they most need support.

Bill Gasiamis 3:38
Perhaps one of the most heartbreaking experiences came from a stroke survivor who was told that they had just a one to 2% chance of regaining function in their left arm and hand after a hemorrhagic stroke, yet they defied the odds and regained some function, even walking again. This highlights how important it is for medical professionals to avoid giving definitive outcomes based solely on statistics. Every stroke survivor is different, and every recovery is often unpredictable.

Bill Gasiamis 4:11
You’re too young to have a stroke. Is another common phrase. This statement dismisses the reality that strokes can happen at any age. It’s especially frustrating for young survivors, who are already dealing with the shock of having such a life-altering event at a time when society expects them to be in their prime. They need understanding and support, not disbelief.

Bill Gasiamis 4:36
One final damaging comment survivors mentioned was being told that they had plateaued or reached the limit in recovery. This is as good as it gets. It is something many hear, often within the first year of recovery. But recovery doesn’t stop after one year, two years, or even five years, stroke survivors continue to improve every day the five. Applying the limitations placed on them by well-meaning but misguided medical professionals.

Bill Gasiamis 5:06
In summary, what stroke survivors need most from medical professionals is support, encouragement, and belief in their potential for recovery, instead of hearing what they will never do again or being given arbitrary timelines, survivors need to be reminded that progress is possible and that recovery is unique to each individual. As many stroke survivors have proven, the only limits are the ones we place on ourselves, and with the right mindset and support, those limits can be shattered.

Bill Gasiamis 5:40
If you’re looking for more inspirational and practical advice on stroke recovery, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. In it, I share my story and the stories of nine other stroke survivors who discovered post-traumatic growth and found meaning in their recovery journeys.

Bill Gasiamis 5:58
This book will help you understand how to transform a challenging experience like stroke into an opportunity for growth, and it offers valuable insights for stroke survivors, their families, and healthcare professionals. You can find it at recoveryafterstroke.com/book, and I truly believe it will help you discover a deeper sense of purpose and meaning in your own recovery. Thanks for watching and remember your recovery is your journey. No one can define its limits, but you.

The post What Medical Professionals Should Never Say to Stroke Survivors appeared first on Recovery After Stroke.

Fred shares his story of surviving an ischemic stroke, heart attacks, and arthritis, focusing on resilience, recovery, and overcoming adversity.

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Website
Support The Recovery After Stroke Patreon Page

Highlights:

00:00 Introduction
01:39 Surviving Ischemic Stroke
02:13 The Cause Of Heart Attacks
06:45 Mental and Physical Coping with Health Challenges
09:39 Daily Life Adjustments After Surviving Ischemic Stroke
24:47 Managing Aphasia and Daily Activities
36:10 Medical Appointments and Health Monitoring
42:11 Reflecting on Life and Gratitude
56:35 Advice for Stroke Survivors

Transcript:

Bill Gasiamis 0:00
Welcome to episode 321, of the Recovery after stroke podcast. In this episode, I’m excited to introduce Fred Reader, a remarkable stroke survivor of not only an ischemic stroke, but also multiple heart attacks and long-standing battle with rheumatoid arthritis.

Bill Gasiamis 0:19
Fred’s journey of recovery is nothing short of inspiring, as he opens up about the challenges he faced from his stroke, including aphasia, fatigue and relearning to walk, and how he’s managed to rebuild his life despite the odds, Fred also shares his experiences with heart surgeries and living with a defibrillator, all while maintaining an optimistic outlook on life, his determination, resilience and practical approach to recovery will resonate with anyone who’s faced a health crisis.

Bill Gasiamis 0:51
This is an episode packed with hope, wisdom and insight for anyone navigating life after stroke. Just before we dive into Fred’s story, I’d like to take a moment to talk about how you can support the podcast. If you find these episodes helpful, inspiring or insightful, please consider supporting the show through Patreon, at patreon.com/recoveryafterstroke, Your support helps keep the podcast going and allows me to continue sharing powerful stories like Fred’s providing hope and practical advice to stroke survivors and their families.

Bill Gasiamis 1:28
Fred Reader, Welcome to the podcast.

Fred Reader 1:31
Thanks, Bill, good to be here.

Bill Gasiamis 1:34
Great to have you here. Tell me a little bit about what happened to you.

Fred Reader 1:39
On the eighth of January, 2020, I suffered a stroke. It was an ischemic stroke on the left-hand side, so I would suffer a little bit from aphasia. But prior to that, I’d had two heart attacks about five years before, and my mother had rheumatoid arthritis, and I got that almost 20 years ago. So had a little bit of an interesting time.

Bill Gasiamis 2:13
What was behind the heart attacks? Did you know how you came to be in that situation?

Fred Reader 2:20
My father’s father died at 48 from a heart attack. My father smoked heavily, drank pretty much like the drink, but yeah, so it was almost going to come to fruition just because of his lifestyle and the fact that his father had a heart problem.

Bill Gasiamis 2:47
Did you have a similar lifestyle smoking and that type of thing?

Fred Reader 2:51
Yeah, yeah. I smoked, I drank, enjoyed it. Enjoyed both of them, far too much, the truth be known.

Bill Gasiamis 3:00
It is a weird thing smoking. I know it’s not good for you, but I miss it, and I used to enjoy it as well, and I still enjoy the smell of other people smoking near me or around me. It’s some weird thing that happens.

Fred Reader 3:16
Yeah, so I understand that totally. I really enjoyed, enjoyed it, but yeah, these I gathered away probably six years before I had my heart attack, just because the rhematoid arthritis was starting and to to help alleviate the rheumatoid arthritis, they give you a thing called methotrexate, which is a drug which has bad effects on your liver. So I decided if I was going to be able to cope with the rheumatoid arthritis, the smoking had to go. So one of those things.

Bill Gasiamis 4:05
And then you had a heart attack six years after you gave up the smoking roughly, and then you had a second one. So what was the reason for the second heart attack?

Fred Reader 4:16
They didn’t find the first one. I had that. I might have felt-illish, whatever the second one I knew about. Second one, it was December, probably two days after my mother in law’s, you know, funeral, and I’ve had a heart attack, and it was pretty, pretty bad, because the right slow to my heart’s damaged the bottom end of its death, so it was a pretty major heart attack.

Bill Gasiamis 5:07
So how old were you when that happened?

Fred Reader 5:09
53.

Bill Gasiamis 5:11
Okay, and then a few years later, you have a stroke, an ischemic stroke. Now, how many years later, and how old were you then?

Fred Reader 5:22
I was 58 and it was in the January. I turned 59 in March. So it’s getting towards the end of the big behavior.

Bill Gasiamis 5:35
And what was the cause of the ischemic stroke? Do they know?

Fred Reader 5:39
No, the best they can work out is that my heart missed a beat, caused us, caused a clot, and it ended up in my brain, and that’s the best I can work out.

Bill Gasiamis 5:55
So you’ve been through a bit of a rough patch, like, how do you how do you mentally cope with all of that stuff that you’ve been through, especially when you got to the stroke right? Are you looking back and going, Why me? Are you looking back and going, I dodged another bullet. Like, how do you mentally work through all of the stuff that you’ve been through?

Fred Reader 6:21
Basically it’s I’ve missed the bullet again, and I’m alive, so you just move forward. Yeah, I’m not real worried about what could have happened if it happens, then you deal with it.

Bill Gasiamis 6:45
Yeah, that’s fair enough. That’s a good attitude when you had the heart attack. The second one, that major one, how did it impact your physical part of your life? So I know with stroke, you’ve got some deficits, we’ll talk about those in a minute, but how does a heart attack impact people in their daily lives?

Fred Reader 7:08
Well, one was pretty severe, so I went and had a quadruple bypass in the January. So they opened me up, did for the four of the veins in the arteries, and then I spent six months recuperating, and you basically got to start learning not to walk, but how to walk regularly again, things like that, so you start off with a you start off walking two minutes and five minutes and 10 minutes and 15-20 to get your body back to moving again.

Fred Reader 7:57
Plus I give you a lot of other different exercises. So it was quite an interesting part. And then in the May I went in and got a defibrillator put into my defibrillator put into my left side, and they run to join, to do leads, and they stick into my heart, so they can monitor my heart, so if anything goes wrong with it, I know, or they know.

Bill Gasiamis 8:36
Okay, so you’ve been through all of that stuff early on, and then you have the stroke at around 59 the stuff that you went through and you learnt with after the quadruple bypass, did that help you get through whatever you are facing after the stroke?

Fred Reader 8:58
I believe it did. I recently got, a few years ago, got asked by a friend of mine’s father, you know, what do I think of what what my parents bought home to my life, I turned around thought, about it, and I thought there was nothing wrong with what happened? Because I saw The Good, the Bad and the Ugly, about facing randomized and surviving it, so I had a pretty good idea of how to survive it before it actually happened to me.

Bill Gasiamis 9:39
Right, how to survive it mentally and emotionally, because the doctors did their bit. They get you home and all that type of stuff, and now you’ve got to deal with the aftermath. So is it that emotional and mental survival? What specifically do you mean about that?

Fred Reader 9:58
It’s the motion on the. Mental it’s I learnt from my father how to listen to the doctors and how to work out what what will be good for me and what may not be so good for me. So I learned to work out very quickly what they were telling me if it was good or bad and whether it will work for me.

Bill Gasiamis 10:24
So you were kind of in control of your own destiny, informed, and then with the information that you had felt like you could make a decent decision on how you wanted to go about things.

Fred Reader 10:37
Yes.

Bill Gasiamis 10:41
Yeah, and is that important? Does that give you a sense of control in your destiny? How? How is that important?

Intro 10:47
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover. What things should I avoid in case I make matters worse? Doctors will explain things, but obviously you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 11:17
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Fred Reader 11:50
I think it’s the I think least I know what what I should be doing, and it gives me the control that I need make sure I live the lifestyle that I want to live.

Bill Gasiamis 12:07
After the heart attack. The second one, that major one, did you? Were you working? Did you manage to get yourself back to work?

Fred Reader 12:15
I had basically about six months off, without pay, and then I went back to I actually went and got a forward job in Parramatta three days a week, just to see if I could do it. After the first week, I knew I was fine. Then, then my ex boss rang me up and said, Can you come do a couple of days for me? I said, Sure, I can do that. And three and a half years later, I finished up.

Bill Gasiamis 12:56
Okay, so did you go back in a full time capacity, or was it just part time.

Fred Reader 13:01
It was full time, basically. But like, if I needed time off, I just could do with it the way I needed to.

Bill Gasiamis 13:13
And then what happened three years later? How come you decided to give it up?

Fred Reader 13:17
I well, I was, you know, as a contractor, and the business and the organization has was having a lot of changes, and so, yeah, I look at it, and I got rid of all the contractors. So then I went and worked here. And there were just, yeah, month, couple of months, just doing contract work up until I had the stroke.

Bill Gasiamis 13:52
So you’re doing contract work up until you had the stroke. Okay, so then you’ve got the then, then you have a stroke, you end up in hospital, they discover there’s a clot. How long do you spend in hospital?

Fred Reader 14:08
I spent a week in North Shore Hospital. I was taken to West Benita originally, but I ended up in rural North Shore because they’re looking for a surgeon to remove the clot. So they took me when the surgeon was in West we moved. So my wife drove from Royal Shore Hospital, West moved and back to Royal Shore, where she worked.

Fred Reader 14:36
So I ended up in Royal Shore Hospital, and the first thing I knew about it was I woke up in this hospital bed with my wife and son, one of my daughters, her boyfriend, and myself, and like saying ‘Well, you had a stroke. Now, can you give us a 10 words that start with him.

Fred Reader 15:03
Our wife, because I tried to work out with my aphasia, so that was basically the first I knew about it. But from 8:30 onwards. I had no idea what went on during the day.

Bill Gasiamis 15:25
So what was it like experiencing the stroke? Were you aware that you were having a stroke? Was this something that happened? How did, how did it come about?

Fred Reader 15:35
I really don’t know. I came home, I took my car and get service I got home or put the kettle on to make cups in now, whether I actually made the tea or not, I have no idea. I remember I was on the couch and fell off the couch, and the son came down and said, Dad, you’re right. He’s running his mother, she told him to ring an ambulance. He rang the ambulance, and I was taken to Westmead Hospital.

Bill Gasiamis 16:13
Pretty instantaneously. So he’s heard the thud, ran down to inspect and see what happened, and then noticed you were on the ground acting weird.

Fred Reader 16:24
In Cal here, it was probably better description of it.

Bill Gasiamis 16:28
Yeah, right. And your wife, she’s a, Is she a nurse? What role does the hospital?

Fred Reader 16:34
She’s a retired pathology tech, so she worked in the hospital, in a lab, which does all sorts of things are coming up eithers, basically.

Bill Gasiamis 16:48
Okay, so she’s fairly aware of what unwell people look like, or what might be going wrong. She would have come across people who’ve had strokes before, but she knew enough over the phone, simply by what your son said, that you guys weren’t going to work it out between the two of you.

Fred Reader 17:10
No, so immediately rung the ambulance, and they were already within 20 minutes.

Bill Gasiamis 17:19
And then when you’ve come home, what are you dealing with, well? Or did you come home? Did you end up in therapy first?

Fred Reader 17:25
I ended up in Royal White Hospital for about two weeks, and they started therapy. Get learn how to, I had a lot of speech therapy with them, and physical therapy, which I actually probably enjoyed more than most people, which I did enjoy.

Bill Gasiamis 17:58
Why did you enjoy it though that’s the interesting part.

Fred Reader 18:02
I think, because I always played sport, I always trained, even though I smoked like a chicken. But, yeah, I always enjoyed the training part of it, so that so I was just kept telling myself, I’m just going to train and goodbye.

Bill Gasiamis 18:21
Right? So it’s all about really, you felt like it was a bit of a, not a competition, but a challenge that you needed to go after.

Fred Reader 18:33
Yes, yeah, basically.

Bill Gasiamis 18:39
Was it frustrating not being able to talk.

Fred Reader 18:43
Yes, it was, I like a chat. And, yeah, I found it very difficult. You know, I think within the Sunday after I had, this was a Wednesday when I had an Australia, the Sunday friends of ours came, and I spent the whole time being absolutely scared shitless that if I opened my mouth, I had nothing to say and just look like a minute. And that that that was one of the big problems I suffered with my stroke, not being able to communicate quickly and smartly, so that was a real challenge for them.

Bill Gasiamis 19:29
So you had a pretty quick tongue before that, and now you’re in a situation where the words aren’t coming the aphasia. So what happens with the Aphasia for you? What’s it like? Is it that you can’t think of the word, or you can’t get it out.

Fred Reader 19:44
It’s a combination of both. It’s combination of both. Sometimes I can’t think of the word, and then I’ve gotta quickly find a new word. Or sometimes I just have that it’s like a starter type of thing, because I know. What I’m trying to say, I’m probably trying to get it done quickly, so don’t forget it.

Bill Gasiamis 20:05
Okay, so it’s catch 22 or in one instance, you might be not being able to remember the word. And then when you remember it, you just want to spit it out. And then by the time you spit it out, you’re afraid that you might forget it if it doesn’t come out quick enough.

Fred Reader 20:20
Yeah, basically, that’s it, yeah. So it’s a real good, real good pandemic at the moment.

Bill Gasiamis 20:27
Yeah, right. It seems like you’re fairly good though. I mean, as far as your presentation here, it seems like you’ve come quite a long way when you compare yourself to what you were like at the beginning. Did you see a massive difference?

Fred Reader 20:45
Yes, I do. My wife does, there are times when I frustrated because especially as the the fatigue kicks in mid afternoon sometimes, and I probably know they have a bit of a rest, and I’m not doing whatever reason. I do actually get her, she gets a bit come on, get it said quickly. Let’s go on with get on with it. So it can be still frustrating.

Bill Gasiamis 21:18
Yeah, so in the evening, you find yourself sort of running out of battery, and then the delay between the word and the speech increasing.

Fred Reader 21:32
That’s basically, yes.

Bill Gasiamis 21:36
Yeah, do you find that you’re good in the mornings?

Fred Reader 21:41
Yeah, I’m pretty, really good in the mornings. And as as they get goes on, it can get worse. But I’ve got been out at night with friends and found it, you know, have a rest during the day, and I’ve, you know, been good up until say 11:00 – 11:30, and then I’m ready to go home and rest up.

Bill Gasiamis 22:09
So during the day, if you get a recharge in, then you can go for a little bit longer, and you can be your your speech can flow a little easier.

Fred Reader 22:19
Yes, yes, so I try to have a break. You know, snooze in the afternoons, that’s not all, all times when I remember.

Bill Gasiamis 22:32
Yeah, fair enough. I mean, it’s probably when you feel most need, I would imagine, right?

Fred Reader 22:39
Yes, yes, that’s right, yes.

Bill Gasiamis 22:43
How long does a recharge need to take? Is it an hour? Is it less?

Fred Reader 22:48
Sometimes it can be 20 minutes, if it’s good, sometimes it can be an hour. It just depends on the day, the time, the place, yeah, when, whether I’m wanting to do something more.

Bill Gasiamis 23:06
So depending on the agenda, whatever you’ve got going for the day. So if there’s something coming up, it’s probably a good idea to get that rest in early on so that you can actually get to that particular event and not miss out.

Fred Reader 23:19
That’s usually the way I work it, yes.

Bill Gasiamis 23:27
So what’s it like now that you’re at home after the stroke? I imagine that you haven’t returned back to work? Is that something that’s not happening now.

Fred Reader 23:38
I retire basically the day of the stroke, one of my daughters grabbed my phone and went through and it’s going through every name that she knew and every name she didn’t. She’d ask me, who’s this person? And I’m going, then, what are you looking for? He said, Your finance bloke. Turned around said, Yeah, I know who he is.

Fred Reader 24:06
She said, Well, tell me who he is, so grab the phone, gave her the number. She rang him, and she turned around said, well, got him called to him, and he said, Well, you’ve got enough money to retire, so yeah, why? Why? Wouldn’t bother going back for work? But basically, it just made sense for me to retire.

Bill Gasiamis 24:34
What kind of work were you doing?

Fred Reader 24:36
I was an accountant. So basically sitting in an office and work, work, work on a computer.

Fred Reader 24:45
Dealing with numbers all day, how is dealing with numbers these days? And what is that like for you?

Fred Reader 24:47
I try not to deal too much with numbers these days. Yeah, my wife pays all the bills just because it’s easier.

Bill Gasiamis 25:09
So the impact of the stroke has definitely sort of messed up with that, that part of the your your skills, it was it a does it feel like the skill is still there, or have you lost the brain energy that’s needed to focus on numbers for a period of time?

Fred Reader 25:34
I can, I can do numbers, but like, half an hour to 40 minutes, I started tire from it. I was doing some I was treasurer of a couple of small organizations, which I gave away just because I didn’t really want to, need to, you know, do it two three hours every other day to keep these things running. So I decided it was time to retire from them and find some let somebody else have the joy.

Bill Gasiamis 26:11
The joy?

Fred Reader 26:15
Or the problems.

Bill Gasiamis 26:16
Yeah right, or the problems, yeah, okay. So I understand what you mean about that fatigue and the tiring, it was definitely like that for me. You know, looking at a computer screen after brain surgery and trying to recover from that was such a challenge. I mean, it was such a brain drain, and then I never felt confident that I was doing anything that was I never felt that I was it was accurate.

Bill Gasiamis 26:47
You know, there was mistakes that I wasn’t aware of, that I was happening. People would have to go over it and double check everything, and it was really frustrating and annoying. But I’m not in the position to retire, and, you know, I had to kind of persevere and push on, and it’s improved over time. I know that you don’t do that now for a living, and you’re not a treasure anymore, but have you also seen an improvement in your ability to concentrate on things like that for a little bit longer than you initially were able to.

Fred Reader 27:23
Yes, yeah, I can up. I still read a lot, but like I read in 20 minutes, 20 minutes sessions I do, 20 minutes in the morning, 20 minutes in the afternoon, 20 minutes before I go to bed. Just so I think my ability to read going I find that I always enjoyed reading, and I used to read three books a month. These days, I’m lucky to do a book and a half.

Bill Gasiamis 28:01
Right? Okay, so you still managed to find a way to squeeze in an hour, but you just break it up over the course of the day instead of doing all at one block.

Fred Reader 28:10
Yeah, that’s basically it.

Bill Gasiamis 28:13
So if you’re getting through three or four books a month previously, you’re doing several hours a day of reading.

Fred Reader 28:21
Oh, yeah, yeah. Like, I used to, like, I I’d start 10:30 and read until Yeah, one, yeah, 12:30 and then go to bed.

Bill Gasiamis 28:36
Right? That’s such a session of reading. You’re talking about 10:30 in the morning?

Fred Reader 28:41
In the evening.

Bill Gasiamis 28:43
I Was going to say, okay, so you do a couple of hours of reading solid previously.

Fred Reader 28:53
My father used to do that. And I think I that’s where I got the I got the want to do it.

Bill Gasiamis 29:02
And with aphasia. Now, because I know anything about aphasia, really, does that impact your reading as well? Is it, or is that not an issue with aphasia.

Fred Reader 29:15
I find it a lot harder to read constantly these days, partly, partly seen fatigue, but the Aphasia I found more in the writing, writing reports and things like that. I’m glad I don’t have to worry about these dances. There’s all there’s a lot of reports that sometimes you have to write in accounting, and that’s the part that I really would struggle with. Days writing emails. Sometimes I think to myself, Do I really have to do this? And I know I have so. And you do it, but it takes a lot longer to write them now than it used to.

Bill Gasiamis 30:07
So not only is the speech getting the words out of your mouth, like with your tongue, a problem, is it also an issue when you’re putting the words on the paper or on the keyboard? Is it that the words, again, aren’t coming to you, or when they are coming to you, they’re difficult to extract and place on the keyboard?

Fred Reader 30:32
Yeah, it’s that. It’s that whole, it’s the whole thing. Yeah, it it’s finding the word, it’s writing the word, it’s speaking the Word. So yeah, that’s and that sometimes does frustrate. I was trying to write something which I finally just about finished. I’ll go and have another look at it later today for for a piece I’m going to put out on my website about aphasia, and that’s taken called, lot of work to actually do. I’ve actually then I’ll send it to a friend of mine who usually reads these things form, and just to make sure I have that in facility.

Bill Gasiamis 31:14
Let’s take a quick pause here, but we’ll be right back with Fred’s story shortly before we continue, I want to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. It’s not just a memoir, it’s a guide on how to achieve post traumatic growth after stroke.

Bill Gasiamis 31:32
In this book, I share not only my own story, but those of other stroke survivors who turned their trauma into an opportunity for growth. If you’re seeking hope, resilience and practical steps to improve your life after stroke, this book is for you. You can find it on Amazon by searching for my name, Bill Gasiamis, or by heading over to recoveryafterstroke.com/book.

Bill Gasiamis 31:57
Right? Just to check over it, just just to edit it.

Fred Reader 32:00
Yeah, that’s it.

Bill Gasiamis 32:02
Wow, It really gives you a real kind of what you’re described, a deeper understanding of what people experienced with aphasia and how challenging it is, and then there’s the other side of it, is that people who don’t understand what you’re going through, they probably also get frustrated, or think, why is this guy not finishing his sentences?

Bill Gasiamis 32:29
Do you have that experience as well where people kind of look at you and misunderstand not only what you’re saying, but why you’re speaking the way that you’re speaking.

Fred Reader 32:42
Yeah, normally, if I’m reading people, I tell them I’ve got aphasia. I used to be very worried about that from long time. And then I realized, if you actually explained to people what aphasia is and why you have trouble speaking with them, they tend to understand, or least give you a little bit of leeway with them. So it was very difficult in the start to explain to people that I have aphasia and give them a quick, brief, quick, brief talk about it, because I don’t want to bore them. So yeah, basically, I just tell them that aphasia affects your ability to speak and communicate in general.

Bill Gasiamis 33:33
Yeah, and they give you a little bit of grace. So it seems like you’re coming along quite well, you’ve previously said that you were physical, quite physical. You didn’t mind a little bit of physical activity, that type of thing. Where are you now? With physical activity, what do you are you able to do?

Fred Reader 33:55
I walk a lot. Walk up 6k most days. Except occasionally my right knee blows up, and I slow that down, and what I do is I do one day walk. The next day I do exercises from the knees, and then the following day I walk again, so I’m basically just about to start that up again. My right knee’s blowing up a bit at the moment.

Bill Gasiamis 34:29
Are they just all sports injuries?

Fred Reader 34:33
It’s that and rheumatoid arthritis, a bit of osteoarthritis in my right knee, so it’s the combination of the two of them are pretty, pretty severe sometimes

Bill Gasiamis 34:46
I hear you Okay, so they get swollen and inflamed. Yes, okay, alright, understand. So exercise, though, is really important when you have rheumatoid arthritis, if I understand correctly, it’s encouraged, isn’t it very much? And do you find that that creates a lot of pain, and therefore, do you have to medicate that pain?

Fred Reader 35:15
I try not to use anything other than the drugs that I’m on or the rheumatoid arthritis, no heart problems and stroke. I don’t tend to use any other medication. If I can avoid it occasionally, I’ll get a couple of Panadol Osteo or something like that, just to remove the pain if it’s really bad, but I try to work way through it.

Bill Gasiamis 35:49
Okay? And it does, it, does the pain? Did the pain improve? Decrease? Get worse? Did it change after the stroke? Did you notice a difference in the way that you experienced the pain? Or has it kind of remained as it was?

Fred Reader 36:10
It’s It’s remained pretty constant, because I was very lucky with my arthritis, that medication had actually stopped it a lot, or made it go into like, reduced a lot. I don’t get a lot of pain these days, and I hope to continue on with that, but it’s all on the luck of the gods, I’ll go back to see my rheumatologist on Wednesday. They have a look at my knee, so wait and see.

Bill Gasiamis 36:42
So you’re dealing with the aftermath of the heart, rheumatologists, because of the arthritis, and neurologists, I imagine, or doctors regarding your brain. What’s your your calendar look like as far as doctor’s appointments go?

Fred Reader 36:59
Sometimes it’s just nothing. Yeah, there’s a few. I’m coming up to the 10 year of my defibrillator, and the battery’s about to run out. So I’ll see one of my cardiologists every three months, at the moment, just to work out when he’s going to take me in and put the new battery in. But other than that, I see the rheumatologist three times a year, the cardiologist most of the time, once a year, and when I need the neurologist, I see them.

Bill Gasiamis 37:42
Okay? So it’s not too overwhelming. There’s not too much to.

Fred Reader 37:46
Not at the moment, but there was times it felt like every other day I was younger, doctor’s appointment.

Bill Gasiamis 37:54
So with regards to the battery that you’re talking about, where does that particular defibrillator sit is it also known as a pacemaker?

Fred Reader 38:03
No. Pacemaker is different. It’s basically just about there.

Bill Gasiamis 38:10
Just beneath the shoulder kind of.

Fred Reader 38:12
Yes, just below the shoulder, just underneath the shoulder.

Bill Gasiamis 38:19
And how big would you say it is? Can you feel it?

Fred Reader 38:22
Oh, yeah, yeah, it’s about that big.

Bill Gasiamis 38:25
Okay, so a couple of inches?

Fred Reader 38:27
Yep, and it’s, yeah, they, they kept me open, and I was awake the whole time, and you had this bloke there, cutting away, putting it in, checking it out, really quite interesting.

Bill Gasiamis 38:47
Was he chatting about anything, or was he just focused on his job?

Fred Reader 38:51
I was talking with the anesthetist most of the time, at the occasion, he said, could you simply quite I’ve got to get this bit right. Yeah, so I got to know my cardiologist very well over the years.

Bill Gasiamis 39:09
So you’ve got this thing, and now you’re probably going to go in similar procedure. You’ll be awake, they’ll take it out, replace the battery, and then pop it back in, and is it just a little incision that they make.

Fred Reader 39:21
Yeah, it’s two inches wide, two inches long, maybe three.

Bill Gasiamis 39:28
And then you’re off home, or you’re recovering at hospital.

Fred Reader 39:33
The first one, I spent a night in the hospital as I had no idea what it’s going to be like this time. I presume we’ll probably be a night.

Bill Gasiamis 39:43
Yeah, that’s pretty cool Fred, I mean, I everything that the medical people do these days is really cool. Like, don’t get me wrong, everything but the free. A defibrillator as well in that chest that’s that small, that’s two inches or so big, just is unbelievable, when you think about where technology is and how far it’s come, and how that thing operates, and then they can just pop up, pop it in and take it out and change a battery and keep you going. Do you ever think about all of that stuff and just get blown away? How do you deal with all of that?

Fred Reader 40:34
Absolutely, when they told me I was going to have one, I thought what I understood the reason why, because my heart doesn’t beat well, and it’s important for me to understand that something goes wrong, this will pick it up, and every night, there’s a box in my next to my bed, which actually transfers it from from a defibrillator to a computer in North Ryde.

Bill Gasiamis 41:15
So it goes from your house, it downloads and sends that information to the medical team in the hospital in North Ryde.

Fred Reader 41:22
No, it’s a company, and they’ll what the they let the doctor know if there’s a problem.

Bill Gasiamis 41:36
Okay, so the private company has that system set up, downloads data, and then they report on anything strange or abnormal or something that they need to know about so that they can act when it’s happening.

Fred Reader 41:51
Yes, basically yes. That’s quite an quote and yeah, and a pacemaker, all that does just my father had one of them before he passed away.

Bill Gasiamis 42:04
This is far better than a pacemaker.

Fred Reader 42:08
Well, yeah, hopefully.

Bill Gasiamis 42:11
Yeah, sounds like it. Are you aware of it? Does it sort of slip out of your mind sometimes? Or are you always aware that it’s sitting there and doing its thing?

Fred Reader 42:20
I think most of the time, I don’t, I forget it’s there until I have a shower and I doubt, oh, what’s that overlap? Oh, yeah, that’s still there, yeah, it’s that type of thing. You know, it’s there, but, and it’s doing whatever it’s doing, and it doesn’t you you notice it, if I’ve gotten no shirt on not doing that now, but yeah, that’s about the only time you notice it.

Bill Gasiamis 42:53
Right, so does it give you information, any information at home that you need to know of does it beep or make any noises? Or did you notice anything? I imagine with the pacemaker, people would notice that it’s kicked in and shocked the heart, right? So is this also doing that job, or is it just doing that?

Fred Reader 43:16
Let you know if there is a problem, had a couple beeps go off and and just on the hospital down, that was just something gone, going a little higher wire. But they reckon if it needs to kick in, you’ll know, know about it, because it’s like, been hit, hidden your chest by a bloke about 20 stone. That’s quite a large bud, and it makes a large beat, so you really do know what’s there.

Bill Gasiamis 43:52
That it’s been activated as well, you’re 100% aware of it.

Fred Reader 43:55
Yes, yes.

Bill Gasiamis 43:59
Is this thing that you’ve gone through with your heart is that, so if you if you could kind of put them in order of, kind of, what’s the hardest thing to deal with or the most challenging, what order would you put these things in? Because you’ve got rheumatoid arthritis, you’ve got stroke, you’ve got heart attack. Like, is there an order? Like, am I even making sense?

Fred Reader 44:25
Like, I always think that the strokes probably the bigger one because of the effect the mind, it stopped me from working full time, and it made my life very interesting, say my least.

Bill Gasiamis 44:47
Is that code for harder or more difficult? What is very, very interesting code for.

Fred Reader 44:53
Probably, probably, yes, it is harder, but I. I I still find great enjoyment from the fact that I’m still alive. Yeah, my fellows have a child, so I’m still around to see that. You know something, yeah, my grandfather didn’t do. So those type of things I’m very, I feel very grateful for that are still around to be involved.

Bill Gasiamis 45:26
Yeah, how? How heavy of a smoker were you?

Fred Reader 45:34
Well, minimum 40 a day.

Bill Gasiamis 45:38
Yeah, that’s heavy. Was it easy to quit? Did you go through withdrawals, or any of those types of challenges?

Fred Reader 45:48
No, I basically bought some of that gum stuck baby. After about two weeks, I was pretty much fine, but I knew I had to give it up. And something my father said to me, being able to give it up before you have to give it up is a lot easier than you’ve gotta give it up.

Bill Gasiamis 46:15
Yeah, so you were ready to give it up, you’d made the decision, and you reckon a couple of weeks of chewing gum was enough. It just kind of so it was more about the, was it more about the nicotine or the chemical addiction, rather than the, you know, for me, it was also that, but more importantly, it was kind of the, where do I put my hand for the rest of the day, you know kind of thing.

Fred Reader 46:39
That was a that was a problem for a while. I must admit that too, because, yeah, Once upon time I was really doing this, yeah. And, I mean, yeah, there were times when I finished one cigarette and what the next one type of thing. Yeah, it happened, but yeah, it was one of those things, I enjoyed it a lot. Still miss it yeah.

Bill Gasiamis 47:05
And now with your walking, do you find yourself extremely exhausted at the end of that walk? What’s the routine after the walk? Because I remember when I was first sort of getting physical again and learning how to walk again, and maybe I wasn’t doing six kilometers at the beginning, but I used to go to the gym and do some light sessions, and then I’d be like wasted for the entire day. How do you recover after you’ve done your your six kilometers?

Fred Reader 47:39
Pretty good, because I’ve been doing it for a long time. I basically I because of the room to an arthritis I stopped running, but I started walking, and I try to walk 6k in 72 minutes. So I’m trying to do it like I raced with myself, just to keep it interesting, like, but when I, when I first had my heart attack, I’d do 2k and I’d be buggered for the hours. But as I continue to work at it, I become a lot better.

Fred Reader 48:24
I can come home, sit down, do whatever I need to do, and then move on again. Yeah, and I like to get that done somewhere. Yeah, 7:30 in the morning. It’s the latest I want to start the walk. Now I like to get it done early. A, it’s still foolish, and B, it works in with my lifestyle.

Bill Gasiamis 48:54
Yeah, right. So is it easier to do in summer or in winter? Does the weather affect you?

Fred Reader 49:02
I’d much rather it in the winter than the summer. The summer, it’s very hot, and I end up pretty much needing a shower by the time I get back.

Bill Gasiamis 49:13
You end up cooking. Do you live near the seaside?

Fred Reader 49:19
Now I’m about 25k-35k from the seaside, but I live by a river.

Bill Gasiamis 49:30
Okay. Yeah, I understand what you mean about the weather. Now, for me, I much prefer, as well, being out of the sun as much as I can during the afternoon, and that’s the kind of time where you hear everyone sort of say, you know, between 11:00 and 3:00, keep on the retreat. We had that song that we used to get sung to us about being sun safe. You know about over exposing ourselves our skin to UV rays, right for skin cancer risk.

Bill Gasiamis 50:14
But I find, like in summer, if I’m out and about, and it’s kind of those mid day hours afternoon, it’s really difficult to deal with the intensity of the sun, especially on a hot day, and I’d be inclined to just sit under the shade for three or four hours in the one spot, and not move and do anything, just so that I could avoid being exposed like that. And it makes going to the beach kind of interesting, because you see all these people sunbathing and being completely, totally exposed.

Bill Gasiamis 50:51
If I haven’t got a beach umbrella, I won’t go to the sun. You know, to the beach in summer at all. There’s no point being there because it’s not enjoyable, and I actually can’t cope with being that hot and over exposing myself. And that’s got worse after the stroke for me.

Fred Reader 51:14
Yeah, I find the same and also just some of the drugs that I’m on, getting sunburned is not a good idea, so I tend to stay away from the sun. Yeah, and I still love the beach. Yeah. And my daughter, Bill’s daughter bought a place in Port Macquarie, which is a beach house place, beautiful, and we end their 15 minute walk from the beach.

Bill Gasiamis 51:49
So what are your meds? Why do your meds make getting sunburnt worse? Not that it’s not bad enough. You’re already getting sunburnt. But why is it even worse with those meds?

Fred Reader 51:58
It’s got to do with something that my first rheumatologist just told ‘Don’t get into the sun’. It’s got to do with the methotrexate. It’s just one of those byproducts of it, cos it was an old cancer drug in the 50’s, which I found helped people with rheumatoid arthritis. Now, it’s one of those things they get, they tell you, I’m not going to and it doesn’t greatly borrow me these days.

Bill Gasiamis 52:32
Yeah. What’s very interesting, I’ve never heard of it before, but that is interesting. So with regards to your stroke, like, what’s the hardest thing about stroke for you?

Fred Reader 52:42
I think it was the fact that I didn’t know what had happened, and it was a major thing that happened, and I didn’t actually really know what happened. And the aphasia, and the fatigue. Yes, I understood fatigue from before, because the arthritis and the heart problems gives you fatigue, but the neurofatigue is a lot worse.

Bill Gasiamis 53:19
Yeah. What has stroke taught you?

Fred Reader 53:23
Well, be grateful that you’re still alive, you know, and that I can still enjoy my life. Yeah, one of my daughters got married after we had this stroke and the first one got married just before I had the stroke, so yeah, and I’m still able to go out, be with friends, enjoy my life, although occasionally have trouble talking to people.

Bill Gasiamis 54:00
Did you not okay? This is going to sound weird, I know you’re grateful, right? But with your heart attack, did you not have that? I’m grateful to be alive moment. Or what was that like? Was that a similar experience?

Fred Reader 54:15
I think, remember actually talking to a friend of mine said, What do you think I turn around? Said ‘To be perfectly honest with us, quite grateful that it happened now I can get on with the rest of my life’, because I always had this great fear that I could die, die because I smoke like a chimney, and you know, if it happened earlier, probably could have, and it was something my father, when my father was had his his heart attack.

Fred Reader 54:51
His cardiologist turned around and said, for a bloke who smoked more than 60 a day, which is probably the better when I can work out for you, and you’ve suffered a heart attack and still alive, I’d go and buy yourself a lottery ticket, and that that basically was that stuck with me for a long, long time, didn’t make me stop smoking.

Bill Gasiamis 55:18
But you had even like you still had that monkey on your back. You still thought that this is probably going to happen to me, and then you were relieved that it was out of the way?

Fred Reader 55:29
Yeah, yeah, because my family was smoked heavily, and three, my father had four, and three other siblings, two of them had heart attacks, and they all had it at 54.

Bill Gasiamis 55:55
Okay, so this might sound weird, right? Didn’t you think that maybe it’s a good idea to stop that lifestyle way before any of the trouble, so that you don’t have what happened to the others? I know you probably think that that’s the right way to go now, but back then, it never occurred to you that I could change my lifestyle do something different?

Fred Reader 56:23
No, yeah. No. Like, look, I started smoking at 14. I was going to do it to the day I died. Thankfully I didn’t.

Bill Gasiamis 56:35
Yeah, again, now, with regards to stroke, there’s people listening to the podcast. They’ve been around for a while, perhaps they just started their recovery. What do you want to tell somebody about stroke recovery? What wisdom would you like to impart on them?

Fred Reader 56:56
Listen to what the doctors tell you. Work out, what will work for you, and remember, you’re the only person who can make your recovery what it is, so you’ve actually got to do all the work.

Bill Gasiamis 57:13
Thanks so much for that, Fred. On that note, I really appreciate you joining me on the podcast.

Fred Reader 57:18
Thank you, Bill. It’s been wonderful.

Bill Gasiamis 57:20
Well, that brings us to the end of another episode. I hope. Fred’s incredible journey of surviving an ischemic stroke, heart attacks and managing rheumatoid arthritis provided you with hope and valuable insight. His strength in the face of multiple health challenges and his determination to live a full life despite aphasia and other deficits is truly inspiring. Thank you to everyone who has already left a review. It helps others find the show and provides much needed encouragement to stroke survivors.

Bill Gasiamis 57:52
If you haven’t already, please consider leaving a five-star rating and sharing your thoughts on iTunes and Spotify and for those watching on YouTube, remember to like, comment and subscribe to the show to stay updated on future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.

Bill Gasiamis 58:18
Every contribution helps bring stories like Fred’s to more people who need encouragement and advice on their stroke recovery journey. And if you know a stroke survivor or you are one yourself and you have a story to share, I’d love to hear from you. My interviews are relaxed and unscripted, just come as you are. Lastly, if you have a product or a service related to stroke recovery, consider sponsoring an episode. Visit recoveryafterstroke.com/contact to get in touch. Thanks again for joining me today, and I look forward to seeing you on the next episode.

Intro 58:53
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 59:23
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 59:48
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 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 1:00:15
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.

The post Surviving Ischemic Stroke, Heart Attacks, and Arthritis: Fred’s Story of Resilience and Recovery appeared first on Recovery After Stroke.

Hey everyone, Bill Gasiamis here. If you’re navigating stroke recovery, you’re likely searching for guidance and support. That’s why today, I want to share 10 things stroke survivors should know after they have had a stroke. These insights, gathered from survivors who have walked this path, will provide valuable information to help you or a loved one in recovery. Let’s dive in.

One of the most important things stroke survivors should know after they have had a stroke is that emotional recovery is just as crucial as physical healing. Many survivors aren’t prepared for the grief that comes with losing their pre-stroke self. It’s common to feel a sense of loss for the abilities and lifestyle you once had. Understanding that this grief is a normal part of the recovery journey can make it easier to accept and process these feelings.

Another critical point in the list of things stroke survivors should know after they have had a stroke is that fatigue is a common and expected part of recovery. Many people aren’t told about the extreme tiredness they might experience, which leads to frustration when they push themselves too hard, too fast. Resting doesn’t mean you’re weak—it’s an important part of rebuilding strength and healing after a stroke.

One of the 10 things stroke survivors should know after they have had a stroke is that a stroke can significantly impact your personality and mental state. PTSD, anxiety, and depression are common, and these mental health changes can be just as challenging as physical limitations. It’s crucial to seek help early for these issues and understand that personality changes after a stroke are normal, even if they are unexpected.

Among the 10 things stroke survivors should know after they have had a stroke, finding a supportive community stands out as one of the most valuable. Connecting with others who understand your experiences can provide emotional validation and motivation. Whether it’s an online support group or in-person meetings, surrounding yourself with people who “get it” can be transformative during your recovery.

Another important aspect of the 10 things stroke survivors should know after they have had a stroke is that recovery doesn’t have a fixed endpoint. It’s a journey that continues long after you leave the hospital. Progress may be slow at times, but it is ongoing. Survivors often find that even years after their stroke, they’re still making improvements, sometimes in small but meaningful ways.

A key point on the list of things stroke survivors should know after they have had a stroke is that recovery is about retraining the brain, not just building muscle strength. Many survivors wished they had understood this sooner. Techniques like biofeedback, neuroplasticity exercises, and electrostimulation focus on helping the brain reconnect with your body, rather than just strengthening muscles.

If there’s one message to take away from these 10 things stroke survivors should know after they have had a stroke, it’s the importance of patience and self-acceptance. Recovery takes time, and it’s crucial to accept that you may not return to exactly who you were before the stroke. However, that doesn’t mean you won’t improve. Embrace the new version of yourself and focus on what you can achieve moving forward.

One of the more practical items on the list of things stroke survivors should know after they have had a stroke is the impact of diet and lifestyle changes. Proper nutrition, hydration, and a healthy lifestyle can significantly aid your recovery. However, many survivors shared that they didn’t receive much guidance in this area early on. Taking the initiative to improve your diet and overall health can make a big difference in your long-term recovery.

While finding a stroke survivor community is important, another of the 10 things stroke survivors should know after they have had a stroke is that emotional support from friends and family is equally crucial. Unfortunately, some survivors experience distancing from loved ones, which can feel isolating. Focus on those who stick by you and seek emotional support through counseling or therapy if needed.

Lastly, one of the most encouraging things stroke survivors should know after they have had a stroke is that recovery is possible, even when it feels painfully slow. Many survivors wish they had known just how much improvement could happen, even years after their stroke. Don’t be discouraged by setbacks or slow progress—keep pushing forward, and celebrate every small victory.

Conclusion: The 10 Things Stroke Survivors Should Know After They Have Had a Stroke

I hope these 10 things stroke survivors should know after they have had a stroke provide some valuable insights and encouragement for your journey. Stroke recovery is challenging, but with patience, support, and the right mindset, progress is possible. Remember, you’re not alone, and every step you take is a step forward.

Thank you for reading. If this post has helped you, feel free to share it with others who might benefit. Let’s keep supporting each other through recovery.

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The post 10 Things Stroke Survivors Should Know After They Have Had a Stroke appeared first on Recovery After Stroke.

Perispinal Etanercept: A Breakthrough in Stroke Recovery?

Stroke recovery is often a long and arduous journey, particularly for individuals suffering from chronic post-stroke symptoms. In recent years, etanercept, an anti-inflammatory biologic typically used for rheumatoid arthritis, has gained attention for its potential in treating neurological deficits related to stroke when administered via the perispinal route. This novel treatment approach is led by Dr. Edward Tobinick and has shown remarkable outcomes in post-stroke recovery, even in patients whose stroke occurred years earlier.

Etanercept is a TNF-alpha inhibitor, which blocks a protein called tumor necrosis factor (TNF). TNF is known to contribute to inflammation and has been linked to many chronic conditions. In stroke survivors, the brain’s prolonged inflammatory response can prevent full neurological recovery, leading to lingering symptoms such as chronic pain, mobility issues, cognitive dysfunction, and aphasia.

Perispinal administration of etanercept is unique because it bypasses the blood-brain barrier. Typically, large molecules like etanercept can’t easily cross this barrier, but perispinal delivery—combined with head-down positioning for a short period after the injection—enhances the drug’s access to the cerebrospinal fluid, allowing it to reach areas of the brain affected by the stroke.

The procedure begins with a small dose of etanercept (25 mg) injected near the spine. Afterward, the patient lies in the Trendelenburg position (head below feet) for a few minutes. This positioning allows the drug to move through the cerebrospinal fluid and reach the brain more effectively. Once there, etanercept works to neutralize TNF-alpha, reducing inflammation and calming overactive neural pathways that may be responsible for ongoing stroke symptoms.

Studies and anecdotal reports from patients who have undergone this procedure show that improvements can happen rapidly, sometimes within minutes. Patients have reported significant gains in motor function, cognitive clarity, and pain reduction. In some cases, survivors who struggled with basic tasks regained abilities such as walking unaided or speaking more fluently.

These clinical outcomes have been particularly notable in the treatment of central post-stroke pain (CPSP), a notoriously difficult condition to manage. The most recent randomized controlled trials have validated that perispinal etanercept can offer relief to patients suffering from CPSP and other chronic deficits​(Drugs.com)​(Stroke America).

Despite the promising results, the use of etanercept for stroke recovery is still mired in controversy. The American Academy of Neurology (AAN) has expressed concerns about the lack of large-scale, placebo-controlled trials and the potential for adverse outcomes. Nonetheless, small-scale studies and patient testimonies continue to build a case for its effectiveness ​(Drugs.com).

Furthermore, the high cost of the procedure—ranging from $4,800 to $6,000—places it out of reach for many stroke survivors. Currently, perispinal etanercept treatment is not widely available in the U.S., but it has gained popularity in other parts of the world, particularly in Australia, where recent trials have been conducted ​(Drugs.com)​(SpringerLink).

The potential for perispinal etanercept to revolutionize stroke recovery is undeniable. Its ability to restore lost neurological functions and reduce chronic pain has given new hope to stroke survivors and their families. With ongoing research and increasing demand for effective post-stroke treatments, it is possible that we will see broader acceptance of this approach in the coming years.

For stroke survivors seeking alternative treatments, perispinal etanercept may offer a new avenue of hope. However, as with any medical treatment, it’s essential to consult with healthcare providers to understand the potential benefits and risks fully.

Perispinal etanercept is emerging as a groundbreaking intervention for stroke survivors suffering from chronic post-stroke symptoms. Though it has yet to become a mainstream treatment, the science behind it and the promising patient outcomes indicate that it could play a significant role in the future of stroke recovery. As research progresses, more individuals may benefit from this innovative therapy and regain crucial aspects of their lives long after their initial stroke.

Discover how paramedic Dwayne overcame some stroke challenges with Perispinal Etanercept. His inspiring journey offers insights for stroke survivors.

Etanercept for Stroke Recovery – Andrew Stopps

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Highlights:

00:00 Introduction
01:45 Basal Ganglia Stroke
04:34 Getting A Perispinal Etanercept Treatment
07:33 Life Before The Stroke
12:03 Dealing With Post-Stroke Deficits
17:44 Getting Back Into Cycling Again After A Stroke
23:59 Perispinal Etanercept Treatment Expectations
37:12 Perispinal Etanercept Treatment Initial Results
44:41 The Cost Of The Treatment
56:27 Perispinal Etanercept Treatment Honest Feedback
1:02:26 Possible Cause Of The Stroke
1:13:43 The Hardest Thing About The Stroke
1:15:52 Lessons From The Stroke
1:19:45 Being A Coach Recovery Coach
1:25:28 The Pseudobulbar Affect

Transcript:

Bill Gasiamis 0:00
Welcome to episode 320, of the Recovery After Stroke podcast. In this episode, I’m thrilled to introduce Dwayne Semple, who shares his incredible story of recovery after a basal ganglia stroke as a paramedic, Dwayne’s life was turned upside down when he experienced a stroke that left him unable to walk or move his left side. Through his determination, he’s found innovative ways to regain his independence, from local rehab to unconventional treatments like etanercept injections administered by Dr Tobinick.

Bill Gasiamis 0:36
Join us as Dwayne reflects on the challenges of stroke recovery, navigating life on a recumbent trike, and the hope he found through these therapies. This is a must-listen for anyone in recovery, offering insight, inspiration, and practical advice from Dwayne’s journey.

Bill Gasiamis 0:55
Before we dive into Dwayne’s story, I’d like to take a moment to talk about how you can support the podcast if you find these episodes helpful, inspiring or insightful, consider supporting the show through Patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:12
Your support helps keep the podcast going, allowing me to continue sharing these powerful stories that provide hope and practical advice for stroke survivors and their families, whether it’s covering production costs or helping spread the word to a wider audience, your contribution makes a difference, and I truly appreciate your support. Thank you for your consideration.

Bill Gasiamis 1:34
Dwayne Semple, Welcome to the podcast.

Dwayne Semple 1:37
Hi. Thanks for having me.

Bill Gasiamis 1:40
Pleasure. Thanks for being here. Tell me a little bit about what happened to you?

Dwayne Semple 1:45
Two years ago, in August, August 28 I had a basal ganglia stroke, right-sided and it put me out of commission for a few weeks, To say the least. Went to the local hospital, spent seven weeks there, started a rehab program there. We have a central rehab hospital in Halifax, Nova Scotia, which is about an hour from me. I was unable to get in to the seventh floor, which is the stroke and head injury unit at the time because of covid. So staff and patients were developing covid fairly quickly. They’d shut down the unit and we couldn’t get in.

Dwayne Semple 2:33
So I started my therapy through the local OT and physio works at the at the local at the local hospital, so my left side was affected, unable to move my arm, basically at the time, unable to sit up. So I had to be very careful. You know that I wasn’t tipping over on. You still there? Sorry, okay, no, my screen went all blown here, and I apologize. Yeah, so left side affected, unable to walk, unable to to move my left side vision was a little bit blurry, nothing too bad, but I still maintained my ability to speak, much to some people chagrin.

Dwayne Semple 3:28
Because I’m a talker by nature, and so, you know, I have two older brothers, and they said, you know, we tried for 55 years to get you to shut up, but we are so glad you can speak so that, I guess that was a bit of a testament. Anyway, following the seven weeks in the local stroke unit, I got moved to rehab. I spent another eight weeks in the rehab hospital, learning to walk, learning to, you know, do what I could with my arm, and then I was released just prior to Christmas 2022.

Dwayne Semple 4:03
Since then, it’s been home therapy and a bit of work with occupational therapy, physio is kind of let me go now, because my walkings, you know, not great. I’m still walking a bit stiff legged, but, but still, you know, moving on. Things have been, things have been pretty good, recently, I guess if that’s where I should go now, on the 25th of June sorry no it was before that, It was, that was my last injection.

Dwayne Semple 4:34
But I went to Boca, Raton, Florida, as you know, to see Dr. Tobinick about the perispinal etanercept injections, which I had heard from, you know, every source after you have a stroke. Whether it’s I have new tongue of bat or whatever, you know, urban remedy, people will start sending you saying, This is great for stroke.

Dwayne Semple 5:00
Yes, and this video did capture me a bit, and I know that it’s been, been widely viewed in other parts of the country, as well as, you know, across the world, because he has patients going there, from everywhere. I was a little bit, you know, concerned that it was snake oil sales when I started the research, and I spent, you know, a great amount of time thinking about it and researching it. And I’m a paramedic by trade, so I’m in medicine.

Dwayne Semple 5:33
And when we’re doing research, we always go to the in North America, at least, go to our our best sources, which are the New England Journal of Medicine, the Journal of American Medical Associates, and on and on. And that treatment is not something that, you know, highly recognized in any of these, in any of these journals. So I read the documents that I could find, which were, you know, the the manufacturers of etanercept, and, of course, Dr Tobernick studies that he had done himself, but that was about all.

Dwayne Semple 6:10
So that left me even less impressed. So I looked at both sides, the people that I could follow, who had success or felt they had success, and the folks that were dead against it, who said, you know that it is snake oil sales. And this guy just, you know, just doing whatever. And it was really one of the selling features was, I was watching one of your podcasts, and there was a gentleman, I forget if he was from Tasmania or somewhere, who had flown to the US.

Bill Gasiamis 6:40
New Zealand, Andrew Stopps.

Dwayne Semple 6:43
Yes and I was, you know, his account was honest, and so on, and I had researched it to that point where I was at the point of making the checkbox and saying yes. So I reached out, got, you know, an appointment for two injections and and from there I went. So it was, it was kind of your show that helped put me, put me over the edge a bit to go do it.

Bill Gasiamis 7:13
Before we talk about that other side of it. So I want to get a sense of the kind of work that you did beforehand. And you know your life and all the things that you were doing before stroke that were interrupted, and then, then we’ll talk about where you’re at now.

Dwayne Semple 7:33
Sure so I’m a lifelong cyclist, so I would put on a number of kilometers every week. I enjoyed riding for charity and so on and so forth. So I spent some time, you know, mountain biking and and road cycling. As I said, I’m a paramedic by trade. I’m a paramedic manager, so I’d been working, you know, a fair amount through the summer. We’re short handed. We have offload delays and hospitals and all that sort of thing. And so, you know, there was some extra work going on, but, you know, fairly fit, felt great most of the most of the time.

Dwayne Semple 8:14
And, you know, have a property that I love. It’s like living at your cottage where I live, and I’ve been, you know, we’re enjoying life. And following, following the stroke. Of course, I’m ‘Oh, yeah’ the other thing I guess I should say, is that that to get away from work along with the cycling, I have a little mechanic shop in the back, so I do bike repair as well. So that’s my that’s my stress relief and my get away from work as well. So when I had the had the stroke, the one number, number, one thing I was thinking about was, oh my gosh, I’m not going to be able to do any of that.

Dwayne Semple 8:48
I’m not going to be able to go in and wrench anymore. I can’t ride two wheels. What am I going to do? So, you know, following therapy and getting out of the hospital and rehab and returning home, getting through Christmas, I started watching videos and and I had a number of people who were inspiring me along the way. You know, different, different folks who were checking in on me or or calling.

Dwayne Semple 9:10
There’s another cyclist friend who winter winter cycles, and he gravel bikes and all sorts of things. And he would send me little videos of places he was going. And I thought that was amazing.

Dwayne Semple 9:19
And just recently, I met him on the trail, and I had to get a picture with him and post it on we have an Instagram account, of course, and as soon as I saw my I wanted to post that, because he really kept me, my tires pumped up and kept me moving anyway.

Dwayne Semple 9:34
I couldn’t, I couldn’t imagine what life was going to be like, not being able to to ride and work, for that matter, like right up until now, and I’m coming to the decision, actually in the next few days, or whether I’m going to be able to really return to work doing what I was doing.

Dwayne Semple 9:50
So that’s another chapter we’ll have to talk about another time. But I was coming into spring. Last year to 2023 with, you know, trying to figure out what it was going to be like. And all of a sudden I realized that I could still, I think I could still cycle if I used maybe a recumbent bike.

Bill Gasiamis 10:16
Let’s take a quick pause here, but we’ll be right back with Dwayne’s inspiring story in a moment before I continue, I wanted to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s not just a memoir, it’s a guide on how to achieve post traumatic growth after stroke. In this book, I share not only my own story, but also those of other stroke survivors who turned their trauma into an opportunity for growth.

Bill Gasiamis 10:44
If you’re seeking hope, resilience and practical steps to improve your life after stroke, this book is for you. You can find it on Amazon by searching my name, Bill Gasiamis, or by heading over to recoveryafterstroke.com/book.

Dwayne Semple 10:59
I was watching I’m not sure if you know of Paul Pritchett or not, he’s a climber from your area who fell and had was head injured, and he’s been his story is very inspiring as well, and I noticed he was on a recumbent cycle at one point in time, so I started researching. Anyway, there was a local gentleman eight kilometers from my house. There’s very few recumbent trikes in the area, and all of a sudden this appears on on a buy and sell, you know? So I went out, gave it a try and bought it anyway.

Dwayne Semple 11:35
Just to make my long story longer, I ended up on three wheels. And I’ve been, I’ve been having a hell of a time ripping around on this trike, trying to inspire, you know, some other, some other stroke folks as well, but, but more so for me, because it’s my, it’s it’s been my thing, and it’s been my release for many years. So the ability to get back out on the on the road, even on three wheels, not two, but three. I’m enjoying it yeah.

Bill Gasiamis 12:03
Yeah so the deficit that you have, what does it stop you from doing? So how does it impact your body, and what does it stop you from being able to do, specifically?

Dwayne Semple 12:16
Well, when it comes to cycling, my my leg is weak. There are muscles that aren’t activated, and so my heel turns in and touches a crank arm on a bike, and I can’t pedal it without being clipped in now, having left sided stroke and being weak in my right arm, I can’t grip the hand grips of the bike. If I do grip them, I’m scared that I won’t be able to let go if I dump it on the other hand when I when I try, I can’t hang on for any length of time. My hand sort of just opens up and falls off.

Dwayne Semple 12:47
Now I haven’t tried it in a while, because I’m so used to doing the the trike thing. Now, my walking is limited the bit of the balance issue, and I don’t know it’s it’s not as much balance as it is. I don’t trust my left side and my my because I had been walking for the last two years with my knee locked. Basically I was walking and using my leg as a splint.

Dwayne Semple 13:13
As you know that that happens with those of us that that can get up and walk when we do start walking, that that becomes an issue. So I can talk about that piece later, but I’ve built up some great strength in cycling on that side. So walking, getting around isn’t an issue.

Dwayne Semple 13:32
I won’t say walking is an issue, but getting around isn’t an issue. I lost strength, of course, in my my left arm, so I’m very limited in what I can do. And I was, and I’m left handed, so I am not writing with my right hand. It’s, it’s hen scratch at best. Well, my left hand was pretty much hen scratch too. But if you ask any of my colleagues, but I, you know I’ve done, I’ve done pretty well with the exception of that. So everything I did, including brush my teeth, eat and write, everything was with my my left hand.

Dwayne Semple 14:02
Now, if I was playing ice hockey or throwing a ball or whatever, that’s all right handed, so none of that stuff was affected, not that I play a whole lot of ball and not that I’m playing ice hockey, but those are the those things I do, did with my right hand anyway.

Bill Gasiamis 14:18
So you’re fairly.

Dwayne Semple 14:19
Oh yes, yeah, no, go ahead

Bill Gasiamis 14:23
You’re fairly active. You were out on the bike, balance is a big deal, walking is an issue. Everything that makes you kind of comfortable being in the spaces that you’ve been in before is a little bit altered, a little bit not right. So it’s a little bit you have to find a new way to go about things.

Bill Gasiamis 14:46
Now, I love the fact that you found the three wheeler. Reason being is because when I have left side deficits as well. So when I first started riding my bike again after many years, after brain surgery, my left leg needed to be clipped in. Well, not necessarily clipped, but I could do okay with the stirrup on the pedal.

Bill Gasiamis 15:08
And then what was happening was I’d get to a stop where I’d need to put my foot out, and I’d go to put my left foot out and forget that it was in the stirrup because I couldn’t feel it. And then instead of putting my leg down, I would fall over, come to a stop and fall over. And then that happened about that happened once. And then one time, riding the bike in our central business district, there was some construction work happening in that.

Bill Gasiamis 15:45
We call them lollipop guy with the stop sign road stopped me and said, Get off the bike. You’re going to have to walk it, just for here, because the roads closed. And exactly the same thing happened. I went to put my foot down, and it didn’t come out of the stirrup, and I fell again. And then I got sick of it, because what was happening is my foot was fatiguing very my left leg was fatiguing very, very quickly.

Bill Gasiamis 16:16
Even though it could sit on the pedal, it could do the movement. And sometimes my left arm, my left hand, would let go of the handlebars as well, and I’d find myself, you know, kind of in the worst scenario, letting go of the handlebars because my hand didn’t realize that it needed to continue holding on.

Bill Gasiamis 16:40
It would just kind of forget to so it was by chance, somebody mentioned that an older guy who was riding a bike mentioned that he had bought an electric battery operated bike that supports the pedaling. It doesn’t pedal for you. It just gives you a little bit of sort of, what does it give you, gives you a little bit of a support in that peddling motion.

Dwayne Semple 17:08
It’s an assistant. It is yeah.

Bill Gasiamis 17:09
Yeah, assistant, and then the foot wasn’t fatiguing. When I was doing that pedaling, my left foot wasn’t fatiguing. And I could ride for an hour. And therefore, because I wasn’t putting in so much effort, peddling, my left arm was also not fatiguing, and I could stay on the bike for longer, and I didn’t need a stirrup, which meant that when I needed to stop and put my foot down, it would work as per normal. And it was such a relief to be able to get back on on a bike and get moving.

Bill Gasiamis 17:11
And I know there’s a lot of stroke survivors who have found the three wheeled bikes, and that has enabled them to feel like it felt to be out and about, even though you’re sitting on your butt and you’re kind of reclined rather than upright in a bike, it’s they get the same sense of satisfaction being out there.

Dwayne Semple 18:06
It’s actually a better sense of satisfaction in some ways, because I see a lot more now sitting back and I’m able to look around. I don’t have to worry about potholes while I still have to worry about potholes, but I don’t have to worry about getting chucked off my my bike as easy and to I guess I should also preface this with the discussion around how I last year, I was in a ride with a group of people, and I was riding with a doctor friend of mine, and we were riding a recumbent trike, and we were kicking ass, if you will.

Dwayne Semple 18:38
When we were climbing hills, we were passing all our counterparts on on bikes, on bicycles. And they had, you know, 29 inch wheels, 2700 C wheels, and we were traveling on these 20 inch wheels, like is on my track. And you know, Mike would reach back, and I’d High Five him, and we would pass all these folks. And what I found out was he had a hub motor in the back. It was so quiet I didn’t even know it was there.

Dwayne Semple 18:59
And so he would turn it on as we were going uphill. So when I get home, I bought one, so I put a hub motor on mine. The thing will do 60-65, kilometers an hour. Now, don’t tell anybody, it’ll go really fast, but I don’t use it.

Dwayne Semple 19:13
I’m only using it for hills. And so I’ve had a lot, you know, I’ve done some charity rides already this year, and and, you know, I’m doing, you know, 80 100k a day kind of thing. I’m not peddling that every day, but when I do the rides, I’m doing that, and the electric assist has been such a great help. And I’m able, you know, to feel like I’m still part of the team and part of the game, because I can keep up and and I can ride along people, and I can assist the people who are slow, like, kind of one of my jobs was always sweet.

Dwayne Semple 19:40
I always want to take care of everybody and make sure they’re going to make it. Because everybody, everybody finishes right and, and so every hill that people need assistance climbing, and that sort of thing, I was always involved in that, and, and now I can do it again. I didn’t want to feel like I was the one they were helping. And this has allowed me to allowed me to do that. So.

Dwayne Semple 19:59
So this weekend, coming up next, Saturday, Sunday and Monday, we have a paramedic ride in Bridgewater, Nova Scotia, which is about two hours from here, and we’re going to Cloverleaf, and do probably read around 100k a day for the three days. And so I’m really looking forward to to getting together with my with my colleagues to do that.

Bill Gasiamis 20:19
Sensational, I love it now with the etanercept, the snake oil salesman stuff is interesting. I just watched the interview yesterday. The very first interview that I ever saw about it was done about nine years ago with a reporter from 60 minutes Australia. He traveled up to Dr Tobinick’s practice, he met some stroke survivors.

Bill Gasiamis 20:45
They had conversations before, they had conversations after, and they reported on two good outcomes during that particular 60 minutes episode. And then they’re interviewing Dr Tobinick, and Dr Tobinick is giving his feedback on what he’s able to achieve and the things that people have experienced. And then at the same time, he’s speaking to stroke survivors, and they are reporting back amazing outcomes.

Bill Gasiamis 21:15
And then he goes to a neurologist who is the opposing view, and he does talk about it as being snake oil salesman kind of things. And the reason he does that is not because there hasn’t been results, is because there hasn’t been studies done that he can refer to where he doesn’t have to take the word of Dr Tobinick for it. And it’s not that etarnercept isn’t something that hasn’t been around forever.

Bill Gasiamis 21:49
It’s off label, which means that it’s not patented anymore. And as a result of that, there isn’t an ability for anybody, as a pharmaceutical organization, for example, to own the rights to etanercept on their own. And as a result of that, nobody’s spending any money so that they can flog etanercept to the rest of the world and say ‘Hey, use this product for everything, like they do with other medications that are brand new, for example, that they invented.

Bill Gasiamis 22:20
So I think it’s a little bit dishonest when somebody does a negative version of about a product where there’s no evidence, because nobody will fund the evidence. I think it’s a little dishonest, like until somebody has funded the study, and that has been proven one way or another. I don’t think anybody should have the right to call out somebody no when the proof should be in the pudding.

Bill Gasiamis 22:58
To an extent, you know, evidence of somebody actually using it and walking is evidence like it’s legitimate, even though it hasn’t been written down and put in, put into a study. And when you’re a stroke survivor, and regardless of what you’re recovering from, some people need hope instead of having that hope diminished. And that’s the part that isn’t spoken about enough.

Bill Gasiamis 23:30
The ‘Why is this thing considered by some to be snake oil? That’s the part that isn’t spoken enough. It’s not because it hasn’t worked for some people, it also hasn’t worked for some for some other people. So that’s important to note. It doesn’t work for everybody, and it’s usually the type of stroke and the deficits and whether or not that person has any recoverable areas in the brain.

Dwayne Semple 23:59
That’s correct. And Dr Tobinick is really good about when you have your first conversation with him, he is very upfront. He doesn’t say this is going to work for you. I’m selling you this wonderful product, and I’m going to stick a needle in your neck and you’re going to walk again. He by no means does he do that. He gets your medical record ahead of time, and he tells you that, you know, he said, Okay, where your stroke is? We’ve had some luck there. We’ve had some we’ve had some good luck.

Dwayne Semple 24:23
He said, I would expect this is what’s going to happen. You’re probably, you know, going to get, you know, sensation back and you know in your limbs, potentially, if you don’t have it, you’re going to your stroke, pains are going to go away, hopefully your your specificity lessens or goes away. We would hope. But I’m going to tell you that probably whatever you’ve gained in the use of your arm and shoulder right now, you’re probably only going to gain 40% of what you’ve already gotten, and you’re probably, you know, so he was, I felt very it was very honest.

Dwayne Semple 24:55
He didn’t give me any high hopes. He just gave me some stuff to think about. He said I was young, I was a good candidate, and I didn’t see any song and dance about it. He talked about him that he didn’t talk about it the patient specifically, but he talked about a patient who was from the area that lived in, in a place that was, you know, nearby me.

Dwayne Semple 25:18
And he and I are the only two so far that have from our, you know, from the province of Nova Scotia, that have gone now, there is, I know that you’ve talked with a friend of mine, Steve, who is, who is on his way this weekend or next weekend.

Bill Gasiamis 25:31
Steve Lawrence.

Dwayne Semple 25:32
Steve Lawrence yeah.

Bill Gasiamis 25:33
He’s going live on Monday, like in couple of days.

Dwayne Semple 25:38
Awesome, I will, I will certainly tune in. He’s got a great story. And he saw a comment I made, and it was probably your podcast that I had made a comment on. And he must research everybody, because he tracked me down. And I was just on my I was actually at the airport on my way home from Florida at the time, and so he came to see me. He does. He lives about an hour away from me. So he came and we met at a park and had a great walk with his dog and his wife, and had a great chat about it.

Dwayne Semple 26:14
And you know, I was very honest about what happened for me and I told a little story that I’ll tell you about another gentleman as well. But Tobinick is very it. Was very honest about it. And he also said, you know, 2% of the people that we have have zero effect. There’s there’s absolutely nothing. He said it goes from something very minimal, like numbness and tingling going away, to people that get up and walk more steps than they’ve ever walked and and so, you know, all of that combined was really ‘the Okay, Sign me up.

Dwayne Semple 26:46
So we reached out in February. I hoping, hoping that we would get to go to Florida in February, because it would be nice and warm there. And it was cold here at the time, but we went there. It was 30 degrees here. It was 42 there for a week, so it was very warm. We we went to Tobernick’s office for the first assessment. And they do, you know, the here, I’m not sure what they do in other countries, I really don’t know, but they do, you know, the Mocha test and a bunch of different things they do, balance tests. They get you to walk, and time you’re walking, and that sort of thing?

Intro 28:57
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 29:26
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Dwayne Semple 29:59
And then following the injection when you go for your second assessment. So I went for a second assessment, and they checked to see what your improvement is, and and they do some of those measurements again now, because cognitively, I was pretty good. As you can see, I was, you know, I don’t speak terribly. I had no real deficits that way, so it was hard to gauge a lot. But there were some things when I went for the second assessment.

Dwayne Semple 30:30
But anyway, following the first assessment, I went the next the next day, and had the had the injection. I’m I’m sure you know all about the injection. They do a paraspinal injection between the fifth and sixth vertebrae, and then they tip you upside down for seven minutes.

Dwayne Semple 30:48
I’ll tell you in seven seconds after I had the first injection, I had numbness that you know, started my set and it went left to my earlobe, and it only moved an inch, but it moved enough so that it cleared my tongue so I can taste again on the on the left side of my tongue, except in the very rim of it, because I was biting it all the time.

Dwayne Semple 31:11
And that got better, I could taste again. I knew that sensation when it changed. It was just like this warm feeling in my tongue. My tongue sort of got got better. I didn’t really notice anything. He said, can you put your arm up? Well, I said, That’s unfair, because I’m laying upside down. If I pick my arm off, it’s going to fall over my head, and you’re going to take credit for that where it’s where it’s gravity.

Dwayne Semple 31:34
And he kind of laughed, and they sat me back up again, and instead of having 50 pounds of weight in my arm, I had 25 now I still wasn’t moving at any, better the pins and wasn’t pins and needles that I had, I was a bit hypersensitive, and I the only explanation I can give you that would make you understand is that instead of, you know, when I when you touch Velcro, it felt more like thistles and thorns.

Dwayne Semple 32:02
It was a lot sharper, so the feeling was more intense, or it was a bit hypersensitive. If it was hot, it was fairly like, really hot, reasonably hot would be really hot, and cool would be cold, but ice didn’t, you know, I could tell the difference in temperatures, but so now it’s just numb, It’s not hypersensitive like that, the sole of my foot. By that night, the sole of my foot, I became ticklish again. So I’m, I’m jumping again. I was a ticklish dude to start with.

Dwayne Semple 32:20
So if I fell asleep with my hands on my abdomen and I twitched in the night, you’d have to peel me off the ceiling fan because I jump. So that might not be a good thing, but it’s a, it seemed like a positive sign, right? So we said, How about your stroke pain? And I guess I should mention that my trapezius muscle into my deltoid, down my my lats, down my back and around my shoulder blade. I had this two or three out of 10 achy nai stroke pain, and a lot of people have it.

Dwayne Semple 33:10
I didn’t realize that’s gone, there’s none. And so I was quite excited about that when I realized it was gone, because that was a little something like throughout the day, if I had a long, hard day doing something or doing nothing, and that was achy. It would make me a bit irritable, and I didn’t care much for that. I like to be irritable. I like to be a happy guy, and, you know, doing my doing my thing, but that and that, and that’s maintained since the very first injection.

Dwayne Semple 33:39
Anyway. What else so my my gait changed, I felt something activate differently in my I guess my lower back, or into my glutes. And the the walking stiff legged had changed to me being able to to kind of walk normally again. Now I’m still walking a little bit stiff legged, but I but I’m able to maintain an almost normal walk.

Dwayne Semple 34:06
It feels like I’m walking like a chimpanzee when I’m doing it, but my wife videoed me in a mall the next I don’t know if it was the same day or the next day after the first injection, and she posted it on on Facebook or Instagram and send it to family, just to say, hey, look what’s happened here, where I’d been, where I’d been walking, totally different.

Dwayne Semple 34:28
So that had changed. My gait is shorter, but I’m walking faster, so it feels better. What else? She says, my face looks better. I knew I noticed a facial droop on this side, but it’s not as pronounced now. And I was always rubbing the side of my face because I didn’t know if I was drooling or I felt like I was. I’m not. I’m hardly doing that at all anyway.

Dwayne Semple 34:55
And the other thing, these damn things so my readers. I seldom put those on now, I used to have them on all the time, if I pulled my phone out, or if I looked at a meal, if I was reading a magazine or reading whatever I needed to have these right beside me.

Dwayne Semple 35:11
And I put them away. And I have a little a little bag that I carry with my wallet and stuff in it, and I tucked my glasses in it now, and I forget sometimes to even take them out when I’m reading. And so I didn’t even realize that was a thing that.

Bill Gasiamis 35:30
And that was not related to the stroke. That was just eyesight.

Dwayne Semple 35:33
No, that was eyesight, I had started wearing readers probably a year before I went to my Eye-Doc, and she said, She said ‘Your vision is 20/20, what you need is more light. And I said, No, what I need is glasses. So she said, I’ll write your script for readers, that’s all you need. So I went to one of the local shops and just bought some readers, and now I have them laying everywhere. But I did find that once I had light, it made a big difference, but after the stroke, being in hospital, as long as I was, I always had these glasses on because I was always reading.

Dwayne Semple 36:10
I was always doing trying to keep my brain occupied. And the unfortunate thing is, always spent a lot of time on my phone too. And I, you know, criticize people for spending way too much time on their tablets and their phones. But here I here I am doing it. But anyway, that seems to be another, another benefit I had. I had a number of benefits, so the fatigue is the other thing.

Dwayne Semple 36:32
So I still get fatigue, but not like I did before. I would go out to my my bike shop and tinker around in the mornings until noon, 1230 come in, make lunch for my wife and I, and then I’d rest until, say, two, and go back out for another hour or two, and then come in and be in, be fatigued at dinner time.

Dwayne Semple 36:54
Now, I don’t spend the hour at noon doing anything. I barely even come in to make lunch. I just I’m there, you know, morning until evening and and we do dinner and and watch a little TV and go to bed. So my my stamina seems to be a little better that way. So I’m appreciating that as well.

Bill Gasiamis 37:12
Fantastic. So how many injections did you have?

Dwayne Semple 37:16
I had two. As I said, I went back in for a second assessment. Five days later, after the first injection, my scores had improved. My times were faster, my speed was faster, walking now this is them timing it. So if you want to be, you know, pessimistic and say, Well, you know, they, you really, you know, they just compare the times and add a couple of seconds, or take a couple of seconds off whatever. I don’t know, but it all seemed on the up and up to me.

Dwayne Semple 37:46
And I mean, and if I go back and talk about Steve again for a second, Steve was very, very critical about he wanted to be very critical about it, because he wanted to make sure he’s doing the right thing. And I’m like, I can’t tell you. I can tell you, you know, here’s what I what I did, and what I’ve been doing, and how this is how this has affected me.

Dwayne Semple 38:05
So following the second assessment, I went in for my injection. Now, if I may, I want to tell a bit of a side story, because while we were waiting to go in on the second day, or sorry for the second assessment, they wheeled a gentleman out who was in a wheelchair, who was atrophied on his right side in his wheelchair, head down, a facial droop, you know, obviously a stroke. I know the signs very well from my from my experience, of course, now, but for my profession as well.

Dwayne Semple 38:40
I speak to everyone. So I spoke to the gentleman, and he he was telling how he had had his stroke eight years before, how he was hoping that he could, he could he could walk, because all he could do is take a couple of steps to get, you know, to the commode, to the bed, to whatever he had moved from a Minnesota, to to Phoenix, Arizona, because he was so cold the last eight years following the stroke and so on. But anyway, he said, ‘Oh yes, we he wasn’t able to really use his arm a whole lot, because when he would move, it going to spasm, and he basically did it there, and it spasmed.

Dwayne Semple 39:21
So fast forward to the next day, when I was going in for my second injection, and he would have been there for his first his wife wheeled him out while she was waiting for their cab to come and pick them up. And he is his hand in the air, doing this the right hand touching one finger.

Dwayne Semple 39:38
He was he was doing that and I was amazed. So I said, did you get up and walk? And he said, I took about four steps. And so I was really terribly impressed with with that. And so happy for him, because he was elated. His face was like mine, like he was just smiling, and His face looked normal, and and so on. And his wife was was ecstatic. So hopefully that’s all gone well for. Him, but if that is what I saw like, I shouldn’t put it like that, because that is what I saw.

Dwayne Semple 40:06
But if, but if he was in as bad a shape as he was to start out with, and had all of those deficits and that happened, that’s, you know, that’s miraculous at eight years, but that’s fantastic for him and and you know that that was a bit more proof for me that things, things were, you know, going in the right direction, and that this wasn’t just, you know, just some voodoo medicine that was happening.

Dwayne Semple 40:35
Following that sort I digressed there, but I wanted to tell that story because that, of all things, even for the great things that had happened to me while I was there, that was a great thing for that gentleman. And I was, I was really impressed by that.

Dwayne Semple 40:49
Anyway, we went into the second injection. There was another gentleman there from New Zealand, I think, at that day, ahead of me, and they were making a lot of him because of the distance he had traveled. And so we waited a little bit, we went in and they, I talked with, with the doc again, about how things are going. And he did, he did the videos that he does I and so I’m online now. I’m youtube famous, my few minutes of fame on Tobinick’s office. But he, he asked a number of questions and did the second injection.

Dwayne Semple 41:30
And I didn’t feel anything, I didn’t feel a damn thing, and I was a little bit disappointed, but as a as I sat there talking to him, I could feel something that there was like something happening in my shoulder, and I wanted to play around with it and see what it was, right? So there’s a movement that I couldn’t do before, and that’s going from from my arm being up lateral and moving it straight out, that I couldn’t do, and now I can do it. So there’s a muscle that was activated but, but that was kind of the only thing following the second injection. And so, you know, for me, I feel, you know, very lucky.

Dwayne Semple 42:09
I’ve had some great support. I’ve had some fantastic, you know, fantastic support from friends and family. My wife is absolutely wonderful. I can’t say enough about all of the all of the hard work that she’s done. And she she sat by my side 12 hours a day for seven weeks while I was in one hospital, and was there for me the whole time. And was, you know, the biggest inspiration for me to keep to keep moving forward. And she keeps pushing me. And I’m, you know, I’m feeling great right now.

Dwayne Semple 42:39
If someone were to ask me if, if this was the thing they needed to do, I would say, I don’t know you need to do what’s right for you. Here’s what it did for me. And you know, I spent a lot of time trying to make up my mind, and I studied every little bit. I read some stuff that was negative, that made me feel bad about it, and there are things that I watched that I think are miracles, because I’m not sure that it actually, it was the power of the human body. I think that did it for some folks.

Bill Gasiamis 43:11
You think it was the power of the human body that did it for some you think it was a little bit of a placebo, perhaps for some people.

Dwayne Semple 43:18
Some people placebo effect, I’ve, I mean, I’ve, again, in different studies and different issues in medicine that I’ve seen over the years, I’ve seen people, you know, cured by placebo. You know, people who were thinking they were getting pain medication that we’re getting, you know, saline.

Bill Gasiamis 43:39
But in this case, there’s no placebo, there’s the actual injection. The placebo doesn’t really apply surely.

Dwayne Semple 43:47
No, no, but that’s the thing. And I’m a believer. They convinced me, but they also convinced me that it doesn’t work in everybody, so. You know the potential was there, so I’m and I went fully expecting to be disappointed. I know I shouldn’t say it like that. I was prepared to be disappointed, let me put it that way, that I wasn’t going to be I was willing to take the risk. So, yeah, I’m glad I did. I can’t say that I’m unhappy in any way, shape or form, other than it was 40 degree weather, and it was a hot 10 days while we were there.

Bill Gasiamis 44:28
40 degrees celsius?

Dwayne Semple 44:30
Yes, yeah.

Bill Gasiamis 44:31
My gosh, over 100 Fahrenheit. And what did it cost you?

Dwayne Semple 44:41
It was $8,400 US currency for each shot. So Canadian, the trip cost me 30,000. That would have cost me $30,000 Canadian, so that’s, you know, that’s my hotels rent, you know, we had an Airbnb, so place to stay, food to eat, transportation for my wife and I, and then the two injections. So it would have been about $12,200 per injection, Canadian, I think, is how it worked out, somewhere in that vicinity.

Bill Gasiamis 45:17
Right, It’s a lot of money, in your case, money well spent. And that’s the challenge that other people sort of go through, is that, you know that, why is this guy charging so much for an injection that’s off label and blah, blah, blah, you know, there’s a lot of conversation about that, and I’m not sure whether that is, whether there’s any reason to have that conversation or not. The guy is doing amazing things, He’s has to be able to charge an amount of money that’s going to make it worthwhile.

Bill Gasiamis 45:59
That is why nobody else is doing it? Because perhaps they don’t see there as being any money in it. He is improving people’s lives. And I imagine he would have a lot of people who haven’t had a good result struggle with that, and I imagine that he’s struggling with, not struggling, but he would have people that are going after him, you know, at risk of people going after him legally and all that kind of stuff. So there has to be a buck in it, otherwise nobody.

Dwayne Semple 46:35
Wouldn’t be worth it. And he has, you know, he has a number of staff. So he is, he has probably three or four people that that are office staff, and then he has another half a dozen, at least, assistants that do the assessments and things for him. So, you know, he has to have, I would say they’re now, I didn’t ask everybody what their their jobs were, but there were occupation I know that there were two occupational therapy folks there, as well as as well as sort of residents that were working with him.

Dwayne Semple 47:06
One girl who had been working with him for a while that was going off to back to school to get her doctorate. And there was a another girl who had just come in from Brazil, who was had studied as a nurse, nurse practitioner. So those were the, you know, kind of the limited number of people that I talked to while I was there, but I pretty much had the same, the same team that worked with me, excuse me, during the two injections.

Bill Gasiamis 47:34
Yeah. So it’s not one guy on his own in a clinic just taking people in and injecting them, and then out of there.

Dwayne Semple 47:43
Sending them on their way. Yeah, no, excuse me. It does feel kind of assembly line like, but he only hit yes. He has six people a day, excuse me, and it takes about an hour, like we were there, probably two hours the second day and the second injection.

Dwayne Semple 47:59
But he wanted to talk about where I lived in Canada, like because his other patient, that was from Nova Scotia, lived lives only 20 minutes for me. And so he has a world map that sits behind you, and he has pins in it. And the pin, each pin is one person, but if there’s a cluster people come from a certain area, he puts more than one big pin.

Dwayne Semple 48:20
It puts a bigger pin in to demonstrate, you know, 10 people or whatever. And so we were talking about the area that we live in, because this area, we have the highest tides in the world in this area called the Bay of Fundy and and they it’s kind of like white water rafting on it when the tide comes in in this in the summer, from, you know, the end of May, until September, into September, people ride these waves when they come in.

Dwayne Semple 48:45
So they go right from right from sea level, right from the ground, as the water’s coming in, picks these rafts up and things, anyway, we had this great conversation about about the about the the title, or rafting and things that happened here. And he’s very interested, you know, and in the the seafood that they they get out of that area, you know, the clams and oysters and mussels and that sort of thing.

Dwayne Semple 49:08
So we had a great conversation, at one point, I’m thinking, this guy just wants to talk about where I’m from. He’s not interested in sticking a needle in my neck at all, right, so, but he was, he’s very personable, and he was really quick down to earth.

Dwayne Semple 49:22
You know, he’s even even dug out a few of the studies and, you know, pictures of things when they did, when they were testing into intercept on lab rats and things and the folks that were trying to disprove his his theories, and actually proved him correct by making their own mistakes, according to him, in the videos and things that he was showing me. So I thought that was, you know, there was, it was.

Bill Gasiamis 49:47
In the 60 Minutes interview they do a functional MRI, I believe, of one of the patients who has the injection before and then one of the patients after the injection, the same patient after the injection. Action. I’m not exactly sure how far down, but they do see a larger amount of activity in the brain after the injection, and it’s not immediately after, it might be a few days later that the person has the injection.

Bill Gasiamis 50:18
So they they have got a lot of evidence to show positive outcomes, not to mention the hundreds of videos on the Institute of neurological recovery YouTube channel now, which are pretty compelling as it is, so, I would encourage people who are listening and watching to do their own research and make up their own Absolutely, and reach out to people who have been been there before, and get some feedback. And also see, I’m struggling to find people who haven’t had a good result so I can interview somebody like that as well.

Bill Gasiamis 51:10
They’re probably I know them, they may not be as enthusiastic to talk about their experience. So that would be good if I could find somebody in that situation that would like to talk about it so I could also pull forward a balanced view of this, but at the same time, I’m not going to hesitate interviewing anybody who has had a tennis set, because the whole purpose of this podcast is to bring people to solutions, amongst other things.

Bill Gasiamis 51:38
And that’s what I want. I wanted. I wanted people to come to me and go, Hey, there’s this thing, and you should look into it, because somebody else has had a good result and somebody else hasn’t had a good result. But some, there might be some hope there.

Bill Gasiamis 51:53
That’s it. That’s what we want to do now. I appreciate the difficulty in funding such trip, $30,000 Canadian dollars is a lot of money, you know, to come by. And I would say that if somebody is very committed to doing that, there’s funds. There’s way to to raise funds as well. You know, there’s the, what do they call them these days, those GoFundMe campaigns.

Dwayne Semple 52:26
Oh, GoFundMe pages yep yeah.

Bill Gasiamis 52:27
Yeah, etc. so there are ways that you can raise the money and you can get creative. And if you really want to go and and try it out, I should, I would encourage you to do the work and find out for yourself. And you know, ring the office, go and see Tobinick, have the initial assessment, do whatever you need to do to feel convinced one way or another, whether you should go after it or not. So I’m really glad to speak to you Dwayne.

Dwayne Semple 52:56
I went to the YouTube channel, and I went through a number of videos, and I looked for anything, and I know that they could control it as well. They could, probably snip out anything that that people put in that’s negative. But I found nothing and the one there was one person that had a very inquisitive question, and I thought maybe they were being backhanded.

Dwayne Semple 53:19
So I reached out to them to see and they were like, No, my question was, and I said, well, I want to do the proper research, and I want to find out if, you know, if someone has had a bad experience, what it is, because there’s no risk like there.

Dwayne Semple 53:37
I’ve not heard of anyone who’s, you know, had a seizure while they were on the table or had another stroke, or anything of this nature, because that was a concern. And when I talked to him, he said, No, we’ve had nothing like that here. And so everything seemed very risk free. And so I went, you know, when I went to my physiatrist, when I talked to my occupational therapist, when I talked to my own physician, they all looked at me like I had two heads.

Dwayne Semple 54:00
But when I gave them my compelling evidence, which was what I did, I studied it, they didn’t all that they they basically kind of heard about it, but never really did anything of, you know, like never, looked into it, a whole lot themselves. They all said, Is there a risk? And I said, No. And so the I said, the only risk is losing my money by going and not getting, not getting anything out of it. And so at the end of the day, I did. I made the risk, I got some benefit, and I feel good.

Dwayne Semple 54:36
So, you know, I win in that case. However, you know, maybe the next person that goes and doesn’t get as much of an effect, or no effect, or yet, maybe they get up and walk again and, you know, and if that’s the case, then, then I am absolutely all for it. I you know, I said everybody. Was, reaching out with all their home remedies and so on.

Dwayne Semple 55:04
You know, using psilocybin, like eating mushroom gummies, eating cannabis products, you know, all of those things are, are shown to help people in some way, shape or form, different herbal teas, and all these other things that people were pushing, but none of that stuff, any of the stuff that I tried, didn’t help me nearly as much as this did And would I pay, you know, would I pay $30,000 for some magic mushrooms to help me concentrate better.

Dwayne Semple 55:44
I don’t think so, but I certainly paid 30 grand to do this. So, you know, I but again, I did that with a lot of support. The money was mine. I’m a bit of a proud guy, and I didn’t put my hand out at all, but I did also I had some acute illness insurance that paid out when I had the stroke, and this was, this was what it was for. So I’m happy that I had that. If I hadn’t, I might have second guessed how this all went. But even even my financial people were like, there’s no risk to your health. It’s only money man, go do it.

Bill Gasiamis 56:27
You only live once. Man, I completely agree with you. Tell me about like, on a scale of one to 10. If one is zero, nothing happened. It’s terrible, and 10 is amazing. The most amazing things happened, and it’s fantastic. Go for it. On what’s your experience? What would you say your experience of the positive outcome? How would you rate the positive outcome, from one to 10?

Dwayne Semple 56:54
Well, if, if you were to say, nothing happened and obviously, 10, I’m cured. This would have been maybe a five, but the but the experience itself, for getting rid of the pain and changing some of the things and making what I’ve got left for life, which is hopefully another 40 years bearable, right? I’ve got a better quality of life because of it. You know, it that that ranks a little higher, that ranks, you know, that ranks up in in a 9 or 10.

Dwayne Semple 57:25
But that’s a personal view, not, you know, from from where I was to where I am, knowing that, you know, I had no, I had no expectation that I was going to start throwing a baseball or something with my left hand or playing the piano.

Dwayne Semple 57:37
Oh, wait, I never played the piano to start with. But that would have been really amazing. However, I, you know, I’m really happy with what, with, with how it went. I could I, you know, I could be walking normal, and I could be, I could be, you know, have all my movements. I could be back on my two wheels and, and, you know, living life carefree, that wasn’t what I expected. That wasn’t what I had studied that would happen and and, you know, you know, there were some small miracles that happened, and I certainly appreciate it.

Dwayne Semple 58:09
I appreciated the candid, the candidacy that that he had, Dr tobernick with me about what, what potentially could happen and what may not happen, and and you know, here I am happy, happy and willing to to support others, and I’m doing this. I’m doing that every day, so.

Bill Gasiamis 58:33
Yeah, and you’re willing to talk about it and share your story. And that says a lot as well. So what about how long has it been since the injections? Now, what’s the time that’s elapsed?

Dwayne Semple 58:45
25th of July. So, you know, we’re, we’re about a month and a half now-ish, kinda, yeah, I guess about a month and a half.

Bill Gasiamis 58:55
Is there any discussion or understanding about whether or not the the the results that you got wear off or continue to improve over time. What’s the longs of crisis?

Dwayne Semple 59:10
I certainly asked that question. And, you know, they say some folks that had their injections 12 years ago have not had any fallback. There was, there’s no returning symptoms. Others had, you know, fall a month following, we’re back for a second injection or, you know, had issues pop up. But on the most part, a lot of people have, have had no, you know, that had positive results, have had no recourse, like, nothing’s come back.

Dwayne Semple 59:43
Although some people, you know, of course, have secondary strokes and that sort of thing following. So again, they were pretty honest about all of that as well. They, they, you know, they, they basically tell you, now you need to, you need to this, this, you’ve had positive results now. It’s up to you to maintain your health, right?

Dwayne Semple 1:00:02
So don’t start smoking again. Don’t like, I wasn’t a smoker at the time, for sure. But you know they’re like, because, because you had a stroke and you haven’t smoked in six years now that you can, you know, move your arms again. Don’t start putting cigarettes to your mouth. You know that that’s sort of the thing, that they’re that they’re that they’re they’re telling you, you know, take your medicines, stay healthy, eat good food, right?

Bill Gasiamis 1:00:25
Personal Responsibility. It’s really, definitely, absolutely necessary for somebody to take action to prevent themselves from having another stroke and also to keep the gains that they have received achieved. It would be terrible for somebody to go through all of the trouble that stroke has created, have an injection, recover, and then start in bad habits again.

Dwayne Semple 1:00:56
I’ve never, you know, I I’ve been a paramedic almost well, I have been a paramedic for 40 years. I started when I was young, back in the days when funeral homes and it ran ambulance services, I never once had a patient say to me, geez, I wish I had to work harder. You know, I’ve always had a lot of people say to me ‘Boy, I wish I had taken better care of my health.

Dwayne Semple 1:01:17
Right? You hear that all the time. And so for those that don’t, and I was one of them. I mean, you know, when I went into management, I was eating, eating, you know, fast food for meals and things at meetings and whatever, not exercising, stressed out, go home and go to bed instead of going for a walk or whatever. I gained a lot of weight. And I had comorbidities. Both my mom and dad had comorbidities, you know, heart and heart disease, strokes.

Dwayne Semple 1:01:44
My mom was a brittle diabetic, and so I developed diabetes in 2020 during covid, I was taking oral medications and trying to keep my sugar down with diet and high blood pressure had set in.

Dwayne Semple 1:01:58
I never had a high blood pressure reading in my entire life until 2020, and so there’s two, two big risk factors right there. And no doubt in my mind that that those were certainly the major contributing factors. You know, the the diabetes and the high blood pressure and my stress level. Of course, working in emergency health services. Is a big thing. So.

Bill Gasiamis 1:02:26
What was the underlying cause of the stroke?

Dwayne Semple 1:02:31
They didn’t really say a whole lot about what it you know, there’s a lot of what could be’s, but I will tell you that my physiatrist and my OT my occupational therapist are both. I go in. I just had a meeting on Friday with my, my physiatrist and I meet with my occupational therapist this coming Monday, and we’re going to discuss my return to work. And they don’t want me to go back to work.

Dwayne Semple 1:03:01
They want me to finish out on my long-term until my retirement, and go that way. They figure if I go back with the high pressure that I have in the particular job I have, that chances are I’ll probably have another stroke. And they don’t want that.

Dwayne Semple 1:03:20
They said, I’ve done a lot of work to get back on my feet and and, you know, try and inspire others to do the same. And I feel really good about that. But, you know, I also want to feel as and I’m sure you know what I’m talking about, you want to feel like you’re a productive member of society.

Dwayne Semple 1:03:40
You don’t want to lay down and die, and I don’t want to be a guy who gets up in the morning and, you know, goes to the coffee shop and sits around with a bunch of guys 10 years older than me who’ve all retired or whatever, and and have my coffee and tell my lies and go back home and read the newspaper like I want to be productive.

Dwayne Semple 1:03:57
I really, really do. So I’ve, you know, I volunteer with a number of groups right now, and I’m still writing, and I have another young chap who was a bit of a superstar here, and he was in a bad accident a number of years ago in 2020, I guess it was. And then while he was in when he had his accident and was unresponsive, he had a stroke. And so he and I walk and talk and move very, very similarly.

Dwayne Semple 1:04:31
And so his friends were a little concerned about him, because, you know, this is a guy that’s been famous since he was 16 years old. He only lives a few kilometers from me, so I go pick him up and take him out for coffee now, because they were concerned.

Dwayne Semple 1:04:46
So we go do coffee and things and exercise together and whatever. So that’s given me a bit of a purpose, right to to kind of help him along. So maybe someday you’ll get to interview him. That would be, that would be quite amazing. He’s an interesting character.

Bill Gasiamis 1:04:59
Yeah. Why not? So what’s it like being the patient instead of the support?

Dwayne Semple 1:05:05
For the first for the first time? Right? So I was 55 years old when I had my stroke. It always talked about retiring at 55 but that’s not the way to go out, and I had never been admitted in hospital myself, ever. I’d been in for stitches. I’d been in for coughs, colds and that sort of thing, you know, X rays, ECGs, you know, health checks and that sort of thing.

Dwayne Semple 1:05:34
Never been a patient. And I was told I was the best patient they ever had in the stroke unit, because I did not want to bother them. I would not ring the bell, I would not like I only rang the bell twice in seven weeks while I was there. But of course, I had my wife who sat beside me for seven weeks too, so that was the bell ringer through the day. But I certainly I I didn’t want to inconvenience anybody at all. Again, I had, I had, you know, a pretty good grasp on things. I was able to, you know, move, reach the things I needed to reach, and get where I needed to go. I could get to the washroom.

Dwayne Semple 1:06:14
You know, they had me up showering the next day, and I basically learned how to shower with one arm and one leg on a commode and that sort of thing and and so I wanted to to get back to whatever the normal was going to be, I wanted to get there quick. And so I they tell me again, I was a good patient, but I certainly didn’t think I was, because for me to be a patient was a bad thing, right? I was always trying to help the guy in the bed next to me or whatever, right? So, unfortunate trait I think I got from my dad.

Bill Gasiamis 1:06:50
Yeah, that’s pretty cool. Though, you still have a lot of insights, you’re a paramedic. Somebody needs help next to you, well, you can shed some light on that. You’re not taking their blood pressure, you’re not injecting them with anything. You might just chat to them. There’s nothing wrong with that.

Dwayne Semple 1:07:08
Well, I tell another quick story. So when I went in by ambulance, and of course, it’s my own cruise, right? It’s people I know that come to pick me up the night I had the stroke, I had numbness in my hand, and my wife had her hand on my chest, I guess she was asleep, and I kind of wiggled to get her off me, because I just felt like it was the weight of that, her, her shoulder, whatever that caused that. So then I realized my leg was feeling the same. So I got up and took a step, and what I found was that that my step was funny, and my foot felt funny. I took the second step down and went.

Dwayne Semple 1:07:45
So anyway, I hollered. She called 911, paramedics came and took me into the hospital. And when I get there, of course, there’s some of my old staff who work as paramedics in the ER, are there, and they’re like, Oh, my heavens, what happened to you? And oh, you seem good. You know, your grips are good, and so on. So at that time, I was using both both hands. I could touch my nose and touch the doc finger both arms, and things were coming back. It felt a little weird, but things were coming back.

Dwayne Semple 1:08:13
So it was kind of like it was transient. And so I thought, wow, I’ve had a TIA. That’s really bad, right? I needed to go to the washroom. So I begged the nurse, please don’t let me bring a commodity and let me go to the washroom. So I walked down to the paramedic washroom, which is at the end of the hallway, and she came with me to make sure I didn’t fall so I felt good about that.

Dwayne Semple 1:08:32
When I got back, they had my I guess they were prepped to send me for CT scan. My wife has an autoimmune condition, and she had an attack while I was there, and it mimics heart attack in a way. She has chest pain, but it’s called Hae.

Dwayne Semple 1:08:48
It’s hereditary angioedema. So she had an attack while I was down having my CT scan. So I get back, and the doctors says, says ‘Dwayne, now I need to tell you, Roz has developed some chest pain, and I’m like, okay, so she it’s an Hae attack. Here’s what you need to do. You need to get the large bore IV, and you need to start giving your fluid. If you give her a bit of morphine, that’ll make the pain go away. And she takes a c1 esterase inhibitor called Baronet.

Dwayne Semple 1:09:14
If you give her that, okay, IV, she needs 4500 units. And she also should take her auto or, it’s not an auto injector, but her preload injection of fears there, which is called a catamaran.

Dwayne Semple 1:09:26
So it’s a it’s kind of like the epinephrine to a bee sting or an anaphylactic reaction. And the doc’s looking at me like, I have two heads. And he said, Dude, you’re having a stroke, and you’re telling me how to do this. And I’m like, I’m sorry, that’s who I am. So anyway, when the medication came down, they didn’t know how to mix it, because it’s if they mix a liquid, like a little vial of saline into a dry, a dry medicine and makes a sort of a viscous stuff, anyway, so I get up and I mixed it for them.

Dwayne Semple 1:09:55
They were, like, totally lost at how to mix it. So he’s, like, you mix that for them, like, anyway. Right? So he came in and said, You know, I think probably when she’s done and your, your your symptoms are going away, we’re probably going to send you home. So I said, Okay, great. He said, you just rest and and have a nap. And when we go to do shift change, I’ll wake you up and test again.

Dwayne Semple 1:10:19
So he woke me up again at five o’clock at shift change, and I felt a little bit weird. I put my hand up over my head, and it would fall my left hand and and he said ‘That’s interesting, but still good. I’d kind of equal grips at that time.

Dwayne Semple 1:10:37
He said, Roz is still sleeping, but when she wakes up, I’ll probably send you home. So anyway, I did. I just fell asleep again. One of my colleagues came in to check on me, to ask if I needed anything else. And I he. He didn’t turn the light on. He just opened the door. So the light came in through the door, and I reached up to pull myself up in the cot, and I couldn’t move my left arm. And so of course, then he hit the emergency bell, and that’s where it all started.

Dwayne Semple 1:11:00
So I went down for my second CT, and they still didn’t see anything in the CT, and they didn’t get an MRI for another two days. Well, another, yeah, it was over 24 hours before I had the next before I got the MRI, and that’s when they found the where the stroke was. But they found the clock. Was it a clock? Yes, yeah, yeah. It wasn’t a bleed. It was a quad. However, I had had symptoms and and I’m going to forewarn anybody that may be listening to this or watching this, that if you have the slightest symptom that may seem like a stroke, for God’s sakes, go get checked.

Dwayne Semple 1:11:34
Because what happened to me on Thursday prior to that was we had taken our grandkids to the exhibition, I had left work early to go with them. And of course, following covid, this is a an agricultural exhibition. So they have, you know, farm animals and barns and that kind of stuff. So, so I went to go with them, and I went a bit later, and as I’m walking across the parking lot. I have this what, what now is dropped foot. But I have a I had my toe on my left foot kept dropping to the to the ground.

Dwayne Semple 1:12:09
Didn’t happen all the time. It was a couple of times during the steps in that walk for probably 150 meters, I went into one of the exhibits, and they were selling tickets on a handmade quilt or something. So I bought tickets, and when I went to write, and again, left handed, when I went to write my name, the pen felt funny in my hand, and I was a little bit, I was a little bit seven years old again, just for a few seconds.

Dwayne Semple 1:12:34
I had no idea. Now, I’ve been dealing with strokes 40 years right? I’ve seen the best and the worst in symptoms in people. And I know the symptoms off by heart. However, for myself, I was like, I never even gave it a second thought.

Dwayne Semple 1:12:51
But when I when I would, when I went down that night, when I had, when I had the actual, the actual stroke itself on the Saturday night, I knew damn well what it was, right? And that came back to me that two days before, and I’m like, Damn I wish I had done something about it. And I think that had a lot to do with why I didn’t get thrombolytics.

Dwayne Semple 1:13:10
They didn’t give me thrombolytics, and I told them upfront, you know, I had this and didn’t realize, and I’m not sure why I didn’t get, didn’t get, didn’t get the thrombolytics at the hospital, really, other than neuro wasn’t really willing to do it, knowing I had symptoms a couple of days before, because we still give TNK for heart attacks, even if they had symptoms two days before. Right? So, but maybe there’s something neuro.

Bill Gasiamis 1:13:42
Yeah, maybe neurologically, it’s a different risk, interesting. So what would you say was the hardest thing about stroke for you?

Dwayne Semple 1:14:04
Right now, playing with my small grandchildren is the hardest thing that I can’t do, not thinking about myself, thinking about them, but I, you know, I can’t crawl around on the floor and I can’t chase them. I’ve got a I’ve got a four I have a four year old granddaughter. I’ve got, we have eight grandkids. So they range in age from nine years, 10 years old to just around two months old, and all sizes, all sizes in that category. But the four year old, she comes here, I can’t keep up whether she exhausts me in an hour.

Dwayne Semple 1:14:40
Doesn’t but I think if I was healthy, hadn’t had the stroke, she’d still do that to me. But that’s the one thing that I’m real that’s really bothers me is the ability to play with these kids, because that’s what I did prior to right? I love playing with the grandkids and stuff. However, it doesn’t. It limits me. It doesn’t, but that, if you’re just say, what’s the one thing that bothers me the most?

Dwayne Semple 1:15:03
That’s the thing that’s on my mind, like, it’s kind of like I’m not the same, and I can’t do what the other grandparents and their parents can do with them and and for whatever reason, psychologically that I struggle with that, probably the knowing that potentially, very soon, I’m going to find it that I can’t go back to work and do my craft is going to be tough as well. But I’ve also come to the realization that my health is far more important than a stupid job, right?

Dwayne Semple 1:15:34
So, and I’ve, I’ve I’ve stuck all the needles and people, and put all the airways and people’s, you know, I’ve saved all the, all the lives that I think I needed to in order to make myself good and be right with the world. But I certainly, I certainly am going to miss that.

Bill Gasiamis 1:15:52
Fair enough. What has stroke taught you?

Dwayne Semple 1:15:57
Wow, In watching some of the other people that I’ve encountered in stroke units, throughout rehabilitation and and, you know, just in sitting in waiting rooms, I’ve learned so much. And I I’ve looked the big thing I’ve learned is that I’m probably one of the luckiest guys in the face of the earth with it, in the amount of friends and support that I have that poured out for me. But I’ve also learned that there are there are folks, and I think it’s probably due to the stroke that they struggle with, the ability to to navigate and be positive about it.

Dwayne Semple 1:16:42
They feel they’ve lost everything. And I had one gentleman that was in a ward I was in for a short period of time who was a big deal in his day. He was responsible for some pretty cool stuff, and I didn’t know that at the time, but he wouldn’t go to his appointments and things. And he was, you know, but the guy could get up and walk with a walker and wheel a wheelchair like crazy. But he his bout. His balance was his issue. He couldn’t, you know, he could use all his limbs and walk and talk and whatever, but balance was his issue.

Dwayne Semple 1:17:15
Now, we couldn’t climb stairs, or fast enough he needed to be able to climb 15 stairs to get to his apartment. And so they took him home to do that. And when he when he was exhausted, when he got to the top, of course, following the stroke and the fatigue, all the all the factors that factor in, he was like, they’re gonna have to put me in a home. And I was like, No, man, you don’t have to go to a home. So anyway, I found out about what he did, and I said, Wow, that’s amazing stuff. You need to tell me more about that.

Dwayne Semple 1:17:43
So I was trying to inspire him a little bit to to think about those days and think about who he actually is and and the fact that if he, you know, if he goes to his therapy, like classes and things, goes to the goes to his sessions, he’s going to get stronger. He’s going to be able to do it anyway. I had to go to my oldest son’s wedding in Ontario. I came back with covid, so they isolated me for 11 days, and I couldn’t get near this guy for 11 days, and when I did, he was gone. He had checked himself into another into another hospital, a medical unit waiting for placement in a nursing home.

Dwayne Semple 1:18:18
The guy’s 66 years old, like he’s young, and he should have been, you know, he’s got such great knowledge and and stuff. But anyway, you know, my education, in in what I how I feel. I think I always think everybody thinks the same way I do, right? And so I wasn’t affected, you know, by the stroke the same way, obviously, that he was. And so my ambitions, and I still have ambitions and goals and things.

Dwayne Semple 1:18:33
And I think he potentially felt that he couldn’t go any further and and that was a struggle for me that bothered me worse than anything, you know, watching some of the other, some of the other folks that that weren’t inspired to do anything.

Dwayne Semple 1:19:06
Lot, a lot of lessons, If I were to do anything over again, well, if I were to do it all over again, when I was in therapy, I had to work a hell of a lot harder. Not not that I didn’t while I was there, but I I I, I want more now, because I’ve gotten some I’ve gotten that, you know, I’ve gotten some distance, and I feel good, and I think if I had had worked harder, I would feel better. Potentially, that’s all wrong. That may be in my head, right? so.

Bill Gasiamis 1:19:45
Yeah, distance is important, though. You mentioned distance from the incident, as it does like time apparently heals all, all wounds. Distance does allow people to recover, come to terms with things, adapt, change, overcome. It does allow people to do that. And you can look back in 12 months, 18 months, 24 months, and things can change. I coach stroke survivors privately, and all the people I coach are on Zoom.

Bill Gasiamis 1:20:25
And what does a stroke recovery coach do? Not much. I just listen and tell them that we’re going to check back in six months, 12 months from now, and we’re going to see how far you’ve come. And my job is to remember where they were and to report back on how far they’ve come, because often stroke survivors don’t remember how bad they were, they remember, they focus on what they can’t do, and they get sort of stuck there.

Bill Gasiamis 1:20:53
And the two people who I spoke to yesterday, both of them were one of them was 18 months post stroke, and the other one was 12 months post stroke, and I hadn’t seen them because it’s up to the client to choose their next coaching session. So, I don’t force it upon them or anything like that.

Bill Gasiamis 1:21:18
They come when they’re ready, and the person who’s 18 months out had aphasia, and I had never had a conversation with them in the 12 months in the in the nearly 18 months that we’ve been discussing with his partner, stroke recovery and all that kind of stuff. And I had a discussion with him directly, and even though he was stuck with some words and some challenges about expressing himself, we actually had a conversation. And I had to remind him that you and I, my friend, I said to him, have never spoken before together.

Bill Gasiamis 1:21:59
It’s always been done on your behalf, and even then, we didn’t actually know what you were saying, that your wife was passing information on that she assumed you were saying. And I could say that that was totally frustrating for you, because it was she was never right, and I never knew exactly what what was happening a so he was like ‘Hmm, okay, you know, he took that as a as reality, as truth.

Dwayne Semple 1:22:28
Yes, yeah. And then it’s amazing.

Bill Gasiamis 1:22:31
Yeah, and then the lady I spoke to is 12 months out, and she’s worried about her memory and all that kind of stuff, and she was a completely different person this time after a couple of months of not seeing each other, and I said to you, have forgotten how far you’ve come, because we couldn’t have this type of free flowing conversation. You were far more anxious, concerned, all that kind of stuff.

Bill Gasiamis 1:22:54
And now you’re talking to me about she’s almost she’s 78 years old. I said, at 78 years old, you are looking for your next business deal, and you’re negotiating with clients, and you’re putting presentations together. You weren’t doing that six months ago. So it’s really difficult, I’m able to notice how far they’ve come, and they need to be reminded ‘that it’s great.

Dwayne Semple 1:23:22
I do too, I think that, you know, I my, my personality changed a bit. I was, I was using a lot of four letter words, F sharps in particular. I was injecting them between syllables, and I’m sure that, you know, that a lot of people do, and people on chemo will tell you the same thing, that word, or a similar word, will be the a word that they use a lot.

Dwayne Semple 1:23:52
I looked it up, and there’s I forget where I found it, I copied it and put it, I took a picture of it, and it’s in my phone, and it explains that that people who have, who have had strokes, head injuries, concussions, that are on certain medical treatments, there were a number of things, will use the most.

Dwayne Semple 1:24:16
They’ll use a profound a word of profanity to be their most explicit word. And whatever their most explicit word, it could be fuddled, It could be, you know, ice cream, but they will use that, and they’ll use it between syllables sometimes. And that’s certainly what I was doing. But the progress even in that, because I knew I was doing it and I couldn’t control it, and so I was trying harder to control it.

Dwayne Semple 1:24:43
The other thing I was trying to control was emotion. I my tears would turn on just in a second. I would get so emotional about stuff. I did it once while we were talking, actually, and I didn’t know where it came from, but I did it again today. I, and it’s, it doesn’t happen as frequent as it did, because, you know, my my niece would call, and I’d see your face and I’d tear up, but I’ve got really good control over that now.

Dwayne Semple 1:25:10
And so that was a small thing that I recognized that had changed about me. You know, I was always kind of a heart on the sleeve type of person anyway, but that’s that’s come, you know, back to to the place where it was before the other thing.

Bill Gasiamis 1:25:28
So there’s a term for that, that’s a Pseudobulbar affect.

Dwayne Semple 1:25:33
Okay, didn’t know that. Thank you.

Bill Gasiamis 1:25:34
Yeah, You need to look that up. Pseudobulbar affect, and is very common that people experience, some people experience uncontrollable laughing, and sometimes at inappropriate moments, instead of the crying and the emotion they get laughing. So I get that. I get the pseudobulbar affect response as well. And I’m 12 years post stroke, and I did a presentation on my book to a room of about 40 people recently when I launched my book and I cried.

Bill Gasiamis 1:25:46
I was supposed to speak for 20 minutes. I cried about four times during the presentation when I never expected that it was going to happen again, but I couldn’t rein it in. It just kept happening, and then I ran with it. I just kept going.

Dwayne Semple 1:26:25
Interesting theory on that. I must look at that, because folks with PTSD exactly the same thing, right? So I do peer referral work, or I did do peer referral work. I spent a number of years working with PTSD, mostly critical incident stress and that sort of thing, trying to get to it before it became PTSD, or here we call it, OSI – Operational Stress Injury and and, yeah, the tears come readily, and you know, people that are healed, who have who have come through, have come through on the other side who are talking about PTSD.

Dwayne Semple 1:27:03
They’ll openly burst into tears, and they’ll say, I’m okay. I’m okay, you know, I’m still a good policeman, I’m still a good firearm. And I just burst into tears, and I have no idea why. You know, don’t feel sorry for me. And so my son’s, my son’s a wedding I was talking about, it was just post stroke, about two months, and I had to get up and give a little speech.

Dwayne Semple 1:27:21
So my disclaimer I was, you know, that number one, I might throw the odd F sharp out, or maybe a whole lot of them. And then the other thing was that I might, I might burst into tears and, and please don’t feel bad about it. You know, they’re tears of joy at this point, but it’s just part of the stroke.

Bill Gasiamis 1:27:38
So my client, who I coach with aphasia, he could throw out an F sharp for every expression that he had. So I’m going to do it, and we can swear a little bit on this podcast, it was a ‘fucking fucking fucking fuck. I was like, wow, and every and he was so good at saying it, you actually had a sense of his emotion, what he was feeling, what he was trying to express. He was so good at changing the annunciation and the tone and the length and the sharpness of it that you could actually totally get, what, where he was coming from, even though you didn’t know the sentence.

Dwayne Semple 1:28:29
I’ve had patient I’ve had patients like that. And I remember an older gentleman one time we had taken into hospital, and nurse nurses were flabbergasted that that’s all this man could say. And this nurse kept saying to him, you can’t use this profanity here, you know. And he was ‘gibberish’ like he just kept at it. And he was, he was laughing at her, and that was, you know, he was making fun of that he knew damn well. He couldn’t get anything else out. That was all that was coming. And it was kind of, he was lashing it out just to see what she would do. Oh, yeah, you’re absolutely correct.

Dwayne Semple 1:29:00
I look back now. So I kept a file of photos and videos and things. So when I started going into physio, my wife would come in, the staff would allow her to video or take pictures or whatever she wanted, as long as they weren’t in them kind of things they didn’t want to be put on Facebook, and we never did, but I have a file of those photos of me, you know, in hospital, unable to move my left side from the time I got up and started walking.

Dwayne Semple 1:29:33
When I started walking with a parallel bars, when I went to a Hemi walker, when I went to a big cane, when I went to a smaller cane, when I went to a single cane, when I was walking on my own.

Dwayne Semple 1:29:45
I have videos of me the day that I decided that we were going to get on that trike and give it a try. I have the tears of elation when I rode the first kilometer on it like I was so elated that I could do it like you. I. I don’t know if you hit any of those milestones, but I hit a number of them and and I’m so proud of that, but I’ve it’s certainly been an interesting journey.

Dwayne Semple 1:30:12
And when I realized that this was the journey I was taking, and I didn’t have to worry about, you know, work and other people at this time, I just had to worry about me, I made it about me, although, like I said, I can’t take, I can’t take other people out of my, out of my, my script sort of thing. So when I see somebody that’s struggling, or whatever, I’m, unfortunately for me, I’m a helper, and I feel like I need to get my nose into it and help them out. Yeah, and I don’t know if that’s a it certainly helped me along. Let me tell you that it’s right, helps it’s made me purpose.

Bill Gasiamis 1:30:48
Yeah, it helps me, mate, let me tell you that I found my purpose doing the podcast and writing a book about “The Unexpected way that a stroke became the best thing that happened. You know, because there is so much positive feedback coming back my way. My YouTube channel is full of positive feedback for what the episode that the particular person listened to has done for them, or how it has helped them. My email inbox get I get 2-3-4 emails a week, people telling me about what a fantastic job I’m doing for them.

Bill Gasiamis 1:31:24
And it’s like, wow, I this is a selfish pursuit, I started it for me. I didn’t start it for them, but I’m but it’s such a what an amazing benefit, you know, to have a selfish pursuit that gives so much and helping is one of the key ingredients to post traumatic growth. So there, my book is a basically a book about post traumatic growth that I didn’t know the term when I wrote the book, so I didn’t put that information in there.

Bill Gasiamis 1:31:56
But since I’ve presented on the book a couple of times and spoken about it and looked into the research of post traumatic growth, one of the key essential ingredients is doing something for somebody else, volunteering or helping other people. And a lot of stroke survivors who I’ve interviewed will say that they immediately found a way to help other people, and if they haven’t done it yet, they’re saying, I want to help other people.

Dwayne Semple 1:32:23
So I had Rec. therapy, Recreation Therapy, they didn’t know I was in the facility until two weeks before I left, and they’d been there eight weeks. I play a drum, a Celtic drum called the Bodhran, and so it’s just a single drum that you hold and. Hold on one second

Bill Gasiamis 1:32:43
We’re good.

Dwayne Semple 1:32:48
There we go. No, it was somebody calling me on, not on Zoom, but on another medium there, anyway. So they found out about this drum, and there was a guy upstairs had played one. So he brought it down. We tried to harness it to me and tried to figure out how we could play. It wasn’t working out so well. So he said, Okay, you need to get a hold of the Tetra Society.

Dwayne Semple 1:33:10
And the Tetra Society is a group of engineers and and volunteers that come together and and they they build adjunctive equipment for people so that they can do the things they love to do, you know, when they have a disability. So in my case, you know, they would build me an adjunct so that I could put pressure on the back of the goat skin to change the tone of the drum. And I was like, okay, so they filled out the form, sent it to the Tetra Society.

Dwayne Semple 1:33:34
So the guy from Tetra called and wanted to talk about it. So he said, So what do you know? What do you like to do? And I said, Well, I take her with bicycles. You know, I’m a bike mechanic, and I do this sort of, Oh, really. Well, we have a client who’s this, would you be interested in helping us out? So now I’m a member of the Tetris society. I help them out with a couple of things.

Dwayne Semple 1:33:54
Actually, I’m helping a gentleman who’s got a very rare disease build a flying shuttle for his loom so that he can weave. And currently, and it’s been a long process, but anyway, they still haven’t helped me with the damn drum, but I’ve been building bicycles and come up with inventions and ideas help them out. So I’m hoping that someday that I can go back to playing my drum again. But that is one of the things it does. It gives me pleasure, right to help out.

Bill Gasiamis 1:34:25
Why not? As we wrap up, the last question I’d like to ask you is, there’s people listening, the on our journey, the have a similar path or a different path after stroke, what would you like to tell those people?

Dwayne Semple 1:34:40
I think the best thing is to stay positive regardless. And I’m not sure how you do that. I’ve done that, but I found something every damn day to get up for and be thankful for. You know, express your gratitude, find the people that find the people that feel your best. Basket. So you were talking about the fact that you were filling your own basket, trying to fill your own basket, and have filled other people’s basket. So that’s a movement that started, I think it was in the US.

Dwayne Semple 1:35:11
There’s a kids book that was written. It’s called, have you filled a basket today? And I suggest every adult read that. But it’s all about, you know, by you sharing and doing good things for other people, your basket will get filled automatically. Don’t let the basket stealers, the people taking stuff out of your basket, ruin your day. You need to be you need to be positive, and you need to look for those little things, and you have to set some goals for yourself.

Dwayne Semple 1:35:37
I don’t mean things that are unattainable, like, you know, I am going to go win the million dollars in the lottery. You’re not going to do that. But tomorrow, I’m going to walk a little further than I walk today, I’m going to walk a few steps without my cane. I’m going to, you know, I’m going to, so you want to soar just a little bit higher.

Dwayne Semple 1:35:57
You just want to take, you know, step up one more rung, or take one more stare. You know, you need to. You need to do that in order to progress. You know, to feel fulfilled. John Wooden was a UCLA basketball coach, and he was one of the most amazing coaches, and one of the most, one of the one of the coaches that I follow. So one of the one of my, one of my things was I taught leadership. And I love leadership because there’s so many different things, and not every, not every great leader has all the things it takes.

Dwayne Semple 1:36:35
I followed John Wooden because one of the things he would do is take the basketball players out into the forest, and he’d get them to find a tree, and he’d say, Okay, you’re ready to climb a tree, and I want you to go as high as you can. Some people go up, you know, 2 branches, some would go right to the top, as far as they could go. And he’d say, Okay, what I want you to do is, I want you to go one more. Just take one more branch, just go one more, and then you can come right down.

Dwayne Semple 1:36:58
And they all did. And why did he do that? He just wanted them to step out of their comfort zone. So if you step out of your comfort zone, if it’s only one step or one inch every day, that’ll make a huge difference. That’ll make a huge difference. And that’s what’s kept me going, and I you know, I preached this stuff for a long time, and I did it. I tricked myself into doing all the right things. Had, did I have some down times? kind of, but I always tried to stay positive, because I always had something to look forward to, right? I had, as I said, I got eight grandkids now.

Dwayne Semple 1:37:34
I two of them have come along since the stroke, but so I had six at that point, but I had, you know, I had them to look forward to seeing all the time. And all I wanted to do was get out of the hospital and get some hugs and things and and I still feel like I’ve got some, I’ve got some good left in me to try and help. And I want to feel, as I said before, I want to feel productive. So, yep, moving forward, what you need to do is you need to, you know, stay positive and and take that one extra step every day.

Bill Gasiamis 1:38:10
And on that note, thank you so much for joining me on the podcast.

Dwayne Semple 1:38:15
Thanks for having me. It’s pleasure.

Bill Gasiamis 1:38:17
Well, that brings us to the end of another episode, I hope Dwayne’s story of recovery and the exploration of treatments like etanercept through the expertise of Dr. Tobinick provided you with hope and valuable insight. His determination to adapt and thrive despite the challenges of his stroke is truly inspiring. Thank you to everyone who has left a review. It helps others find the show, and it gives much needed encouragement to stroke survivors.

Bill Gasiamis 1:38:47
If you haven’t already, please consider leaving a five star rating and sharing your thoughts on iTunes and Spotify for those watching on YouTube, remember to like, comment and subscribe to stay updated on future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:39:10
Your support helps us continue to bring these important stories and maintain the podcasts production. Every contribution, no matter the size, goes a long way in allowing me to share stories like Dwayne’s and reach stroke survivors who need the encouragement.

Intro 1:39:27
And if you’re a stroke survivor or know someone with a story to share, I’d love to hear from you. My interviews are unscripted and casual, so just come as you are. Lastly, if you have a product or a service related to stroke recovery, consider sponsoring an episode, visit recoveryafterstroke.com/contact, to get in touch. Thanks for joining me today, and I can’t wait to see you in the next episode.

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