When you hear Lorenzo Price’s voice, you might not immediately realize how much he’s endured. A talented tattoo artist and musician with a deep love for family, Lorenzo had his life turned upside down by something he didn’t even know was inside his head — an arteriovenous malformation (AVM) in his brain.

His AVM ruptured. But not before years of misdiagnosis, disbelief, and emotional trauma.

Lorenzo’s symptoms didn’t start overnight. He’d been struggling with episodes of vision loss, migraines, and intense fatigue. Each time, doctors would send him home. Sometimes with nothing more than a pat on the back and a suggestion to drink more water. Other times, with medications that made things worse.

And then came the stroke. A major one.

By the time they found the AVM — hidden deep within his brain — the damage was done. He’d lost much of his vision. His ability to work was gone. And his home, relationship, and sense of self-worth began to unravel.

What makes Lorenzo’s story so powerful is that he kept going. When everything in his world fell apart, he leaned into his faith and started looking inward. That’s where the recovery truly began.

He underwent radiation therapy to shrink the AVM, knowing it might take years to fully work. Along the way, he battled seizures, financial collapse, and the emotional grief of not being able to do what he loved — tattooing and visual art.

But his creative spark didn’t fade. It just found a new outlet.

Despite left homonymous hemianopsia (a type of vision loss), Lorenzo began reclaiming parts of his life. Music became his therapy. Storytelling became his service. And showing up for his daughter became his mission.

Lorenzo reminds us that stroke recovery isn’t linear. It’s a deeply emotional and spiritual journey, especially when you’re recovering from something as misunderstood and complex as a brain AVM.

He still lives with limitations but he’s not defined by them.

This conversation isn’t just for those recovering from AVM. It’s for anyone who has felt dismissed by the medical system… who’s been told “its all in your head”… who’s lost more than they thought they could handle and still managed to keep going.

You’ll hear Lorenzo speak openly about:

• Losing his vision — and what that taught him about seeing life differently
  
• Rebuilding from rock bottom — emotionally, financially, and spiritually
  
• What radiation therapy for AVM is really like
  
• Why having faith (in any form) helped him find a new path
  
• The power of being heard, and why he’s now telling his story to help others
  

If you’re looking for hope, clarity, and connection, especially during a hard stretch of your stroke recovery, this episode will speak to you.

From musician to stroke survivor, Lorenzo Price shares his powerful AVM of the brain recovery story and how he rebuilt life after loss.

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The man who saved my life

Highlights:

00:00 Lorenzo Price’s Introduction and Background
03:15 Transition to Tattooing and Music
08:03 Health Issues and Initial Diagnosis
15:36 Medical Journey and Diagnosis Confirmation
20:18 Finding Relief in Diagnosis and Facing Relationship Loss
32:36 Impact on Personal and Professional Life
40:32 Lorenzo’s Extreme Acceptance: Choosing Strength After Stroke
52:45 Faith and Community Support
57:56 Challenges and Coping Mechanisms
59:11 Future Plans and Aspirations
59:37 Advice for Stroke Survivors
1:00:25 Conclusion and Final Thoughts

Transcript:

Bill Gasiamis 0:00
Welcome everyone before we dive into today’s powerful conversation, I want to thank you for being a part of this incredible Recovery After Stroke Community. Your support, whether it’s by sharing the podcast, leaving a review or simply tuning in each week, makes a huge difference. Together, we’re creating a space where stroke survivors, caregivers and allies can feel seen, heard and supported. Since 2015 I’ve been personally covering all the costs of producing the podcast to make sure stroke survivors and their loved ones can access helpful and free recovery resources.

Bill Gasiamis 0:36
And last year, I opened up the doors for those who want to support the show through Patreon. If you found value in these episodes and you want to support what I do, head to patreon.com/recoveryafterstroke. Also a quick reminder about my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, it is available on Amazon. It’s become a helpful guide for many stroke survivors and families, especially during the harder parts of recovery.

Bill Gasiamis 1:07
You can find it by searching my name, Bill Gasiamis or going to recoveryafterstroke.com/book. Now, I’m really excited to introduce today’s guest, Lorenzo Price. Lorenzo is a musician, a former tattoo artist and a stroke survivor whose story is as raw as it is inspiring. After an AVM rupture caused vision loss and delayed diagnosis, he’s been rebuilding his life through faith community and resilience.

Bill Gasiamis 1:37
In this conversation, Lorenzo opens up about navigating tough emotions, adapting to new challenges, and holding on to creativity and hope even when things got dark. Let’s jump in. Lorenzo Price, welcome to the podcast.

Lorenzo Price 1:53
Thank you very much for having me.

Bill Gasiamis 1:55
My pleasure. Thank you for being here. I wanted to get a bit of a sense of what life was like before stroke. Tell me about Lorenzo, what he got up to, how he went about life before stroke.

Lorenzo Price 2:09
Yes, before my stroke, I was a body piercer and a tattoo artist and a musician full time, that’s what I did. So I heavily relied on my vision and my sense is that way I worked downtown in Cartersville, where I live, for a really great tattoo shop. Things were going awesome, things were going really well, and then boom, all of a sudden, I woke up. There’s really, like, no kind of lead up to it. It just sort of happened.

Bill Gasiamis 2:41
Wow. How old were you?

Lorenzo Price 2:44
I’m 34 when it happened, I was 34, I’m 36 now.

Bill Gasiamis 2:49
So that’s a pretty unique combination of things to be employed in or to be doing. So how did that all fit into your daily life? Tattoo artist, piercer, which I imagine happens at the same place, roughly at the same time of day, and then musician were tell me about like, how one of your days would unfold, or one of your weeks.

Lorenzo Price 3:15
Well, mostly I’d go check into the tattoo piercing shop, you know, around 11, and I’d be there until eight o’clock at night most days. Um, on my off times on if I didn’t have anything to do on the weekend, I would be on a gig playing music. I actually did that for a lot longer than I did the tattooing and piercing. I was a musician for the majority of my life. The tattooing and piercing thing came later after COVID.

Bill Gasiamis 3:44
What kind of instrument do you play?

Lorenzo Price 3:49
I play guitar and piano and bass and drums.

Bill Gasiamis 3:57
Fair enough. You’re a little prolific when it comes to music, by the sound of it.

Lorenzo Price 4:01
I love it.

Bill Gasiamis 4:04
So your tattoo work? Did you find that you were very skillful in being a tattoo artist, out of the blue. How did you come into that? Why did you move into that part of the role?

Lorenzo Price 4:23
I was always an artist my whole life. Since I was a little kid I was into drawing. And when COVID happened and I moved up, back up here to Georgia I’m from Fort Myers, Florida, where I was gigging most of the time, I happen to know some people, and he needs somebody to help, and I just happened to be that help, I started piercing. After a while, I needed a tattoo, and I asked him for one. When he asked me for the image that I want to tattoo, I gave him an image, and it was a drawing of mine.

Lorenzo Price 5:03
And he asked me, he said “Who drew this?” I said “Oh, I did.” And he was like “Wait a second” like, you know he’s known me sometimes, like 13. He’s like “You’ve been able to draw this whole time?” And I was like, yeah. He said “Why need a new tattoo artist?” He’s like “Would you like to apprentice for that?” And so I did, and it came pretty naturally, pretty easy. It was great. I really, really loved doing it. Loved piercing, loved working on tattoos. Loved music, too.

Bill Gasiamis 5:38
What’s it like going from a paper drawing, and then using the ink and the tattoo gun to put the image on a skin. How do you transition to that? Is it easy?

Lorenzo Price 5:51
It was pretty easy, honestly, but you know it was easy because I guess I came from a musical background, so I knew how to practice. So I would practice, like, 10 hours a day, every day, until I just got it down. But when it’s on, on regular skin, it’s just a matter of having to stretch the skin versus a piece of paper that’s always static.

Bill Gasiamis 6:18
Are there people who you’ve tattooed to have a not so good tattoo, that had to be a guinea pig.

Lorenzo Price 6:26
Yes, most of that, most of that is me. My legs are totally covered in Guinea Pig tattoos, and a couple of friends my mom included.

Bill Gasiamis 6:38
Wow, that’s a lot of trust in somebody who isn’t expert at tattooing it.

Lorenzo Price 6:44
Yeah, exactly.

Bill Gasiamis 6:46
Fair enough. Tell me a little bit about that transition from working as a two tattoo artist a musician on the daily like, what happened when you finish your eight hour shift and then go and play a gig.

Lorenzo Price 7:02
Yeah. So it would, it was a mixture of things, I also taught music. So sometimes I would teach early in the day, so I could, you know, I might be teaching in the morning, and then do my piercing stuff or tattooing stuff in the afternoon, or an afternoon gig, and then go to a late night gig. So my days were very full. For most of my life, I just kind of woke up and got going right away and didn’t stop until I didn’t have any gas left.

Bill Gasiamis 7:31
Well, you are properly busy, man. What kind of genre of music did you guys play?

Lorenzo Price 7:37
Honestly? Like, I know you probably hear this a lot, but all genres, I love jazz and funk and rock and blues, and I love it all. I went to the Atlanta Institute of Music. I studied music there and got my Associates there, and I just learned to love all styles and music.

Bill Gasiamis 8:00
So was it a band that you filed?

Lorenzo Price 8:03
Some of them were I had a bunch of different bands. Majority of them were covered bands. That’s where the money was. I had a family to take care of this. So, but yeah, a lot of the couple of the bands are mine. Then I would join a lot of other people’s bands and just be like, utility guy for them.

Bill Gasiamis 8:26
Hence why it was really good to have that ability to play multiple instruments.

Lorenzo Price 8:33
Yes, and like, have a knowledge for the different genres and like, how they work together.

Bill Gasiamis 8:38
Yeah, fantastic, man. Can you describe the moment when you started to realize there was something wrong with your health?

Lorenzo Price 8:49
Yeah, I can.

Bill Gasiamis 8:50
Lorenzo story is a reminder that resilience doesn’t mean being fearless. It means moving forward, even when it’s hard. Let’s take a quick pause, and if you’ve been finding value in these kinds of conversations, here’s how you can help keep them going. The podcast exists to create a space for stroke survivors and their families to feel heard, encouraged and uplifted.

Bill Gasiamis 9:16
If it’s been helpful to you, consider supporting it through Patreon, you’ll be joining a group of people who believe in the power of lived experience and recovery. You can learn more at patreon.com/recoveryafterstroke. Now, let’s get back to Lorenzo as he shares more about rebuilding identity, leaning into faith and finding new purpose after stroke.

Lorenzo Price 9:41
So in 2000 it actually the moment I realized there was something wrong with me was in 2015 which was years before my hemorrhage happened. I was on a cruise line shift with my family, and I went to go dancing, and the next thing I know, I woke up with the nurses and paramedics that were on the shift line, like they told me they know what happened, that I just, like, kind of freaked out.

Lorenzo Price 10:22
And they had no explanation for it, but they said that they had, they had given me a shot to put me to sleep becausethey couldn’t, didn’t understand what was happening.

Lorenzo Price 10:32
My family didn’t either, needed to die like I don’t even remember this incident, but I just remember waking up and having no idea how I got where I was or what had happened, or where my family was, or anything. And then they just told me what happened. They told me that the night prior, I came knocking on my dad’s room, and he said that he thought that I had a nervous breakdown, so that was screaming and yelling and like, totally like that. He couldn’t understand what I was saying.

Lorenzo Price 11:11
And that’s when they called the people, and they gave me a shot and put me to sleep that night. But after that, when we got back home, I started having these really weird waves, I guess I would call them. That was happening on my right side of my face, waves on it was like, I don’t know how to describe it. It kind of like the way it culture would feel, but more internal, and it would it sort of like pulse this right side of my temple, and then it would vibrate, and then have this wave that would go down my whole body.

Lorenzo Price 11:55
And that kind of got worse and worse over years and years and years when I got to the neurologist here in Georgia, it was at Kaiser Permanente. They gave me an MRI and a CT and but, you know, not just like a regular CT and MRI no contrast or anything, no angiogram, and they just said that there was nothing wrong with me. And so that turned into them sending me to a psychiatrist because they thought I had psychological issues, that this was all something I was making up in my mind. But I knew it, and I went to the doctors over and over and over again.

Lorenzo Price 12:39
I went to what doctors in Cape Coral, doctors in Woodstock, Georgia. I went to doctors in Kennesaw in Atlanta. And time and time and time again, I was turned away. Like they would always say basically the same thing to me, we can give you something for your anxiety, but like, there’s nothing wrong with you, they would say. But I could feel it. I knew that there was something wrong with me, like and I kept requesting a neurologist over and over and over again, and they kept sending me to different doctors. You know, first it was the psychiatrist.

Lorenzo Price 13:21
Then the psychiatrist sent me to the neck and spine specialist. The neck and spine specialist sent me back to the psychiatrist who saw me have an episode in her office, and she got me hooked up with the neurologist. And that was in September of September of 2021, I saw a neurologist finally. So it took like six years from the to get me to one. That was like taking me seriously. His name was Doctor Pearlstein, and he told me if there’s that he believed there was something that had some kind of mass in my head that I was having.

Lorenzo Price 14:07
He saw the videos and saw me having episodes, and said that I was having seizures. And that’s somebody my age with no history. Shouldn’t be that we need that. We need to go get these tests run at Emory in Atlanta. But shortly after finally seeing him and getting these tests set up for me, unfortunately, my wife at the time, she with me at the doctor, and found out, and kind of just threw me out of my home and canceled my bank account and canceled my health insurance so I couldn’t go back to the doctor.

Lorenzo Price 14:51
And like, it was madness, and, you know, I tried to go back afterwards, but didn’t have an insurance that. More so like they wouldn’t take me. But yeah, so it was kind of a really exhausting situation. Right before I had my hemorrhage, I finally got set up for all the scans that was supposed to get set up for my family was going to pay for it. My mom was and it was just like, too late that point, dude.

Bill Gasiamis 15:36
Okay, let’s unpack this a little bit. You know there’s something wrong, you’re feeling it. You’re experiencing it, they tell you to go and see a psychiatrist. What is it like to be at a psychiatrist when you know there is something wrong physically in your body, and they’re trying to do the psychiatric thing? What is that like? That experience like, what the hell happens in a consultation of that nature, when you are certain that there’s something wrong with you and they’re telling you, it’s all imagined.

Lorenzo Price 16:20
You know, it feels like the ultimate dismissal, like, just like I’m being betrayed by the doctor and medical system. That’s what it felt like, because I knew it like, I knew it so hard, like, and I can never quite explained what I was feeling to people or what was happening, but like, they always boiled it down to that I was anxious, and I would tell them again and again, I saw four or five different psychiatrists that kept getting the arguments with them, you know, and I would tell them the same thing, like, there’s something wrong with me, like I need to see a neurologist.

Lorenzo Price 17:01
And again, I guess maybe my demeanor, because I was getting upset, maybe they agreed with them. I’m not sure why, but it was the most frustrating experience of my life and and it led you know it never the answers never got solved, until catastrophe happened. And actually spoke to my vascular neurologist recently about this, because he wanted me to do a testimony at Sea Time Memorial Hospital, who I’ve heard, one of the people on your podcast, I think he was getting her what happened? He had, like, a steroid issue or something, and gave him a stroke.

Lorenzo Price 17:41
Yes, I believe he so it says same hospital and Dr. Thomas Devlin up there is incredible, because after years and years and years and years and emergency room visit after doctor visit of different doctors like I can’t even explain to you how many doctors I saw to try to figure out what was wrong with me. He literally just did what you’re doing right now. He just listened to me. I told him what was going on, how it happened, and he said, you’re 34 years old.

Lorenzo Price 18:15
And he said “Don’t lie to me.” He said “Do you do drugs?” I said “Dr. Devlin, on my children, I do not, I’ve never done any drugs” I said “Except for marijuana.” And he said, marijuana didn’t do this to you. He said, a 34-year-old with no history of drug use or any head trauma, anything. He said, there has to be. He said “You have an AVM.” He said, that’s what you have, and you need to get an arteriogram done. Has anybody given you an arteriogram ever?

Lorenzo Price 18:48
I said “No” and he said, that’s what you need. He said “Because I’m telling you, that’s what you have.” And they gave me an arteriogram and that’s what I have.

Bill Gasiamis 18:58
Wow, man.

Lorenzo Price 18:59
Like, he was like Dr. House, the way he just, like, listened and like, just put the puzzle together. And just told me, before anybody ran another test on me, just told me exactly what it was he knew.

Bill Gasiamis 19:14
Perfect episode of Dr. House.

Lorenzo Price 19:16
Amazing, yeah.

Bill Gasiamis 19:19
Come in, weird guy presenting with all this stuff. Everyone thinks he’s crazy. I know. Let’s just ask some strange questions. Yep, it’s definitely that solve the problem. 30 minutes, we’re done, go home. Everyone’s happy.

Lorenzo Price 19:32
Yeah, it was wild. Dr. Thomas Devlin, like, he saved my life. I love him. Like, yeah, I couldn’t believe that. Like, he just put it together that quickly after, like, all of these years and all like, you wouldn’t believe the losses that have come from this.

Bill Gasiamis 19:49
So when you got the result, when Dr. Devlin kind of said what he said, and then it was confirmed. Was that a blow to you, or was it a relief? Or some kind of.

Lorenzo Price 20:01
It was the absolute biggest relief of my life. It was the biggest relief of my life because I have lost my family and friends and my home and everything over nobody believing me.

Bill Gasiamis 20:18
But you’ve got a serious health issue, your life is at risk. You’ve got a blood vessel in your brain that could burst any time. And you reckon that was a relief getting that news. That’s insane.

Lorenzo Price 20:30
It was a relief. It was an absolute relief, kind of like you always say it a stroke. I was one of the best things that’s ever happened to you, right? Like knowing like this happening to me, and knowing that I wasn’t contained, that there really was something wrong, and that they were able to find it like it was, it just felt like the weight of the world came off my shoulders.

Bill Gasiamis 20:54
That would have been heavy, and that whole other people not believing you would be what I just imagined myself going through would be crippling, like not being able to convince somebody that you’re completely right would be crippling your emotionally, mentally, and it will be impacting negatively on you physically, and it wouldn’t be helping the AVM. It would be making matters worse in your brain as well, right?

Bill Gasiamis 21:23
So absolutely, what if you can, if you’re happy to talk about and comfortable talk about it, what was the catalyst that meant that your relationship with your wife ended? How did that come about? Was this stuff before stroke that was sort of still bubbling away that led it to end, or was it something else?

Lorenzo Price 21:45
It was, ever since that first seizure I explained to you in 2015 we just sort of had a steady but slow decline from there, like she just didn’t, she wouldn’t believe me, and I couldn’t trust her anymore. I couldn’t trust somebody who couldn’t believe me like, I was her husband, and just that’s coming together. And when she told me to leave my home, I was just absolutely wrecked like I couldn’t. I just couldn’t take it anymore. I couldn’t take like this is how far nobody trusted me.

Lorenzo Price 22:29
Nobody would give me the benefit of the doubt. Even my wife at that time, my family members, some of them you know me and my dad, have had a tough time because of it, you know, my little brother’s the best, and but it’s caused a lot of tension. Yeah, it sounds like.

Bill Gasiamis 22:53
Now, it sounds like a betrayal of something. Can you pinpoint the betrayal. What it was that you felt isn’t even the right word betrayal. Is it something else? How would you describe that situation? Because I have deficits that are not visible, which sounds like you might have two. That means that people don’t know that I’ve had a stroke. They don’t know how serious my condition is, and they’re not betraying my relationship with them, their trust, their belief in me and my story, what I’m saying, but they can’t connect the dots. You know, stroke doesn’t look normal.

Bill Gasiamis 23:36
You look normal, bro. I kind of have this feeling of forever, feeling the real word is misunderstood, but it goes a bit deeper to your core, like it feels like I’m also, you know, not believed, even though that’s not really true. So how was it for you? Was it betrayal? Was there another word that you would describe that kind of breakdown in those relationships?

Lorenzo Price 24:05
You know, for me, honestly, betrayal feels like the only right word, because, like I’ve done, I’m not a Turkish person. Nobody is, but I’ve done my best to be the best that I can to everybody in my life, my whole life. So when these things started happening to me, and when Doctor Pearlstein finally said “Yeah, you’re having seizures.” I think there’s something in your mind, in your brain, and still, nobody believed me.

Lorenzo Price 24:35
I just felt like I deserve the benefit of the doubt, like I’ve been good, like I haven’t harmed anyone, and nothing I’m doing is harming anybody. Like, why won’t any my family believe me? My own dad wouldn’t believe me, my own wife wouldn’t believe me that there was something wrong. They both thought that I was losing my mind, that I was that had some sort of serious psychiatric condition going on, yeah, man, to me, it betrayal seems like the only right word.

Bill Gasiamis 25:11
Yeah. I’m sorry that you had to go through that, honestly am. I feel like it should have never have happened. But I think it stems from ignorance more than anything else, and people’s inability to grasp a concept that they can’t see. I mean, it’s almost like being an atheist. You can kind of understand why an atheist is an atheist?

Bill Gasiamis 25:42
Well, you telling me about God and all those kind of things, but I can’t see, touch it, feel it, whatever, and therefore I choose not to believe in a being that I can’t touch, see or feel, that is supposedly controlling my life and making my life better or making somebody else’s life worse or whatever.

Bill Gasiamis 25:59
Like you kind of get the atheist discussion, and this kind of feels like similar they can’t touch, feel, see, they just see you. They judging you, on your behavior, on your attitude, on your frustration, on the way that you’re interacting with them. And they’re making a call, and they’re feeling like, perhaps you’re deceiving them, and they’re going, This dude’s being deceitful, and he’s doing all that kind of stuff, when at the same time, you’re feeling that you can see how quickly and easily a wedge can be brought between two people.

Lorenzo Price 26:39
Absolutely like it was, it impressed me, and I was living it like I feel like I couldn’t believe it, like I was people my family are calling me to drug addicts. All of a sudden, you’re on drugs. I know you’re on drugs, and I’m not, and it, yeah, it is ignorant. You’re absolutely right about that.

Bill Gasiamis 27:08
And then you’ve received a diagnosis. Does what’s the next step? So what happens after that? Now you know what the what’s going on, the medical intervention starts to kick in. What happens after the diagnosis?

Lorenzo Price 27:22
So after the diagnosis, which was a year after my hemorrhage, after that, Dr. Devlin set me up to go and meet a guy named Dr. Cleary at Erlanger. He’s a radiation oncologist, and they performed an SRS on the AVM itself to try to SRS, a cyber knife radiation treatment, basically, like a targeted X rays, like super high dose X rays. I think I’m not exactly, I’m not 100% sure, but it’s something along the lines of that, yeah.

Bill Gasiamis 27:57
It’s laser, it’s a laser radiation therapy that’s designed to change the DNA of the AVM to kind of make it like dissolve or dissipate or stop working and disappear.

Lorenzo Price 28:13
That’s the whole idea, that was in last August. So it’s been almost a year since I had the SRS done.

Bill Gasiamis 28:27
And then what happened? How did that continue to evolve?

Lorenzo Price 28:34
So since then, things have, actually have kind of gotten a little better. You know, my doctor, Dr. Devlin, put together a great team of doctors for me. So I’ve got a great epilepsy Doctor who takes care of my seizures, to my seizures of like, I’ve had one now since May. So, I’m like, that’s a long time for me. Like I’ve had a seizure at least May. So is it May? June, July, August. So, yeah, like 10 months now, because I’ve had a seizure, and I feel like I’ve been doing great since then. Yeah, I’m still in physical therapy for my legs that fallen a couple of times.

Lorenzo Price 29:22
And I still do some speech therapy for, like, the way that I read out loud, I read out loud kind of funny. There’s like, some kind of weird connection there, I feel like I can hold, like, a fair conversation, but kind of a little bit of an issue reading things out loud. They told me back in that, but it’s just been your follow up, follow up scans, follow up with the doctor, and it’s just been kind of that, like every three months or so. So I see Dr. Devlin, and then I see Dr. Gaski, who actually did the arteriogram on me, who’s also an incredible man and doctor.

Lorenzo Price 30:12
He explained it to me the best way that I think anybody could have, because he came to me after my arteriogram with a giant iPad to show me what the AVM looks like. And he said, you have an AVM in your brain. And I just told him, so you got to go tell my mom. You got to let her know like she’s downstairs worried that he said I saw her hours ago, but then we started talking about it. And I said, so what, you know, what is this thing? He explained how it’s a congenital malformation, something you’re born with.

Lorenzo Price 30:50
And I was like “No” I told him. I was like, you know, I exercise like I eat fairly well. I don’t understand. And he said “Lorenzo, no matter where you were, no matter what you were doing at that moment in time, this is always going to happen to you, had you not had some intervention prior.” And like, I don’t know that made me feel better. For some reason.

Bill Gasiamis 31:15
It’s a small consolation because you weren’t responsible for causing it. I like that, that’s a good thing, man. I mean, I was partly responsible for making the environment around my AVM worse. So I smoked, I drank, I worked too many hours, you know, it’s just stress head, all sorts of things, and I kind of created the perfect storm for it to pop, you know, or to bleed, or whatever. But the reality is that an AVM, for a lot of people, and often, this is what’s weird. They can occur anywhere in your body.

Bill Gasiamis 31:54
They don’t just occur in the head. But I’ve never come across, or heard of anyone having had an AVM that bled in a different part of the body, skin, muscles. You know it’s possible for them to occur anywhere so and most of the time they’re benign. They just sit back, chill out, do nothing. Most people who have them won’t know they have them unless they play up, and they tend to play up at middle age between, say, 35 and 45 the amount of people who I’ve interviewed whose AVM has played up somewhere around the age of 40 it’s ridiculous.

Bill Gasiamis 32:36
It’s a pattern that continues to evolve. And then there are a few people who have met whose AVM caused problems way earlier than that. So it’s a small consolation prize, when somebody says you didn’t do this to yourself. It would have happened anyway. It’s random.

Lorenzo Price 32:59
Yeah, you know, it like all the bad news felt like good news, yeah.

Bill Gasiamis 33:04
To me, everything’s upside down and all over the place. So what was life like after stroke? So before stroke, everything’s busy. Jobs, you know, morning to the end of the day, gigs, tattooing, piercing, the works.

Lorenzo Price 33:23
Yep. I’ve been with my children.

Bill Gasiamis 33:25
Yeah, your children, your wife. And then the contrast begins with the relationship breakdown. How did your interaction with your kids change?

Lorenzo Price 33:42
Changed immensely. I’m not as capable as I was like, so I can’t drive to go and pick them up like I used to be able to. There’s a lot of things that I’m being held back on that, unfortunately I’m not getting help. On the other side, like they’re their mother told them that I don’t have seizures, that I am not partially blind, and then they believe that, they believe that, that was the reason why I wasn’t coming to see them.

Bill Gasiamis 34:21
Okay, I hate it when they do that to kids. Such a terrible thing to split kids from their parents in any way. Like, it’s ridiculous.

Lorenzo Price 34:35
It’s horrible, like, it’s absolutely horrible. They don’t, children don’t deserve that.

Bill Gasiamis 34:40
No.

Lorenzo Price 34:41
I’ve done my best to like, remedy as much of that as I can. And when I have them like we I basically play like, speech therapy games with them and brain games with them to keep them occupied and have fun. So like and I try to teach them how to use, so I gotta walk with a walking stick, almost I can’t really see, I have this thing, it’s called left, this is big. It’s called left homonymous hemianopsia is what it’s called from the damage to my right occipital parietal lobe region.

Lorenzo Price 35:20
So, all the information that’s coming into my eyes, you know, left doesn’t keep you like, so it’s like there’s nothing. It’s not black. It’s just like there’s nothing there and it’s really strange. But I’ve just kind of, when I have them now I give them their own little sticks. So here, use the stick. Come walk with me, and I try to make it fun so, like, I don’t want this to be like a tragedy to them.

Lorenzo Price 35:46
I try to make it so, like, hey, let’s learn something, you know, that I’ve talked to them all about seizures. I’ve taught them all about blindness, I taught them all about strokes. And I try to keep them, you know, as informed as possible, but not scared.

Bill Gasiamis 36:01
I like that. Yeah, that’s cool, man, and work situation is totally different than what it was before.

Lorenzo Price 36:08
Now, yeah, I used to work 18 – 20 hours a day. Now, I’m at home. I’m disabled, like, can’t drive, I can’t do, I can’t really do it anymore. The vision deficit is the absolute worst of it. It just makes things incredibly challenging. Like even centering myself on this panel was difficult, like, it’s that with the seizures, and it’s just, it’s been a lot.

Bill Gasiamis 36:45
Yeah, is your vision blurry? How is it other than the area, other than that part that’s missing that you don’t have anymore, the areas that you do have? What’s that vision like?

Lorenzo Price 36:57
It’s blurry, like, I’ve got some lenses that help a little bit, but not great. I’m supposed to get prisms soon. Prism lenses soon, from a neuro optometrist up in Chattanooga, so I’ll be doing that soon, and they think that might help some of that. I’m not really sure how they work, yeah, but it’s might help some of this left stuff, but the center, even what I can see is still blurry. It’s not sharp. It’s kind of like you’re like, I can see, like, the silhouette of your face right now. Like no like, no details.

Bill Gasiamis 37:42
I’m a good looking guy, mate.

Lorenzo Price 37:44
I’m sure.

Bill Gasiamis 37:48
You wouldn’t know if I wasn’t, but I am, I really am.

Lorenzo Price 37:52
I believe you. Yeah, I’ve got my eyes are blurry because not only do they have this brain damage in the occipital region, and my optic nerves from the intrathenial pressure got squeezed, yeah, and then this eye hemorrhaged also. So I had a hemorrhage in my right eye, and my optic nerves got damage, and then sorted my lobes back here. So just, but it’s like you said, it’s kind of I carry myself in a way that, like nobody really knows, unless I tell them, yeah.

Bill Gasiamis 38:33
I just love that about you. I love that about you, but it doesn’t sound like you’re doing the I’m holding it all in and not talking about a thing which is different. You know, some people don’t share, don’t say so that they appear normal, or whatever that means, you know, to people, so that no one knows. Whereas you’re kind of like, I’m just going to go about doing things the way I need to do things to get things done, and then if the situation necessitates it.

Bill Gasiamis 39:03
Well then I’ll elaborate on what’s going on for me, why I carry a cane, and why I’m struggling with my vision or something. I love that approach. It’s kind of just getting on with business, by the sound of it.

Lorenzo Price 39:15
Yes, thank you. That’s exactly what it is. Like my mom always tells me, like, what else are you going to do? You got to do it.

Bill Gasiamis 39:22
I mean, that’s so true. There’s nothing else you can do, I did. But did you ever have this is not happening moment? What were the internal battles like? How did you comprehend what was happening to you? And then you know what you had to deal with, the sudden changes of all the things that you had to deal with.

Lorenzo Price 39:49
So, I don’t know if this is healthy or not, but I have just you. I almost immediately accepted it like it was, like I had this moment where this nurse woke me up from the coma in the hospital. Her name was Chloe. I went back and met her so and she woke me up in the hospital and told me that I had been in a coma and where I was, and I just had like, this immediate thought in my head and like, instead of, like, panic, or like, oh my god, like, what is like, what’s happening?

Lorenzo Price 40:32
I just had this moment of clarity, like, wow, I’ve wasted a lot of time in my life being upset, you know, being mad. I just like I and ever since I that moment, ever since I came home, I’ve just maintained this, like it’s all good. I accept this and I can, I can do this. And I think that a lot of people don’t have that kind of mindset.

Bill Gasiamis 41:02
Extreme acceptance.

Lorenzo Price 41:04
Yeah, I guess it’s extreme, but it’s, I just also know that it could crush me if I let it. And it seems there’s really only two options, I either let this thing like crush me, or I do the best I can, to be as good as I can with my life the way it is now.

Bill Gasiamis 41:25
I love that man, extreme acceptance is probably my word. I don’t know if it’s totally your word and 100% appropriate, but you said you’re not sure if it’s healthy or not. I mean, it’s properly healthy to accept something and then move on with it and find solutions to problems, then focus on problems without looking for the solutions, you know.

Lorenzo Price 41:51
Yeah, and that’s, yeah, you’re absolutely right. I just don’t feel like there’s time to dwell on the things that can make me sad I can’t do anything about that, because I can do, I could do right now. I can reach out to you and ask you about your podcast. I can take an Uber to see a friend, you know, I can. I can hang out with my kids on Friday night and Saturday and like, and I just look forward to those things instead of pushing it all in which I think a lot of people are afraid that I’m doing, but I’m not like, I honestly don’t feel depressed or upset or anxious or sad.

Lorenzo Price 42:34
If I get in the mood where I do feel like, you know, this kind of sucks, I’ll sit down and I’ll write something like a journal entry with all on my phone or my iPad, or I’ll write some music and, just kind of channel it that way. But I don’t like, I don’t know. I just don’t want to. I got to be a really good example for my children.

Bill Gasiamis 42:59
I love that.

Lorenzo Price 43:00
I don’t want them to look at their dad and see, you know, this disabled guy who can’t do anything, who’s let this beat him. I want them to see me and have an example for themselves. So when they grow up, if something ever does happen to them or someone they love, like they know there’s like, they could do better, and I’m going to keep doing better because of it.

Bill Gasiamis 43:19
I love it. I love it, that’s meaning as well. Like I always thought about the kids, and how do I go about presenting the after a serious you know, medical issue occurs, how do you present that to them so that they can touch wood in their time when they come across some difficulties with health or whatever that they’ve got an example to model or to lean on or to use as one way to go about it, when they’ve if they saw the other version the one, they’re losing my shit, where I can’t cope with everything, and when I haven’t come to terms with what I’m dealing with, it’s like, you know, why?

Bill Gasiamis 44:10
Why show them that version of it? Not that I didn’t have bad days, tough times and intermittent issues. I did, I let them play out, and then I moved on from them, so they saw me cry, get frustrated, angry, mad, all of those things. But then they saw me bounce back, overcome, and then transform it into a podcast, into a book, into all those things. And it’s like, it’s amazing what you’ve done. Yeah, it’s very different than just sort of sitting back and letting it take over my entire life. It does live with me every day like it’s the gift that keeps on giving.

Bill Gasiamis 44:48
For sure, you know, numbness, wake up in the middle of the night, balance issues, checking, you know whether my foot’s on the ground, muscle tightness never. Feeling comfortable in my body, you know, on the left side and all that type of thing, needing constant massages, needing therapy and all sorts of things. But I kind of also did that well. This is what I’ve got to deal with. I’ve got to find a way to live with it, adjust, modify the way I go about life and and just sort of this is going to sound weird, like, appreciate the opportunity to view life from a completely different perspective and lens.

Lorenzo Price 45:36
Absolutely.

Bill Gasiamis 45:37
You know, I don’t know if that’s hard for people to hear. Some stroke survivors may not resonate with that, and I get it totally cool, but it’s like, I don’t know it’s offered. It’s more depth if I can’t give it a better word, a different, more amazing word, unless offered more depth in how I viewed life, or how I experience life, I don’t know if some people are not comfortable about it.

Lorenzo Price 46:09
I feel, yeah, I do like things taste better, things smell better. I’ve had this I talked to Doctor Michael David. He’s the guy who actually did my craniotomy and literally saved my life that day. But he and I talk a lot. I see him often, and I’ve got this thing that we talked about where, like, I have this get to attitude a lot, even when I know I gotta go and kill my legs in therapy, like I don’t have to do it, like I get to do it and like that.

Lorenzo Price 46:45
That kind of perspective helps me a lot, because I might have, like, for a whole day ahead of me, that’s just a nightmare. Like I get to do this instead of having to, and it makes it makes my outlook a little bit better. Get to just think of things that way, like I don’t have to do anything, like I get to do it all.

Bill Gasiamis 47:07
That’s pretty cool. How old are the kids now?

Lorenzo Price 47:11
They’re 5 and 8.

Bill Gasiamis 47:13
They’re very little.

Lorenzo Price 47:15
They’re very little, yeah, so when this happened, they were 2, almost 3 and 5.

Bill Gasiamis 47:24
Yeah, right. Well, that’s really cool that you can still have them in your life, and they can be part of your, you know, Fridays and Saturdays and whatever comes later, because that will evolve and emerge as well, and that might pick up and improve, and they’re kind of lucky to have you around, but also lucky to have this version of you, which is so curious about how to go about this new way of life, and you’re discovering things that you never knew before. You’ve let go of a lot of things, though.

Bill Gasiamis 48:01
So what is it like? How did you go about, kind of getting your head around, having to let go of tattooing and to let go of the other things that you were doing that were important and interesting?

Lorenzo Price 48:15
Those things took a little bit longer for sure. You know, I was in love with my job. I was, I loved what I did. So having to get used to not doing that again, it felt like I lost the whole part of my identity. Like, just like strips from me. I don’t know if that makes any sense, like, yeah, that was like me, like I was the tattoo artist, piercing musician. That was who, that’s who I was professionally, like, coming waking up from a coma, and, you know, my apartment’s gone, my job’s gone, and, like, just like, now I’m living at home again and all that’s behind me.

Lorenzo Price 49:00
It just was a struggle, that was a struggle for a while, to like, accept the fact, like, I’m not gonna be able to do this anymore, I can’t tattoo. I can’t see enough to tattoo. And it’s just like it killed me a little bit on the inside. It really did, because drawing is what I’ve always done since I’m a little little kid, and not being able to draw it just, it just took a huge part of me away. But I’ve channeled that into writing. You know, I always like to write, so now, since I can’t draw like I just, I try to write a lot.

Bill Gasiamis 49:42
And that’s been really helpful. What do you like to write about? At the moment.

Lorenzo Price 49:47
I’ve been writing all about my experiences. I’ve been posting them on my Facebook for like, the last like eight months or so. So they’re just, you know, just stories or or freestyle poetry. Just audio, just all about this whole thing, all about my stroke and strokes in general, and what it was like to be in a coma, you know, and types of questions people ask me. It’s all about that stuff.

Bill Gasiamis 50:13
Do you see this body of work getting compiled in some way, shape or form in the future, becoming a book.

Lorenzo Price 50:20
I think it could, I think maybe it could be one day. You’re not the first person to ask me. I think that, with some help organizing it, maybe it could be, yeah, I think the materials good. I think that it’s, I just try to, you know, I’m not good at, like, A A B B, rhyme, this or rhyme that.

Bill Gasiamis 50:52
Your bitter life never happened.

Lorenzo Price 50:55
Yes, like, I just kind of, like, write it like a letter.

Bill Gasiamis 50:58
Almost, I hear you, but not to anybody. Yeah, it could be a memoir to yourself. You know, the days that you wrote individual stories or feelings or expressions, that could be fine, too. There’s no such thing as the perfect format book, you know, like, I think it’s more interesting and more raw to have a blow by blow, day by day, kind of linear experience of what somebody who’s going through, what you’re going through, might have experienced.

Bill Gasiamis 51:32
You know, or had happened to them, and the thoughts and the things you overcome, and all that, Like it could work really well. Yeah, I was just curious about that.

Lorenzo Price 51:45
I’ve definitely been considering it, because I’ve been asked multiple times. I just got to organize it all, I guess, and get to get to an editor, I don’t know, like I can write, and I have my friends like “Hey, check this out. Will you help me edit it?” I’ll have them help me that way. But yeah, like, I think getting it into a book format could be really, hopefully, maybe inspiring for people. It would be, at least for my kids one day.

Bill Gasiamis 52:14
Absolutely, man, yeah, I would love that. I would love to see that that happened or that it didn’t happen. It doesn’t matter, but it’s a great idea to sort of contemplate and think about, because if you’re writing and you’re putting it somewhere like online, there’s no reason why you can’t transfer that onto paper and just bind it and turn it into something with a little bit of support help, a little bit of tweaking, you know, a little bit of refining whatever it is. There’ll be plenty of people that might be able to advise you on that and support you with that, just when the time comes.

Lorenzo Price 52:45
Yeah, I’m sure, yeah. I’m really fortunate with like, the support that I have, like the people that are around me are all my mom, my brother, my sister, my dad, everybody, even my neurosurgeon, yeah, formed a really great relationship with him. He, you know, like you spoke earlier, I believe about your sort of comparing, an atheist, yeah, before the stroke happened, I was the total atheist. I was like I didn’t believe in God. I didn’t see any room for it at all. And then this brilliant Catholic Surgeon named Dr. David McCaleb, like, saved my life.

Lorenzo Price 53:40
Like, and then offered me some room in his, like, get to know him, and a way to play some music, because he plays music. So, like, now I can go to his house and he’ll hop on the piano, and I can play some music with him, and he was really, really helped me. And after getting to know him and I made a decision one day, I went to his office, and I’ve just went there to thank him. I asked my mom to drive me up there, like, can we? I want to thank Doctor Michael? And I said, Doctor McCaleb, thank you.

Lorenzo Price 54:16
Like you saved my life. I feel like the luckiest man on the face of the earth, like there couldn’t possibly be anybody luckier than me. And he said to me, he said, Lorenzo, he said you weren’t just lucky that you’re that this worked out. He said you were lucky to have me as your surgeon, he said, because most other surgeons would have let you go, because I had to fight for you, with you. I guess the higher ups you keep me on. I guess the medication is very expensive. I guess it’s expensive to keep somebody in like Him.

Lorenzo Price 54:59
So, and he told me, and he said, by the way, he said “There’s no such thing as luck.” I said “What do you mean?” He said, well, he said, when he was younger, as a surgeon, that a nurse told him that there was no such thing as luck, that there was only God’s grace and God’s mercy. And that just resonated with me so heavy. And like, I went from like this non-believing atheist to Doctor McCaleb. Would you confirm me?

Lorenzo Price 55:25
So like this man saved my life twice. He took me to the Catholic Church, and I went to the RCIA, basically, like an adult catholicisms, and he’s my sponsor for it. And it was, it’s just cool. It’s really cool. He’s been an amazing person to have gained in my life. So I might have lost some people, like I’ve gained some really great people.

Bill Gasiamis 56:09
Now you definitely have. And when people go through an existential crisis, often times they go one way or another. They find God, religion, whatever, or they move away from it. And it doesn’t really matter which way you go or why you go that way. What I love is that what you found is some what’s the words, something positive out of it, some strength, you know, some deeper meaning. And that’s what’s really good about it. That’s, you know that’s useful and helpful in recovery and helping somebody get through.

Bill Gasiamis 56:44
You know, the idea of faith, wherever that comes from, is like a faith in a surgeon who’s going to open up your head, faith in a hospital system, faith that everything will be okay, faith, even if you don’t associate it and attach it back to God. Faith in God, it’s a really powerful thing to experience, to be able to fully have faith in something working out, even if you can’t see the way forward, even if you can’t understand how it’s going to be okay, you have to start with faith.

Bill Gasiamis 57:19
If you don’t have faith in something well, then the path forward is going to be a lot harder to unfold and see and develop and walk and walk, you know.

Lorenzo Price 57:31
Absolutely it’s honestly coming into the church, bringing this into my life, has been a wonderful experience too. Like I never thought that I could embrace it the way I had, like, it’s been great for me. And there’s a stroke support group at the church too that I attend.

Bill Gasiamis 57:54
Bonus.

Lorenzo Price 57:56
And, you know, they’re all very nice people, you know, varying ages, found my age all the way up till, it’s my grandparent’s ages, all different stories. And it’s been really nice for me. It’s been making me feel better, like I said, I don’t. I’ve been letting this thing beat me up. Not gonna let it beat me. And I haven’t been letting it.

Bill Gasiamis 58:20
Yeah, what was the hardest? Was it physically, emotionally? Was it mental? What was the hardest part for you do you feel?

Lorenzo Price 58:30
The vision is still and what was the hardest part, especially in the beginning, for like, the first year in this right eye over here, there was a big black spot in it from the retina hemorrhage that happened, and noticing it was way worse than it is now, like, now, I can’t tell you where I’m missing, the spot I know just from knowing, but like it feels normal for me, but where, when I first came home from the hospital.

Lorenzo Price 59:11
And for like, that first year, probably like it was just black on this side, just a big black, like a broken Television. And having to adjust my vision, and getting used to not being able to see, like, that’s still the worst part, but it’s, you know, it could be 10 times worse than it is. So, like, it’s not that bad.

Bill Gasiamis 59:37
I love that you’re such a positive guy. Like, everything is half glass full, but there would have been dark moments, a couple of dark moments. One, maybe, was there any dark moments, and how did you get through them?

Lorenzo Price 59:50
I think that this is why I say I’m not sure if it’s healthy or not, because I just haven’t had that moment for, it’s good. I haven’t had that moment where I broke down, like, and I don’t know if I’m going to, I don’t like, I know that like people around me, like my dad or like my friends. Like “Are you okay?” Yeah, totally fine, you know. And like, I honestly feel like that’s the truth. Like, I don’t know, I don’t think I’m gonna break down and I haven’t.

Bill Gasiamis 1:00:25
And beautiful man, I love that. It’s the true answer as well. You know, you come across people “How you doing?” and they always say “I’m good, I’m fine.” And they’re not really. That’s just their default response, if you’re truly good and fine, and that’s the answer, that’s brilliant. I love that. That is, why not? I mean, it’s a skill to teach people and to master. And if I could model that version of a stroke survivors mindset, like bottle that and then just hand it out in droves, and people just took that and then that’s what they had. I mean, wow, you’ve been through so much, and it’s still like that.

Bill Gasiamis 1:01:06
It is the ultimate stoic philosophy in practice. I’m not sure if you know much about the Stoics, but it’s like, what’s good about this? Or what can I learn from this? Or how can I evolve from this? It’s always your questions always seem to be about how to transform whatever it is that you’ve experienced into something more meaningful. Something just popped into my head. Tell me what you think about this idea.

Bill Gasiamis 1:01:33
You know how tattoos are a trend, and all these kind of different styles and all these things are a trend, and you see them happen. What if you become the first visually impaired tattoo artist, and you get some brave souls to allow you to tattoo them visually impaired?

Lorenzo Price 1:01:49
It might not be a bad idea. There might be a market out there for that.

Bill Gasiamis 1:01:55
I reckon there is. I’ve often come across artists, people who draw, etc, and one of the things that kind of, you know breaks my heart a little bit is when they say I can’t paint draw anymore because of my vision or my hand. And I’m like, dude, like you should be painting and drawing with the skills that you have, the way that your brain artistically works, which is the the that doesn’t go away in this new version of yourself, with this new way that you see the world and express the world.

Bill Gasiamis 1:02:37
I figured that what that would do is kind of give a deeper insight and create a unique perspective into things that visually, quote, unquote, normal people can’t see or comprehend. Do you know what I mean? And it doesn’t matter what you that it doesn’t look traditional or whatever. It just matters that what you’re doing is still applying your technical knowledge in this new visual way because of the way that you’ve been impacted.

Bill Gasiamis 1:03:14
And I often reflect back on one of the most famous female artists, Frida Kahlo from Mexico, who started painting when she became injured and expressed her challenges and all that kind of stuff in the most unique way. And as a result of that, her work has become renowned across the world for 100 years. I don’t know. I just feel like that’s something that people should explore, people who have previously been, quote, unquote, normal and now visually impaired or physically impaired. I think that should be something that people explore. What do you reckon of that idea?

Lorenzo Price 1:04:00
You know what if I can get some people who want me to do it, I’ll do it. I’ll give it a shot, you know, like, why not?

Bill Gasiamis 1:04:09
Yeah, even if it’s not tattooing. But I think that would be a cool story to share that first, you know, visually impaired tattoo artist has their first client or victim, or whatever you want to call them. And then if you did art. I mean, you can imagine how simple it would be to transfer that onto a canvas, for example, and have that as part of the entire journey you know, your life, where you came from, where you ended up, and how you transformed that from being a disability to an ability and one of the most.

Bill Gasiamis 1:04:59
Best examples for that is a young girl who I interviewed on the podcast who had a stroke when she was a very little child, and her parents have supported her to find a way to raise some money. And her name is Clara. Clara Woods. I interviewed her mum and her stepdad and the entire family, they’re crazy. She had a perinatal stroke, and that was episode 265, and let me tell you, she has like 200,000 subscribers or followers on Instagram or socials or whatever. And she’s a teenager now. She’s probably just turned 18, something like that.

Bill Gasiamis 1:05:59
And she paints man. She paints the most unbelievable. I would call it abstract work. And she sells canvases because she has become known as the young stroke survivor who has developed she’s non verbal, and she has some, I think, physical deficits as well, the way her muscles work, etc, make it a little bit difficult for her to get around. She’s had a lot of therapy and stuff, but she expresses herself in really vibrant colors. There’s a lot of hearts in her art. She does little canvases.

Bill Gasiamis 1:06:40
She does massive ones, and it’s just been a real joy to follow this story about how they’re, they have the whole family has the same attitude as you, and they’ve just come together, and they’re just running with everything that they possibly can to not miss out, to not miss out on anything, and not to kind of step back and be kind of one of the many people who are not seen after they have such a thing happen to them.

Bill Gasiamis 1:07:07
I know I just get really passionate about hearing people saying, I can’t paint anymore. I can’t express myself anymore because this thing happened to me. I don’t know if that’s real. I don’t know if it’s true.

Lorenzo Price 1:07:20
You know that’s I like, I like that. Maybe it’s not true.

Bill Gasiamis 1:07:25
Yeah, I think I might send you that link, just so you can have a bit of a look at it. It’s just, it’s heartwarming, and it’s great to see this person express themselves, and it’s great to see that they’re turning it into a career, or making a few bucks out of it and helping cover the costs, because the costs are pretty huge, you know, as you know, and it’s something different. I’d like to throw that out there and just challenge people to think about.

Lorenzo Price 1:07:59
Yeah, please send me the link.

Bill Gasiamis 1:08:01
Yeah, I will. I’ll send it to you. I’ll also put it on the show notes. So anyone who’s interested in having a look at Clara’s story, they can have a they can have a bit of a look and get inspired by her and her family. They’re just the most amazing. Never Say Die, never quit, kind of people, and we need more examples of that.

Lorenzo Price 1:08:22
People gotta have that attitude. Like, I think that a majority of my whole recovery has been like, just having positivity and like being positive about it.

Bill Gasiamis 1:08:34
I reckon if I was near you and I wasn’t in Australia, like 12,000 miles away or something like that, I don’t know how far away we are, I reckon I might be. Might have been your first tattoo client after stroke, because I’ve never had a tattoo before, and what a perfect way that would have been to.

Lorenzo Price 1:08:55
Well, then I guess I’m going to have to come while we out there, and we’ll test it out on you.

Bill Gasiamis 1:08:59
Absolutely, man, come and do it. What we’ll do is to make it safe so you don’t cover my entire arm. What we do is, like, would create, like, a perimeter out of, like, some kind of a thing, right, where you could just start drawing and whatever comes out of it, comes out of it. I think it’d be the best way to do it. I’m totally into it. And then you can feel your way around that perimeter. You know where the edges are. So you could, you could maybe create in your mind and in your eyes, you know, some kind of thing that starts with the perimeter. You start on the outside and you work your way in.

Bill Gasiamis 1:09:34
I don’t know what like I’m just running with it. I don’t even know if it’s appropriate, but.

Lorenzo Price 1:09:39
These are already good ideas.

Bill Gasiamis 1:09:40
Good, good. Well, I hope so, man, I just, I don’t know. I get passionate about it, you could tell, and I could over-talk about it, so I’ll just move on now.

Lorenzo Price 1:09:51
I think it’s great. I don’t have any issue hearing about it.

Bill Gasiamis 1:09:54
Yeah, good. I’m glad. I just wanted to ask you, so there’s a lot of people listening now, who are being in your situation, my situation, our situation, they might be early on in the process. They’re looking for a little bit of wisdom. They’ve definitely picked up on heaps of it through the podcast. But is this something that you specifically would like to share with the people watching and listening?

Lorenzo Price 1:10:19
Yeah, no matter what, no matter what is, you’ve survived this thing, like this, like, life is so good post stroke. You might, might have had a miserable experience prior to stroke, and think that things are going to be worse after but like, you’ve survived it and you’ve lived it, and you should focus on that, because that’s what I did, like, the gratuity of just being alive and keeping that attitude, no matter what’s come my way, no matter what I’ve had a bad seizure and ended up in hospital again.

Lorenzo Price 1:10:56
No matter if I’ve fallen or whatever’s happened to me, I just keep up no matter what. I think everybody who goes through things like this needs to keep that attitude, even if it’s hard, like, I know it’s difficult, it’s been not like, it’s just been easy for me to do. It’s been a challenge. But I’ve made sure that I’ve maintained that no matter what, like, I can do this, and so can they.

Bill Gasiamis 1:11:22
Yeah, that’s great advice, man. I really appreciate you reaching out to be on the podcast. It is fantastic meeting you and getting to hear your story and to learn from you. I really appreciate the you’re telling me what I needed to hear about the way that we should approach recovery, or that’s beneficial to approach recovery. It’s just been an absolute pleasure, man. Thank you so much.

Lorenzo Price 1:11:53
Thank you so much. It’s been a pleasure for me as well. I really appreciate it.

Bill Gasiamis 1:11:57
And that wraps up today’s episode with Lorenzo Price from surviving an AVM rupture to coping with vision loss, delayed diagnosis and redefining his path forward. Lorenzo story is a powerful reminder that healing is possible and that creativity, faith and community can be anchors during recovery. If this episode resonated with you, I’d love to hear your thoughts. Leave a comment, like and subscribe on YouTube, and if you’re listening on Spotify or Apple podcasts.

Bill Gasiamis 1:12:28
A five star rating or review really helps more stroke survivors find the show. Remember my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is now available. Just search my name on Amazon or head to recoveryafterstroke.com/book. Thanks again for being here. I’ll catch you in the next episode.

Intro 1:12:50
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:13:20
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:13:45
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The post A Tattoo Artist’s Life Turned Upside Down by AVM – Lorenzo’s Stroke Survival Story appeared first on Recovery After Stroke.

When we think about stroke, many of us imagine the classic signs — facial droop, arm weakness, slurred speech. But what happens when a stroke strikes deep in the brain, with no clear warning signs? And what if the cause isn’t in the brain at all, but in the heart?

In this post, we’ll explore the connection between thalamic ischemic stroke and PFO (Patent Foramen Ovale), a heart condition that can quietly go undetected until something major, like a stroke, occurs. If you’re a stroke survivor seeking clarity or a caregiver trying to understand the medical puzzle, this guide is for you.

A thalamic ischemic stroke happens when blood flow to the thalamus, a small but critical structure in the center of the brain, is blocked by a clot.

The thalamus acts like a relay station, processing and transmitting information between different areas of the brain and body. It plays a vital role in:

• Consciousness
  
• Sensory perception
  
• Sleep regulation
  
• Motor control
  
• Emotional processing
  

Damage to the thalamus can affect everything from sensation and balance to memory, alertness, and even emotional stability. Symptoms vary depending on the affected region, but may include:

• Confusion or sudden unconsciousness
  
• Numbness or tingling
  
• Fatigue
  
• Difficulty with coordination
  
• Changes in speech or language
  
• Visual disturbances
  

Because it doesn’t always show up with the classic FAST signs, a thalamic stroke is more prone to misdiagnosis or delayed detection, especially in younger individuals.

A Patent Foramen Ovale (PFO) is a small flap-like hole between the left and right upper chambers of the heart. It’s part of fetal circulation and is supposed to close after birth. However, in about 25% of adults, it remains open, usually without causing any symptoms.

So why does it matter?

In rare cases, a PFO allows a blood clot to bypass the lungs (where it would normally be filtered out) and travel directly to the brain. This can result in a cryptogenic stroke, a stroke with no obvious cause.

When a stroke occurs deep in the brain and the usual risk factors (like high blood pressure or atherosclerosis) don’t apply, especially in younger stroke survivors, doctors may start investigating heart-related causes. A PFO is one such possibility.

Here’s how it might connect:

• A small clot forms in the body, often in the veins.
  
• Instead of being filtered out by the lungs, it passes through the PFO into the arterial system.
  
• The clot travels to the brain and blocks blood flow, possibly to the thalamus, causing an ischemic stroke.
  

This pathway is called a paradoxical embolism, and it’s increasingly recognized as a contributor to stroke in people under 55, particularly those without traditional risk factors.

If you’ve experienced an ischemic stroke, especially at a young age and without clear risk factors, your medical team may recommend a test like a bubble echocardiogram to check for a PFO.

If a PFO is found, treatment options include:

• Antiplatelet or anticoagulant medication (like aspirin or blood thinners)
  
• PFO closure, a minimally invasive heart procedure that uses a catheter to implant a small device that seals the hole
  

While not all PFOs require closure, in cases where it’s likely the cause of stroke, closing the PFO can significantly reduce the risk of recurrence.

Whether your stroke was linked to a PFO or not, the emotional journey after a stroke is just as significant as the physical recovery. Many survivors of thalamic ischemic stroke — even those with no visible impairments — report:

• Fatigue
  
• Cognitive fog
  
• Emotional overwhelm
  
• Survivor’s guilt
  

These are real and valid experiences. Healing from stroke isn’t linear — it’s a process that involves community, compassion, and ongoing learning.

If you’re navigating life after stroke, know this: your story matters, and your recovery is worth fighting for — no matter how “invisible” your symptoms may feel. Many survivors live with unseen challenges that are just as impactful as physical deficits.

Explore more stories of stroke recovery on the Recovery After Stroke podcast, or grab my book The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book for tools, hope, and community support.

And if you suspect your stroke may have been caused by a PFO or are still searching for answers, speak to your doctor and ask about further testing. The more we understand the root causes, the better we can recover and prevent another.

Her stroke was missed for 12 days. Fatty, guilt, advocacy, and a powerful return to purpose followed. A must-hear for stroke survivors.

Get On Board Australia
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Highlights:

00:00 Introduction and Acknowledgements
03:07 Lisa’s Stroke Experience
05:43 Diagnosis and Initial Reactions
21:33 Discovering the PFO
29:14 Joining the Stroke Foundation Board
35:19 Survivor’s Guilt and Stroke Recovery: Lisa’s Honest Reflection
43:25 Accepting the New Normal
54:51 The Hardest Thing About The Stroke
55:47 The Lessons From The Stroke
1:04:00 Advice to Other Stroke Survivors

Transcript:

Bill Gasiamis 0:00
Welcome everyone before we dive into today’s powerful conversation, I just wanted to thank you for being a part of this incredible community. Your support, whether it’s sharing the podcast, leaving a review or simply tuning in each week, makes a massive difference.

Bill Gasiamis 0:15
Together, we’re creating a space where stroke survivors, caregivers and allies can feel seen, heard and supported, as you may have heard in recent episodes, since 2015 I’ve been personally covering all the costs of producing the recovery aftershock podcast to make sure these conversations remain free for those who need them, late last year, I opened up the opportunity for those who found value in the podcast to support it on Patreon.

Bill Gasiamis 0:43
You can learn more by going to patreon.com/recoveryafterstroke, a heartfelt thank you to everyone who’s already supported the podcast, and a special shout out to my most recent supporters, David and Luke, your generosity helps make this work possible, and if supporting financially isn’t something you can do right now, just listening to the podcast and not skipping the ads goes a long way.

Bill Gasiamis 1:11
Every little bit of engagement helps keep this going, and I’m incredibly grateful. Before we begin, a quick reminder about my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It has helped hundreds of survivors and their families around the world find meaning and hope after stroke, you can grab your copy at recoveryafterstroke.com/book, or on Amazon by searching my name Bill Gasiamis.

Bill Gasiamis 1:37
Now I’m really excited to introduce today’s guest, Lisa cook. Lisa experienced a thalamic ischemic stroke at just 30 while attending a work conference interstate. Despite collapsing and losing consciousness, her stroke went undiagnosed for 12 days, initially mistaken for a seizure. It wasn’t until a follow up MRI back home in Adelaide that the truth came to light. In this episode, Lisa shares what it was like to have a stroke with no classic symptoms, how it led to the discovery of a hole in her heart and the emotional impact of surviving when others don’t.

Bill Gasiamis 2:16
Including survivor’s guilt, extreme fatigue and the invisible symptoms that still linger. She also talks about how this experience eventually led her to the board of the Stroke Foundation, bringing her governance expertise and lived experience to improve stroke advocacy and support. Lisa’s story is a profound example of post stroke purpose and resilience. Let’s jump in. Lisa Cook, welcome to the podcast.

Lisa Cook 2:44
Thank you so much, Phil. I’m really excited to be here.

Bill Gasiamis 2:48
Same here I was. It was really lovely to meet you at the Stroke Foundation event that we were both at a few weeks ago. One of the things that I have done recently is re engage with the Australian Stroke Foundation, with the Australian stroke survivors.

Lisa’s Thalamic Ischemic Stroke Experience

Bill Gasiamis 3:07
It’s not that I was disengaged, but it’s that with the podcast, things have taken off, and my biggest audience is in the United States, which is nothing I expected. So it’s really good to meet people locally, and when, when I met you, I thought, well, this is a story I need to learn about. So can you start by telling us a little bit about what happened to you?

Lisa Cook 3:35
So we’ll go back to 2015 so it’s coming up to a 10-year anniversary having my stroke, and it was really a day like mainly any other day. But that night I was I was actually in Sydney, so I live in Adelaide, but was up in Sydney attending a conference and attending a big, sort of gala dinner that was on for that conference that night. It was fine, things normal, you know, didn’t drink much, didn’t do anything out of the ordinary.

Lisa Cook 4:15
By the time we got back to the hotel room, I started to feel really dizzy, which for me, is actually not that out of the ordinary to have that happen. So normally I just lay down, and it kind of passes, and everything’s fine, but this time when I laid down, I proceeded to fall unconscious, and was then unconscious probably for about an hour or so so, passed out in the hotel room, woke up in St Vincent’s Hospital in Sydney, not knowing, obviously, what had happened.

Bill Gasiamis 4:56
How were you found?

Lisa Cook 4:58
Well, my husband was with me. Me. So he was the one that had to experience all of that really, you know, fear for the worst. He was trying to get me to wake up, and I wasn’t. So that’s never a good feeling. And he was the one who called triple zero for the ambulance to come, but couldn’t quite work it out, so ended up getting the hotel security and a whole bunch of people in the room, apparently, trying to help out and and sort of fix me up, get me well, or get me somewhere where I could get better.

Bill Gasiamis 5:38
What type of stroke did you have? And do they know what the underlying cause was?

Lisa Cook 5:43
Yeah. So I had a clot in my Thalamus, so I believe is that an ischemic stroke, yeah, in my Thalamus, which is a part that’s right in the middle of your brain. And unsurprisingly, because of the symptoms I had, it’s the part that controls consciousness and things like that. So that was the part of the brain where it happened, the underlying cause. So as many of your listeners might be aware, if they themselves are young and have had a stroke, which is crazy in itself, because I always thought of strokes as like an old person thing, right?

Lisa Cook 6:32
Like a lot of us probably did, and then we get thrust into this world where it’s like no actually, anyone at any age can have a stroke, and a lot of people that I talked to had the same underlying issue as I did, and that was a PFO so patent foramen ovale, which is a hole in your heart that serves a really great purpose when you’re in utero.

Lisa Cook 6:59
But once you’re born, should really close over and not cause any issues. But mine had not. Many others I’ve spoken to have had the same scenario where really the first sign that you get that you have this heart problem, a congenital heart defect, is that you have something major, like a stroke.

Bill Gasiamis 7:20
Yeah. So then you’re in hospital, you discover that you had a stroke. Somehow, they worked it out, I imagine, relatively quickly.

Lisa Cook 7:32
No.

Bill Gasiamis 7:33
Oh, no. What happened?

Lisa Cook 7:34
They didn’t. Because my symptoms, what I presented with, were not our classic fast signs or FAS signs. They sort of, I guess, take the sort of, what is the most obvious answer that could be happening here? And of course, they do a CT scan to check if there’s anything major going on in your brain that early after having a stroke, doesn’t actually show up on a CT scan. So that was next to useless, really.

Lisa Cook 8:10
And it could be because it was the middle of the night. It’s kind of around 1130 12 at night. There probably wasn’t an MRI technician available, so they didn’t opt to do an MRI, and they’re a little bit more expensive than your CT scan. So there could be a bunch of trade offs that are happening there that you know could have really expedited the diagnosis here. But they also, when I was in the hospital, undertook some epilepsy tests.

Lisa Cook 8:39
So I was actually those epilepsy tests, you know, didn’t cause me to have an epileptic fit, because that wasn’t the problem, but they did discharge me with a potential first seizure as being the most likely reason why I passed out and was unconscious for an hour. It wasn’t until 12 days later, when I was back in Adelaide and had an MRI because my discharge was under the proviso that I go back home and I go and see my GP and I get an MRI. So I had the MRI, and it was that MRI that showed up that I had had a stroke.

Bill Gasiamis 9:19
Wow. How old were you?

Lisa Cook 9:22
I was 30 at the time.

Bill Gasiamis 9:27
And in the 12 days after you were discharged, did you have any other moments, any other scares, anything else that happened to you that made you feel like something’s still not right. How did it go?

Lisa Cook 9:45
The fatigue, the tiredness, was just off the charts.

Bill Gasiamis 9:51
Lisa’s story is such a striking reminder that stroke doesn’t always look like we expect, and that healing takes time, patience and. Often reinvention. Let’s pause for a moment, and if you’re finding value in stories like this, here’s how you can help keep them going. Stories like leases are exactly why I created the podcast to shed light on real experiences and help stroke survivors feel less alone on the road to recovery.

Bill Gasiamis 10:18
If this conversation resonates with you, please consider supporting the podcast through Patreon, at patreon.com/recoveryafterstroke, Your support helps me continue bring lived experience to light and make a big difference. Now let’s get back to Lisa as she shares more about overcoming survivors guilt, navigating life after misdiagnosis and finding purpose through service. On the Stroke Foundation Board.

Lisa Cook 10:45
I would sleep really long nights, like 9,10, plus hour sleeps, then get up the next day and kind of only really be able to last until lunchtime, and then I kind of fell off a cliff. And the weird thing was, like, the fatigue is one thing. The other thing that was really out of character for me is that I just didn’t care.

Lisa Cook 11:14
I didn’t care that I was that tired, that unmotivated, that literally, all I wanted to do was stare at a wall. And that was just, that’s just not my character. I mean, Bill, you’ve kind of seen me in person. I’m a little bit more energized now. It’s been 10 years, but I still, I still get to that lunch time period each day, and after lunch really have this dip down. It’s, it’s sort of like my capacity for mental work really is only kind of half there. It feels.

Bill Gasiamis 11:56
So they’ve discovered that you’ve had a stroke, how does that news go down? That would have been an interesting thing to deliver to you and your husband after 12 days?

Lisa Cook 12:12
Yeah, I’ll tell you how it all unraveled, because it was, it’s a weird story, and it’s always funny in hindsight, right? I’m glad that we’re here, that we can look back and laugh on some of these things. So I by this stage, when I had gotten to the point where I was having the MRI on the day my husband had gone back to Sydney for work, so I was staying with a friend, because my darling friend did not want me to be alone, given what had happened, and given that we were still so uncertain of of what’s going on here.

Lisa Cook 12:47
And so she was out and about doing something I had Ubered or caught a taxi to the radiology place, had my scan. No big deal. Got back to my friend’s house as I was walking in the door, I get a phone call from the radiology clinic, and they said, We need you to come back. We forgot to scan some parts. And I was like, this is not just a place that like opened up yesterday.

Lisa Cook 13:20
You know, this is a reputable brand. I was like, That’s so weird. What a pain in the butt. Okay, fine. I’m coming back because we need answers. So I went back in the MRI again. Anyone who’s had an MRI, you know, they’re just not, you know, those headphones they give you, where they play you whatever radio station you want, then you can’t hear it anyway.

Bill Gasiamis 13:43
What’s the point of that one MRI is too many, let me tell you.

Lisa Cook 13:48
So as I’m getting out of that second MRI like, getting off the bed, stepping off the bed, holding my gown to, you know, save your dignity as much as you can. The the the person who like shuttles you between the waiting room and the change room and the machine, and then they take you back to the change room and stuff. She came up to me and said, We’ve booked you in to see your doctor at five o’clock this afternoon. They were the exact words out of her mouth. And what do you think I thought when she said that I’m dying.

Bill Gasiamis 14:26
I thought I would have thought the world’s coming to an end.

Lisa Cook 14:29
Yeah, I’m dying. I have a brain tumor. I’ve got three months to live. I’m dying. I’m dead, yeah. And so I said, Why? Why have you booked this appointment? We can’t tell you, and yes, they’re very reticent, but I think she would have acknowledged the fact that she just dropped that on me without any real kind of closing that loop, and rather than let someone live in agony for half a day, she was like, Well, I. The radiologist thinks that they found evidence that you had a stroke.

Lisa Cook 15:06
And I tell you what, I was not expecting that I was not expecting that at all, because to look at me, you can’t tell that something has happened like that. I’m one of the very lucky ones who managed to, somehow, by some sort of grace of some sort of higher power, whatever it was to, to not have any outward signs that I’ve had, you know, brain damage. So I was like, in my head, going through all these things. I’m not old. I’m not disabled. What does this all mean?

Lisa Cook 15:42
I what I do know of things like this is that once the damage is done, the damage is done, it’s not like, it’s going to get worse and because it’s been 12 days, but really let it go, kind of thing. And I was just like, really? And she just said, Do you want to go talk to the radiologist? And I was like, Yeah, so the radiologist, he’s showing me the images of my brain on the screen, on a computer screen, and he’s and he’s Man, these bedside manners of these people sometimes really does make me just get big question marks.

Lisa Cook 16:19
He goes, Yeah, I found this. What you can see this bright white spot on your brain. Some people would think that’s a tumor, but I’m pretty sure that what you’ve had is a stroke, and you probably had it about 12 to 14 days ago. And I’m like, Really, my choice is between a stroke or a tumor, like, what? What is it? Tell me for sure, so I know what’s going on anyway. And I when he said the 12 to 14 days, I was like, Well, today is like 12 days.

Lisa Cook 16:48
How do you know what sort of time period? And he explained that the brightness of the the sort of white patch that you see where there’s been that brain damage is quite bright, the sort of fresher that it is. So he said, so this and this and this, pointed it out. I was like, Okay, this is a lot. And then he goes, by the way, I found something on your cerebellum. I think you’ve had an earlier stroke, but it would have been so small that you probably didn’t even realize it happened.

Lisa Cook 17:27
So I’ve just found out I’ve had two strokes. I just lose my marbles, right? Just bawling my eyes out because I’m just so confused. I’m like this. What does this mean? This doesn’t make sense. I’m I look fine. Yes, I’m really tired, but, but what does this all mean? Like, it was just so overwhelming to get that news, I think, in that fashion and sort of all at once.

Bill Gasiamis 18:00
And did you connect the dots when you said to me that dizziness or not feeling right in your head was common for you, you go, you lie down, and it gets better. Did you connect the cerebellum one with the dizziness later?

Lisa Cook 18:16
No, I, I honestly cannot think of when that might have happened. He, he the radiologist said you might have, like, accidentally bumped into a wall, or, like, dropped something you were holding and, you know, we do that kind of stuff all the time, and just go, what is going on with me?

Lisa Cook 18:37
And, yeah, after you’ve had a stroke, you kind of start to get paranoid with all those little things, but no, I also used to get migraines, and I’ve heard that migraines are associated with PFOs, and if you have your PFO closed, that for some people, it helps alleviate their migraines. There really is nothing that I can connect it with my my dizziness is more associated with my low blood pressure than anything else.

Bill Gasiamis 19:06
Okay, or it could be both. Wow. Anyhow, so you know that the way that they dropped the news to you when I went in to hospital for the first bleed that I had in my head, I was there again at around about 11:30 pm before somebody come to see me and say, we found a shadow on your brain. Oh, my God. And I was like, Okay, wow. What? What does that mean? And then this, I kid you not, these are the words, it could be a tumor. It might be malignant or it might be benign.

Lisa Cook 19:44
Great.

Bill Gasiamis 19:47
The next question was, Do you have any questions?

Speaker 1 19:53
No, that was a very informative description of what’s going on here.

Bill Gasiamis 19:58
I’m like, I. Okay? And he said, but you’ll see somebody tomorrow about it. I’ll take you through and they’ll explain the details. So with that news, I had to update my wife. She was at home with the kids back then, Feb 2012 that was and then I had to ring her, and I’m like, so what do I tell her now and then? What I thought was okay, I’m gonna play the incompetence card. I’m here. They’ve done nothing. They’re taking the time. They can’t get a doctor. There’s no news.

Bill Gasiamis 20:29
Go to sleep, put the kids to sleep, and come and see me in the morning. That’s how I wow, tried to get through the night.And I was like, I can know what was really weird for privacy. He pulled the curtains. Next behind the millimeter-thick curtain is another patient over there. There’s another patient over there, and it’s like, Why do you even bother pulling the curtains? I don’t understand. They’re not going to stop anybody from hearing what’s going on.

Bill Gasiamis 21:01
And I just found that whole experience real bizarre. Anyhow, the next day, I broke it to my wife, and I was 37 so we’re in the same situation as you was like, What is going on? How do we deal with this? How do we move forward now? Okay, so now you know, and then you go for a drive. I imagine you somehow get to your GP, yes, you have a further conversation with him about or her what the situation is, what’s going on.

Lisa Cook 21:33
Yeah. And my I have a really interesting, like, medical past, and weird stuff always happens to me, so my doctors kind of, I think she’s used to me by now, or wasn’t the time, and she was like, Ah, so that’s interesting again. I think I cried to have done a lot of crying. I cried to her. I’m like, I don’t know what this means. It’s just, like, just really full on.

Lisa Cook 22:01
And she explained, well, because you’re young, you’re a young person who’s had a stroke, we need to explore the two lines of possibilities. Well, the most obvious possibilities of why you’ve had this stroke. So the first one is the PFO, the heart thing. So you do that, you go down the cardiologist route with that one, and the other one is an autoimmune thing. So having a stroke is a sign of lupus, or one of the symptoms of lupus.

Lisa Cook 22:33
And so you go for a bunch of, like, 1000s of blood tests around your autoimmune stuff. And yeah, you just, you end up seeing neurologists, cardiologists, rheumatoid what are they called? Rheumatologists, all the ologists end up like talking to you and poking you and prodding you and trying to figure things out.

Lisa Cook 23:00
And yeah, so it turned out that I had the PFO the autoimmune stuff was kind of borderline, but there was nothing that was really definitively calling lupus or anything. So we kind of just closed that avenue of of exploration down. And yeah, went down the heart route. And it was quite, quite my cardiologist described the PFO as quite flappy. I love it. Yes, whatever that means.

Bill Gasiamis 23:33
That’s cool. So not only are you diagnosed with having had potentially two strokes, yeah, a little while later, you’re told that you have a hole in your heart, yeah. And then that most likely was what the cause of the blood clot was that traveled up into your brain, yeah? And now are they talking about closing the hole and having heart surgery? Yeah?

Lisa Cook 23:59
So that sounds more dramatic than what it turns out to be in reality, because, surprise, surprise, a lot of people have a PFO, and they’ve developed a technique and a do you call it a device, that they put in hearts for this reason. So they go in through your femoral artery and they feed up this little device that they then implant into the heart over that spot that should be shut, but there’s a flapping spot they shut the flap down.

Lisa Cook 24:43
So yeah, if they’re going in to give you heart surgery anyway, like crack open your chest kind of thing, they’ll go and fix it at the same time. But if there’s really no reason to open you up so dramatically, they’ll do it through that artery. Okay, and so that was, I said, I have weird medical stuff.

Lisa Cook 25:04
I ended up having an allergic reaction to the antibiotic they put me on before surgery, and that just then they gave me for nurgan to counteract the allergic reaction, which made me feel like I was having a stroke again, because I couldn’t talk when they gave it to me. I just couldn’t find words, and it just was such a weird experience. And, yeah, that was just weird. The whole thing was weird. Wow.

Bill Gasiamis 25:30
So they’ve gone in, and they’ve minimally invasively attended to the hole in the heart that’s been closed over, so to speak. And now, at least from a hole in the heart perspective, you’re out of the risk of having another stroke with regards to the clot, right? So everything’s kind of settled, and you’re cool.

Lisa Cook 25:54
Yeah, the procedure wasn’t 100% successful, so there is a bit of a residual leak, which is annoying. I take aspirin every day for that. I mean, it’s at the in the grand scheme of things, I’m pretty scope free. Yeah, so it’s, it’s more, it’s, it’s no big deal, really. But yeah, it doesn’t mean that I can then go and, like, eat whatever I want and not exercise and, you know, go crazy.

Bill Gasiamis 26:27
You gotta remain healthy.

Lisa Cook 26:28
Absolutely for so many other reasons, other than as well reducing your stroke risk.

Bill Gasiamis 26:35
Just for general good quality of life, but also because you’ve had a stroke and you are a higher risk. So why? Why go against the grain and do the things that are going to make it potentially worse for you? That was my biggest fear, was that I do something that puts me in a situation where I cause another one, yeah, and I don’t want to. I can’t deal with that kind of what, what’s the word like?

Bill Gasiamis 27:00
I probably could, if it happened, if I was that stupid and did it like I could probably accept my responsibility at that stage, but I wanted to avoid that completely and not be that guy. So I’ve gone out of my way to not smoke, not drink, you know, not eat this, not eat that, the whole box and dice so I hear you and so you had fatigue. Yeah, they’ll leave you with any other deficits that you’re dealing with still, or what was that situation like?

Lisa Cook 27:34
I can’t like I don’t want to say I do. But over the years, I have realized that I have two things that I don’t think were there before the stroke. And one is like in the categorization of aphasia, and it’s clear that I don’t have what most people would associate with aphasia. I have a very, very, very, very, very, very mild form of it, where sometimes the word that I want to say doesn’t come out in the way I want to say it.

Lisa Cook 28:12
And when I’m typing, when I’m doing work things, I jumble up letters. Oh, I do that so much, it’s such a pain in the bum, and it gets worse the more tired I am, and it gets worse when I’m overstimulated. So I find that there are some environments, not all the time, but many times that have become, like, too overwhelming to stay in.

Lisa Cook 28:47
Like, if you’re at a concert, or you’re at a busy football game, and like, you’re on the train and you’re like, shoulder to shoulder with everyone trying to go home, or you’re at the markets and it’s really busy and there’s like a band playing, and there’s people there, and someone yelling out names for the orders, and it’s like all that kind of stuff just becomes a little bit too much to kind of your brain to sort of filter through.

Lisa Cook 29:14
And yeah, just so it decides to prioritize that rather than allowing me to speak properly?

Bill Gasiamis 29:22
Absolutely. I know that feeling. I know a lot of stroke survivors know that feeling as well. So it’s really interesting, like your path from 30 now approaching 40, if you haven’t hit the 40 mark yet, and then the role that you decided to take to I suppose you should describe that, right? So we met at a Stroke Foundation event. You are on the board of the Stroke Foundation. What’s behind the thinking of that? Why did you end up on the board?

Bill Gasiamis 29:59
I know you have got some work that you do helping people apply to be on boards, actually, first me first, tell me a little bit about the work that you do, just so we can understand the background, and then what, what was behind the idea to actually join that board, if not you’re, if you’re not involved in other boards, and even if you are, why that one like, what’s the, what’s the long term vision?

Lisa Cook 30:24
Yeah, yeah, I’ll talk through that. So I’ve sat on boards now for about 1516, years, and boards, serving on boards, was always my sort of longer term. We’ll call it career ambition. Let’s say I when I started to get into boards and into governance, I realized that there was sort of a gap to help people who were at that very first starting point on their board journey, so they may be joining the board of the local sport club or a small not for profit, or something like that.

Lisa Cook 30:59
Really how I started my board career, to really get into the boardroom and then to understand what to do once they’re there. So I have a business that works in that space, so I teach boards and board members what they’re meant to be doing and how to do that better. So I do have quite an extensive governance background and experience very soon. So let’s just park that to the side, because I’m sure your listeners do not want to go down that rabbit hole.

Lisa Cook 31:34
And fast forward to when I had my stroke. Like many of us, I wanted to just go back to normal, whatever that I just wanted to not be like I am now, and I just wanted to go back to normal. So probably no, I think I might give a bit more context. So when you have a stroke and you virtually have quote, unquote, nothing wrong with you. You get a really nice dose of survivor’s guilt.

Lisa Cook 32:05
And then once you start getting into the stroke landscape, you realize that there is no age group, there is no demographic that is untouched by stroke, right? It’s not just an old people thing. Babies can have it, and anyone in between those age groups.

Lisa Cook 32:32
So probably about so that realization, understanding it more, giving my given my governance background and experience, probably three years after my stroke, when I finally came to terms with it, and was like, Okay, this is a stroke I needed to have, because it identified that heart problem, and so now what are you going to do about it? Lisa? So I thought, well, I have a voice where others don’t.

Lisa Cook 32:58
I have a skill set and an expertise where some others don’t. And you know, you talk about my nail is, you know, business, the hammer is governance. And I thought, well, boards is how I do things. That’s my wheelhouse. That’s my interest. That’s my zone of genius, if I want to say that. So I thought, why not serve on the Stroke Foundation Board, or any sort of like stroke organization?

Lisa Cook 33:29
Obviously, the Stroke Foundation was there for me very soon after I had my stroke, just to hear from the community. Because you do feel when you’re thrust into this landscape. You think I’m young, I’m the only person who’s had this thing happen to me. You kind of feel a bit alone, and the Stroke Foundation really helped me to understand that I wasn’t alone.

Lisa Cook 33:52
And there’s a lot of people out there who have gone through what I’ve gone through, or have certainly had someone close to them go through something similar, and to help you sort of come to terms with everything, because it it is a lot to to come to terms with and accept. And so exploring how I can get myself involved with the Stroke Foundation.

Lisa Cook 34:15
And I was doing things like fundraising on my birthday, fundraising on my stroke anniversary, doing certain things like that, tangentially, reaching out to people. What else can I do? Sort of thing. Eventually it came about that there was a board position that was open that really did align with that governance experience that I have, that I’d had sort of through my board career. So it seemed like a natural moment, a natural opportunity, and so I put myself forward.

Lisa Cook 34:53
I definitely went through all of the process that any other person who was going for the opportunity. Be went through. And I do believe that having that lived experience on top of what I could bring to that board, being that governance experience really was seen to be a value to the Stroke Foundation.

Bill Gasiamis 35:19
The movement towards a lived experience of late, which is of late, probably the last two or three years from the Stroke Foundation has been amazing, because the amount of lived experience people who are being what’s the word being accessed by researchers, the Stroke Foundation, etc, to help make better programs, better research projects, etc, is phenomenal. It’s fantastic.

Bill Gasiamis 35:54
And now that there’s somebody who had a stroke on the board, like, Yeah, hello. Like, such an obvious thing, isn’t it like that a stroke survivor would be on the board of the Stroke Foundation, but I understand why that might not have been the case up until now, for example, or until you joined. But I want to go back a little bit for a sec where you spoke about your survivor’s guilt. So What’s all that about? Like, why did you feel guilty for surviving a stroke?

Lisa Cook 36:26
Yeah. Well, you hear about, you know, we hear a lot about the high profile people the the most recent one that comes to mind is Jessica Watson, who was that young lady who sailed around the world when she was 16 or so that her partner in the last handful of years had a stroke and passed away from it. So you look at two extremes. You could be someone like me, where you kind of people look at you and they say, Well, you don’t look like you’ve had astroke, which is true, and I don’t find that offensive, because I don’t look like someone who’s had a stroke.

Lisa Cook 37:05
But then you have the other extreme, where people are dying, if this does kill people, and there’s a broad, vast range of spectrum in there, from being sort of, quote unquote totally fine, and quote unquote normal to dead, and a lot of people have a lot of disabilities and chronic issues that come from experiencing a stroke. Why did I not get that? And why did that next person get that and why did that person die?

Lisa Cook 37:44
And why did that baby lose half their head like you just can’t get into it, because you’ll fall into an existential crisis. But it’s, it’s real, and I, I would feel, and probably guess, that there’s a lot of stroke survivors out there probably even ones who have disabilities and impairments from their stroke that have a degree of survivor’s guilt.

Bill Gasiamis 38:11
I agree, because I’ve interviewed a ton of them, and I’m one of them, and it was an existential crisis, and it was like, Well, how do I go about life now? And am I just gonna treat this like a stubbed toe and move on? Yeah, or what? Because I nearly died two times.

Bill Gasiamis 38:37
Well, maybe the second time really came close to if I wasn’t at hospital, probably death properly, because I blanked out when I got to emergency, and I don’t recall what happened after I announced myself and said My name’s Bill, and that’s pretty much all I remember. And then I wake up in a bed all connected and all that stuff, right?

Bill Gasiamis 39:05
And then the third time, I had brain surgery, which could cause all sorts of dramas for people. And it’s like, okay, well, I can’t possibly treat this like a stub toe. It’s far more serious than that, and it was the first thing that taught you about your mortality.

Lisa Cook 39:27
It makes you realize how thin that veil between life and death really is, and that’s so confronting. And how, how lucky, how luck plays in it as well. My mom likes to bless her, I’m sure it’s a survival mechanism. Likes to think that because I was healthy and exercising before my stroke, that that’s what meant that I didn’t get any impairments. And I have to keep telling her, no, it’s actually just luck, where. That clock decided to travel to where it landed, what it did.

Bill Gasiamis 40:04
Luck, random, explainable luck.

Lisa Cook 40:10
It’s crazy and it’s not. And then you go down the avenue of well, that that’s not fair, that’s not right. And I have to keep reminding people, this stuff isn’t about fairness. This stuff isn’t about what’s right. That’s just not how this stuff works. It’s not how it works, and that’s hard for us to take because we like to feel that we control our environment and the outcomes that we get, to a degree, especially me.

Bill Gasiamis 40:42
Bit of a control freak. Is that? Was that a type A personality?

Lisa Cook 40:46
Yeah, fair enough.

Bill Gasiamis 40:48
I had the existential crisis, and then it was about, well, you’ve learned a little bit on this journey. You gotta do something about it. You know, your there’s no point bitching and moaning about all the deficits that you live with, numbness, fatigue, a little bit of spasticity, muscle tightness, some dizziness, every once in a while, migraines. Now there’s no point whinging about it you’re you feel alone, so just go find people you need to learn more.

Bill Gasiamis 41:23
So why don’t you go and reach out to as many people as you can? Hence, the podcast, the book, the whole box and dice, everything that became the recovery after stroke community, the YouTube channel, etc. And that brought a lot of purpose and meaning. That’s kind of what came from it, purpose and meaning that I didn’t have, which I added to my already purposeful and meaningful life of being a dad and a husband.

Bill Gasiamis 41:53
That was a very shallow version of what purpose and meaning is not that it’s not a cool cause, it’s an amazing cause, but it’s a very narrow cause, like, it’s a small niche in what purpose and meaning could be about, right? And then it was also about, well, I can sit a really good example here to my loved ones, family, friends, whoever, about how you tackle a massive existential crisis.

Bill Gasiamis 42:17
You know what you do and how you make the most of the second chances that you’ve been given, or the opportunities you’ve been given that you didn’t know could be taken away from you, right? And I feel like that’s also what you’re doing by attending to to in your way, make somehow a difference in the community that you were selected to be a part of by randomness that you didn’t really choose to be a part of.

Lisa Cook 42:53
Yeah, that’s a lot of what it is there’s there comes a point. And I feel like this is a lot of people you talked about how the foundation really taps into the lived experience and those amazing people that step forward because it is hard, and it is hard if you’re constantly the one being drawn on for that lived experience to really represent, represent such a broad array of of people and experiences and outcomes, and everyone has because it’s the brain.

Lisa Cook 43:25
Everyone’s got their own unique, different experience. It’s hard to to encapsulate that through like one person or a small group of people, but what drives those people to step forward, even though it is hard because you’re reliving that trauma every single time you talk about it, is that desire to make it mean something I can’t have gone through this harrowing experience just to like you said, treat it like a stub toe. Go, okay?

Lisa Cook 44:01
It’s the next day. Now, whatever’s on with life, which, if that’s you listening, and that’s how you’ve dealt with having a stroke, that is, you do what you have to do, right? Like, cool, there’s no, there’s no right or wrong way to to recover after stroke. But that whole sense of which, I think is a human condition, our desire to give meaning to something, to make meaning from what has gone on.

Bill Gasiamis 44:36
It’s to wrap the head around that somehow, and then to go, Okay, I’m gonna, I’m gonna make it mean more than what it meant, which was, I think that’s what it is for me. It meant You nearly died. And it’s like, I’m gonna make it mean more than that. That’s not good enough. That’s, I don’t want to contemplate that so often that I nearly did. And make it I am probably a lot more comfortable with the idea of death these days, but still, I’m not really keen to just think about it as a oh, well, you nearly it all nearly almost died, you know?

Bill Gasiamis 45:12
So I remember, just a couple of weeks ago, I posted a vlog, my first vlog, where I spoke about my fatigue and all the challenges that I was going through. I posted it on YouTube, and it’s been really popular, and people commented, and there was a person who come and I did the vlog walking around my neighborhood, just talking because I was having a bad day. Yeah, and somebody commented, and I don’t know where in their recovery journey they are that they will never walk like I am walking around right after their stroke.

Bill Gasiamis 45:49
And it’s like, Thanks for the reminder. Yeah, pretty jarring to hear that again from another stroke survivor and and it’s like, I totally get my opportunity. And why I am, I don’t know. Maybe this is the dumb way to explain it. Luckier than you in that particular situation, okay, I’m able to walk in your not, even though I have deficits. However, I don’t from that. From that person’s perspective, maybe they’re early on in their recovery.

Bill Gasiamis 46:30
Maybe they haven’t dealt with certain things enough yet. What I want to say to people like that is, well, that might be the case, but there’s no reason why you can’t experience a full life either, and there’s no reason why you should just give up at that stage and not continue to look for ways to improve your life. Yeah, I don’t know, and don’t let me be or the doctor or anyone else be the judge of to what extent you’re going to live your life, you know.

Bill Gasiamis 46:58
And I always go back to Stephen Hawking, you know, the great physicist who was completely and totally disabled because of his motor neurons disease, I believe it was called, and still was, the leading physicist in his field, until the day he died, and the majority of his life he spent not even Being able to move anything other than his eyes. Yeah, and it’s like, I know you’re doing a tough and at the same time, I want to remind you that there are other people who are doing it as tough, if not worse than you.

Bill Gasiamis 47:33
And I don’t know if there’s anyone doing it tougher than somebody like Stephen Hawking and And nonetheless, has lived an extraordinary life according to the majority of the population and the people who met them, right? So I I hear what you’re saying and I accept your comment, and it is a great reminder about my responsibility to continue doing the work that I’m doing to make it easier for people like you, I’m going to advocate for me, for the person on the other side of the screen, and for you who I’ve never met before.

Bill Gasiamis 48:05
I suppose, if that makes it any better, I hope that that helps you know, I think that that’s my responsibility, like I don’t know. That’s how I try and grapple with comments like that and people’s journeys with the very debilitating parts of stroke, way more debilitating than my little whinge that particular day.

Lisa Cook 48:31
I think it’s all relative, and feel like it’s absolutely 100% normal to be angry, to be angry at what happened, especially because with something like stroke, it’s not like you’re given a warning. It’s not like it’s coming in in 12 months, like get prepared to live your life completely different. It’s literally blink of an eye. Old life gone, new life. Here we are, and you’ve got no time to adjust. So all this stuff compounds.

Lisa Cook 49:06
And like we said, how you experience stroke is different to how I experience stroke is different to this guy that made this comment, experience stroke none is is right or wrong, or better or worse, or anything like that, like I often feel at times that people, and I’ve never had anyone, do anything or say anything to me that would make me feel like this. This is my issue, that I’m like, I haven’t done stroke, right? Because I’m not impaired physically, like people will look at me and just go, what would she know? She’s fine, she’s normal. She doesn’t look like she’s had a stroke, and that plays on it as well.

Lisa Cook 49:46
It’s like, well, you know, let’s talk about the psychological impacts of having a stroke. And chances are, our psychological journey has been very similar, yeah, in a lot of things. But it is all relative. We can’t look at someone and go, Yeah, but you’re you’ve got it so much better than me. Yeah, okay, maybe I do in some aspects, but you don’t know the whole picture of someone. You don’t know the whole thing.

Lisa Cook 50:12
And just because Bill’s at this stage with this outcome from a stroke, and you’re at that stage with that outcome from a stroke. It doesn’t mean that bill’s luckier than you or different than you, or better or worse. Or, like, you’ve just gotta see it that it’s all relative. Everyone’s on their own journey. And like, you were emphasizing it really is your choice at the end of the day, of like, what do you do with this, okay, you’ve been served up this real crab cake.

Lisa Cook 50:44
But then what you choose and decide to do next really is up to you, and no one can take that away. Stroke can’t take that away. You still have your own vocation, right? You can choose to do and react however you like. If that helps.

Bill Gasiamis 51:06
It all helps. The whole conversation helps. And it’s not that, you know, it’s just that it’s good because it makes me contemplate things from somebody else’s perspective and the part of the journey that they’re on. You know, the hardest part when people see me doing a vlog 13 years post stroke, I mean, that’s it’s been a long a lot of water under the bridge to get to today, and you’re looking at the vlog and You’re going, Ah, I should be that recovered.

Bill Gasiamis 51:41
Or, why is he so well? Or how did he get to that so quickly? It’s like, man, it’s been 13 years of ups and downs and wondering whether I’m having another stroke and having an actual another one, and having brain surgery and not being able to walk and learning how to walk again, and not being able to work, and not being able to be a regular member of society, like the whole thing has been dramatic, and having emotional challenges like I’ve never had before, and psychological challenges and counseling and all that kind of stuff.

Bill Gasiamis 51:55
And that’s the biggest challenge I have, is like my you know you can’t wear all your badges all at once because people wouldn’t be able to read them anyway, but also, you have to just present yourself at the stage that you’re at, and that’s really important, so to try and every so often, explain to people or remind people about that I’m presenting myself at the stage I’m at when I was much sicker.

Bill Gasiamis 52:43
I couldn’t do a vlog, I couldn’t do a post, I couldn’t have a podcast, I couldn’t write a book, I couldn’t read or type or do any of that stuff. So we’re at that stage so many years down the track, and I’m just trying to go, I’m going to get you to engage with me in any way I possibly can so that I can teach you something, and maybe if what I’ve done to you now 13 years out is remind you of like where you might be in 13 years, or how your 13 year journey from your two year part of the journey is completely different, maybe even that’s a Cool thing, I just did that, and hopefully that’s going to help you.

Lisa Cook 53:25
Yeah, if not a reminder that time is going to pass, whether you want to be angry about it or not, the time is still going to pass.

Bill Gasiamis 53:37
Yeah, it sure will. And it passed so quick. Even though it feels like forever, it also feels like forever, and at the blink of an eye, I just can’t wrap my head around how there’s been this warped experience of my timeframe, like it’s so weird, and when I talk about it, I’m right there back then. I’m not reliving it, though, because I think after 350 episodes of just talking forever about it.

Bill Gasiamis 54:10
I’ve stopped reliving it, and I’m more remembering my remembering when I share it, rather than reliving it. But I have had a few crying moments when I’m having a bad day or whatever, and it’s related to the stroke. It’s still related to that. But it’s not about what happened to me. It’s about on my the difficulty of my yeah, that particular day.

Lisa Cook 54:39
Yeah, and just being upset that everything’s now a little bit harder, right? Yeah? Like, come on, man, you know, I think that’s totally normal. I think that’s totally normal.

Bill Gasiamis 54:52
Yeah, yeah, what would you say was the hardest thing about stroke for you?

Lisa Cook 55:01
I think just accepting, accepting that I can’t go back to normal, normal is a figment of your imagination. Now, there’s a different normal, and how can we thrive, given where we are now, like what you were talking about 13 years out. I’m nearly 10 years out, what thriving looks for me now, obviously could never have been what thriving would look for me in the six months, 12 months. You know, I said it took three years to really come to terms with it and accept it and go, Okay, we’re going to put the line in the sand. Now. What do we do about it? Yeah, that was probably the hardest part.

Bill Gasiamis 55:47
And what would you say it has taught you, you know, like, really taught you.

Lisa Cook 56:00
I have a funny thing happened to me after I had my stroke. I used to so before stroke, I used to be really scared of flying, right airplane. Fear of flying, very normal. A lot of people have it. After I had my stroke, my brain was like, you cannot have survived a stroke only to die in a plane crash. So now I’m fine on an airplane. So I don’t know how that works. That’s just how the brain is thinking. And yeah, that’s what’s come about from it.

Bill Gasiamis 56:43
That sounds like the lightning doesn’t strike in the same place twice.

Lisa Cook 56:52
Relying on that now. So touch wood.

Bill Gasiamis 56:56
Flying is the safest form of transportation.

Lisa Cook 56:59
Look, you could ask me to rationalize until the cows come home, but that emotional, like response that I would get just, it’s irrational, yeah.

Bill Gasiamis 57:04
It’s also irrational because there’s like, I don’t know how many tons is an airplane, and that shouldn’t be floating in the air.

Lisa Cook 57:23
So you, you know you can then research into how power planes actually flying, like how does the physics under it, the physics of flying and that that can help you to feel more comfort in it as well. So, but yeah, or you can have a stroke.

Bill Gasiamis 57:46
You get over it for it.

Lisa Cook 57:49
So what it taught me is maybe the things that you’re scared of, like actually aren’t that scary relative to so I guess you can get a new set point. And part of me feels like, I feel like everyone at one point in their life will have a near death experience.

Lisa Cook 58:12
And I feel like for some of us, we were kind of lucky enough to have that early enough in our life that we could then really change how we think and feel about things, and then about what we do and what we can and can do, like we might do, things that past us would think are a bit scary, and I’m not sure I want to do that, whereas now we’re Like, really, how bad can it freaking be?

Bill Gasiamis 58:43
I before stroke was a tradie, still have that business, and I’m painting people’s houses, you know. And I don’t talk on a podcast, I don’t interview people, I don’t write a book, I don’t do public speaking, I don’t do presentations, I don’t involve myself with communities other than the very close community that I hang out with, family, friends, etc. It’s a completely different version of me after stroke, and that’s one that most people wouldn’t recognize.

Bill Gasiamis 59:16
They would that people that knew me wouldn’t recognize it, but they would encourage it. They would say, yeah, that was cool, what you’re doing, and it’s great to see. And they would support it, but they wouldn’t recognize it. I don’t recognize myself. I don’t even know how I got into this situation and why I took each step that I took, other than every time I took it. I learned something new. The curiosity got the better of me and and I think I approached after stroke from a curiosity mindset. And curiosity killed the cat, but satisfaction brought it back, you know.

Lisa Cook 59:56
I agree with that 100% And I feel like so many others on their stroke journey would probably have the same reflections as well. If you were to think of because a lot of people who haven’t had a stroke will look at those stroke survivors, particularly the ones that have impairments, disabilities, and it looks like they’re struggling, you would think crap. I could never cope with that.

Lisa Cook 1:00:26
If that was to happen to me, I think I would fall apart. But when you’re not given a choice but to survive, but to find a way to thrive, whatever that means for you, you actually realize the potential that you actually do have. And yeah, those people that may not have had something so traumatic happen in their life, maybe they are not reaching their full potential and are underplaying what they could be doing.

Bill Gasiamis 1:01:00
Yeah, and great good luck to them. I hope that they get to that stage without a stroke or a heart condition or something else, right? That’s, you know? Yeah, We’ll root for them to either get there or not get there however they want, but without a medical situation. But that’s how thick I am.

Lisa Cook 1:01:23
Yeah why do we need that trauma to to get us to that point?

Bill Gasiamis 1:01:29
That’s how thick I was. Like, I needed to have all of this stuff happened for me to find my voice. And I’m okay with it, but it was, it is interesting to contemplate. You know, from a philosophical perspective, it’s like, yeah, why did you have to go to that much trouble? Yes, the outcome that you have, and it’s like, you’ve always done things the hard way, but this is pretty hard I mean, really.

Lisa Cook 1:01:55
This is extreme. Yes, it’s so funny. I feel like I have to, like, you have to hit rock bottom before you can kind of get better. I feel like that’s like a pattern in so many areas of my life. But I feel like that then maybe puts the burden of responsibility on us that we gave ourselves a stroke, whereas that’s not, I mean, what caused yours? Do you know?

Bill Gasiamis 1:02:21
Well, a faulty blood vessel that I was born with an arteriovenous malformation, right? That stays benign, or every once in a while for people, many people, it pops. And you might not have it in your brain, you might have it somewhere else in your body.

Bill Gasiamis 1:02:36
So mine was just in my brain, and it did nothing for 37 years and then, I do say, though, that I still created the perfect storm around it, smoking, not drinking excessively, but drinking, stressing out at work too much, probably working 16 hours a day because I was a bit of a control freak.

Bill Gasiamis 1:03:02
I didn’t want to outsource things to other people. I didn’t seek the help that I should have, you know, so I created the perfect storm around this blood vessel so that it doesn’t have the support that it needed to not pop. And people we find ourselves in that situation in life. Sometime we put ourselves under undue pressure, and I was really good at doing that. I’m less.

Bill Gasiamis 1:03:29
I do that less these days, but it was I realized very quickly as well that I can’t continue going about my life in the same way that I had, because it wasn’t, it wasn’t going to be conducive to a good outcome, whether it was heart attack or high blood pressure or something else. So that’s kind of how I got to that stage. I wanted to as we wrap up, I wanted to ask you one last question.

Bill Gasiamis 1:04:00
So people are listening here, and you and I, we’ve been on our journey for a little while, and they’re probably looking for some guidance, some wisdom, some nugget, on short notice, I know. And putting you the under pressure, a little bit under the microscope. What do you want to tell people who are listening who are perhaps a little bit earlier on in their journey compared to us.

Lisa Cook 1:04:28
The thing that came to mind, Bill was that it gets better. It gets better. It’s you’re not going to go back to what was beforehand. I think that’s having gone through that and wanted that, and realizing it’s not going to happen. It’s not going to happen. So work on accepting that as much as you can. There’s no, like we said, there’s no right way or wrong way to really process come. To terms with it and recover, but it does get better.

Bill Gasiamis 1:05:05
I would agree with that. And the acute phase is the worst phase. And I think for me, one of the things that it was good for me to remember was that the acute phase lasted years. It didn’t, Yes, last only two weeks or three months or six months. The acute phase lasted years. And I’ve gotta say for me, I reckon the acute phase lasted about three and a half years, four years, something like that.

Bill Gasiamis 1:05:35
Yeah, and and then I started to turn the corner. But by then I had dialed in my nutrition. I had dialed in, you know, my my inner work. I had done a lot of meditation and psychological counseling, you know, so I had dialed in a lot of things. And that is kind of what made me move the needle to in my favor further than where it was before.

Lisa Cook 1:06:08
And ask for help.

Bill Gasiamis 1:06:10
Yeah, that is a beauty, actually. Yeah, and we’ll end on that one. Thank you so much for joining me on the podcast. I really appreciate the chat.

Lisa Cook 1:06:18
Yeah, thanks, Bill. I’m really glad that you’ve given me the opportunity to share my story.

Bill Gasiamis 1:06:24
Well, that brings us to the end of this moving episode with Lisa from being misdiagnosed after a thalamic ischemic stroke to facing extreme fatigue, uncovering a PFO and confronting survivor’s guilt. Lisa’s journey reminds us that recovery isn’t just about what’s visible. It’s about navigating the internal landscape too. Her courage to share, serve and advocate, especially through her role on the Stroke Foundation Board, shows just how powerful lived experience can be.

Bill Gasiamis 1:06:57
If today’s episode resonated with you, I’d love to hear from you, leave a comment, like and subscribe on the YouTube channel, and if you’re listening on Spotify or iTunes, consider leaving a five-star rating. It would mean the world to me. It also helps more stroke survivors discover the podcast and join this supportive community. Remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. You can find it on Amazon or by visiting recoveryafterstroke.com/book, and if you’d like to support the podcast directly, head over to patreon.com/recoveryafterstroke. Thank you so much for being here and for making this podcast part of your journey. I’ll see you in the next episode.

Intro 1:07:42
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 1:08:12
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 1:08:37
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

Intro 1:09:03
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 She Collapsed in a Hotel Room. 12 Days Later, They Found the Stroke appeared first on Recovery After Stroke.

Life can change in an instant.

But if you’re reading this, know this: there is a path forward.

Stroke, diabetes, and burnout are interconnected challenges, but they can also become unexpected catalysts for powerful personal transformation.

For many people, the warning signs were there — subtle at first, then growing louder over time:

When we live at full tilt for years, our bodies eventually demand our attention in ways we can no longer ignore. Stroke, diabetes, and burnout is not just a collection of separate issues — it’s often the result of a life stretched beyond its limits.

Surviving a stroke, managing diabetes, and recovering from burnout can feel like running three marathons at once.

Here’s what recovery often teaches survivors:

The real victory isn’t just recovering physically — it’s discovering a deeper, richer way of living.

Recovery is not about perfection.

If you’re facing the complex intersection of stroke, diabetes, and burnout, know that thousands of others are walking a similar path — and thriving.

Your wake-up call may be the very thing that leads you to the most meaningful chapter of your life.

Mike’s story of stroke, diabetes, and burnout shows how recovery, resilience, and emotional healing can lead to a stronger, healthier future.

Premier Aquarium

Highlights:

00:00 Introduction and Acknowledgements

Transcript:

Bill Gasiamis 0:00

Bill Gasiamis 0:28

Bill Gasiamis 1:03

Bill Gasiamis 1:34

Bill Gasiamis 2:09

Bill Gasiamis 3:06

Mike Maki 3:13

Bill Gasiamis 3:39

Mike Maki 3:45

Bill Gasiamis 4:20

Mike Maki 4:21

Mike Maki 5:04

Mike Maki 5:45

Mike Maki 6:17

Mike Maki 6:53

Bill Gasiamis 7:17

Mike Maki 7:19

Bill Gasiamis 7:27

Mike Maki 7:37

Mike Maki 8:09

Mike Maki 8:40

Mike Maki 9:10

Bill Gasiamis 9:35

Bill Gasiamis 10:01

Bill Gasiamis 10:01

Mike Maki 10:51

Mike Maki 11:29

Mike Maki 12:06

Mike Maki 12:45

Mike Maki 13:23

Bill Gasiamis 13:51

Mike Maki 13:56

Bill Gasiamis 14:24

Bill Gasiamis 14:55

Bill Gasiamis 15:23

Bill Gasiamis 16:14

Bill Gasiamis 17:00

Mike Maki 17:28

Mike Maki 18:05

Mike Maki 18:45

Bill Gasiamis 19:11

Bill Gasiamis 19:49

Bill Gasiamis 20:18

Bill Gasiamis 20:57

Bill Gasiamis 21:36

Mike Maki 21:58

Bill Gasiamis 22:09

Mike Maki 22:23

Mike Maki 22:59

Mike Maki 23:33

Mike Maki 24:14

Bill Gasiamis 25:26

Bill Gasiamis 26:09

Bill Gasiamis 26:50

Bill Gasiamis 27:28

Bill Gasiamis 28:12

Bill Gasiamis 28:47

Bill Gasiamis 29:19

Mike Maki 29:39

Mike Maki 30:09

Bill Gasiamis 30:40

Bill Gasiamis 31:17

Mike Maki 31:45

Bill Gasiamis 32:12

Bill Gasiamis 32:44

Bill Gasiamis 33:29

Mike Maki 34:15

Bill Gasiamis 34:43

Mike Maki 34:56

Bill Gasiamis 35:46

Mike Maki 35:48

Mike Maki 36:17

Mike Maki 36:48

Bill Gasiamis 37:13

Bill Gasiamis 37:55

Mike Maki 38:20

Bill Gasiamis 39:00

Bill Gasiamis 39:43

Mike Maki 40:06

Bill Gasiamis 40:09

Mike Maki 40:30

Bill Gasiamis 40:39

Mike Maki 40:43

Bill Gasiamis 40:45

Mike Maki 41:02

Bill Gasiamis 41:31

Mike Maki 41:35

Bill Gasiamis 41:36

Mike Maki 41:53

Mike Maki 42:30

Mike Maki 43:08

Mike Maki 43:45

Bill Gasiamis 44:15

Bill Gasiamis 44:49

Mike Maki 45:19

Bill Gasiamis 45:56

Bill Gasiamis 46:32

Mike Maki 47:01

Mike Maki 47:38

Bill Gasiamis 48:21

Mike Maki 48:31

Mike Maki 49:13

Mike Maki 49:47

Mike Maki 50:26

Bill Gasiamis 50:56

Bill Gasiamis 51:36

Bill Gasiamis 52:17

Bill Gasiamis 52:48

Mike Maki 53:12

Bill Gasiamis 53:14

Mike Maki 53:19

Mike Maki 54:06

Mike Maki 54:30

Bill Gasiamis 54:52

Mike Maki 55:02

Bill Gasiamis 55:35

Mike Maki 55:43

Bill Gasiamis 56:08

Mike Maki 56:23

Mike Maki 57:03

Mike Maki 57:26

Bill Gasiamis 57:49

Mike Maki 57:52

Bill Gasiamis 58:30

Mike Maki 58:53

Bill Gasiamis 59:13

Mike Maki 59:18

Bill Gasiamis 59:52

Mike Maki 1:00:24

Bill Gasiamis 1:00:50

Mike Maki 1:01:03

Mike Maki 1:02:01

Mike Maki 1:01:41

Bill Gasiamis 1:02:06

Bill Gasiamis 1:02:34

Bill Gasiamis 1:03:10

Bill Gasiamis 1:03:51

Mike Maki 1:04:24

Mike Maki 1:05:07

Mike Maki 1:05:36

Bill Gasiamis 1:05:57

Mike Maki 1:06:22

Bill Gasiamis 1:06:34

Mike Maki 1:07:15

Bill Gasiamis 1:07:24

Bill Gasiamis 1:08:03

Intro 1:08:31

Intro 1:09:00

Intro 1:09:25

Intro 1:09:52

The post From Stroke to Strength: Mike’s Journey Through Diabetes and Burnout appeared first on Recovery After Stroke.

I was working on my computer, replying to emails, when I received the same article twice—once from a podcast listener and again from someone I coach in stroke recovery. That headline hit me like a bolt of lightning:

It’s not every day we hear the words “drug” and “stroke recovery” in the same sentence. Naturally, I had to look into it—and now I want to share what I’ve learned and what it might mean for us.

Published in Nature Communications, the study led by Dr. S. Thomas Carmichael, Chair of Neurology at UCLA, explored whether the benefits of physical rehabilitation could be reproduced in drug form.

Here’s the core finding: a new drug, tested in mice, restored lost movement and brain connectivity by mimicking the effects of physical rehab. Specifically, it reactivated parts of the brain that had gone “offline”—not damaged, just disconnected.

The implications are massive. Currently, there are no approved drugs that aid in stroke recovery. Survivors must rely on physical rehabilitation, which many can’t access or sustain due to fatigue, cost, or limited healthcare support.

The drug targets a special type of neuron, parvalbumin neurons, that help generate gamma oscillations, a brain rhythm necessary for coordinated movement. These rhythms often vanish after a stroke, leaving certain brain regions disconnected.

UCLA’s new compound, DDL-920, helped regenerate these connections and restored coordinated movement in mice. That’s a first.

Let’s be real: this drug isn’t available yet. It’s years away from human trials. But the study raises an important question:

There are already a few treatments out there aimed at “reawakening” sleepy or disconnected parts of the brain:

Even with promising developments, physical rehabilitation remains vital. Whether you’re using a walker, in a wheelchair, or working with one functioning side, movement matters.

Every effort you make counts, because neuroplasticity (the brain’s ability to rewire itself) is driven by repetition and action.

Besides medical options, there are things you can do today:

The UCLA study brings hope for the future, but we can’t sit around waiting. The journey of recovery demands curiosity, experimentation, and effort.

Whether it’s exploring new treatments, improving your diet, or moving just a little more each day, you have more tools than you think.

And if that pill comes to market one day? You’ll be even better prepared to benefit from it.

Until then, let’s keep doing the work.

UCLA Article

Etanercept for Stroke Recovery: MYTH? or Reality – Andrew Stopps

Perispinal Etanercept & Stroke Recovery Story: Dwayne Semple

Reviving the Brain: Hyperbaric Oxygen Therapy for Stroke Recovery | Dr. Amir Hadani

HBOT for Brain Repair and Stroke Recovery – Shai Efrati

UCLA stroke drug study gives stroke survivors fresh hope for recovery. Discover how this breakthrough compares to treatments like etanercept and HBOT.

Highlights:

00:00 UCLA’s Discovery of a Stroke Rehabilitation Drug
04:59 Identifying Brain Connections and Candidate Drugs
09:25 Challenges and Current Interventions
14:21 Repetitive Transcranial Magnetic Stimulation and Future Research
18:11 Importance of Physical Rehabilitation and Lifestyle Changes

Transcript:

Bill Gasiamis 0:01
I’m sitting here doing some work on my computer, sending emails, and I received an email for the second time in two days on the same topic from two different people. The first one was somebody who follows the podcast. The second one was somebody who I coach on their stroke recovery journey.

Bill Gasiamis 0:20
And I’ll read you the title of the article, and then I’ll read some sections of the article, just so you can get a sense of what it is that they’re talking about. So the heading goes, UCLA discovers first stroke rehabilitation drug to re establish brain connections in mice.

Bill Gasiamis 0:39
It continues by saying a new study by UCLA health has discovered what researchers say is the first drug to fully reproduce the effects of physical stroke rehabilitation in mice. So what this drug does is it creates improvements in the brain through a pill that physical rehabilitation often can achieve for stroke survivors during their rehabilitation phase.

Bill Gasiamis 1:15
The findings published in Nature Communications tested two candidate drugs derived from their studies on the mechanisms of the brain, effects of rehabilitation, one of which resulted in significant recovery in movement control after stroke in mice.

Bill Gasiamis 1:36
There are no drugs in the field of stroke recovery, requiring stroke patients to undergo physical rehabilitation, which has shown to be only modestly effective. So what they’re doing is they’re downplaying a physical rehabilitation in this particular publication, and they’re saying what they’re going after is the going after a pill that will mimic the effects of physical rehabilitation, but take it to the next level.

Bill Gasiamis 2:06
The goal is to have a medicine that stroke patients can take that produces the effects of rehabilitation, said Dr. S. Thomas Carmichael, the study’s lead author and professor and chair of UCLA, neurology, rehabilitation after stroke is limited in its actual effects, because most patients cannot sustain the rehab intensity needed for stroke recovery.

Bill Gasiamis 2:30
So he’s discovered that and correctly so that a lot of stroke patients can’t have the intensity of physical rehabilitation needed to recover those parts of the brain that are not functioning correctly, and that might be for a number of reasons, because fatigue gets in the way, also because maybe insurance forgets that they need to support these people and stops paying.

Bill Gasiamis 2:58
And as a result of that, there isn’t enough physical therapy that’s being done for stroke survivors to actually get the effects that they may otherwise have been able to get if they were able to sustain the physical rehabilitation. I mean, it’s not news to stroke survivors that insurance companies don’t support enough and that physical rehabilitation is difficult. We know that, and we need all the help we can get, and hopefully this particular drug addresses that issue.

Bill Gasiamis 3:32
Now, further stroke recovery is not like most other fields of medicine where drugs are available that treat the disease, such as cardiology, infectious diseases or cancer. Carmichael said rehabilitation is a physical medicine approach that has been around for decades. We need to move rehabilitation into an era of Molecular Medicine, and I kind of agree with that statement, like physical rehabilitation is the only tool that we’ve had.

Bill Gasiamis 4:05
It’s kind of like, the brick layer has only ever been able to use a trail to lay mud on a brick and lay bricks. It’s been done like that for centuries. And I think what he’s referring to is that although physical rehabilitation is a really good tool for stroke survivors, it’s probably not as effective as it could be because of the limitations that are associated with physical rehabilitation.

Bill Gasiamis 4:35
The pain the patient’s abilities, and also the lack of, in my opinion, the lack of support by insurance companies. In the study, Carmichael and his team sought to determine how physical rehabilitation improved brain function after a stroke and whether they could generate a drug that could produce the same effects, working in a laboratory with mice models of stroke.

Bill Gasiamis 4:59
And with stroke patients, the UCLA researchers identified a loss of brain connections that stroke produces that are remote from the site of the stroke damaged. So what they’ve identified is areas of the brain that have been taken offline because of the stroke but are not damaged.

Bill Gasiamis 5:19
So if the stroke happened here, they may have found that there’s an area of the brain back here that has been taken offline, that isn’t damaged, but it has been taken offline as a result of the stroke that happened over here. This part of the brain may be damaged, but this part of the brain isn’t damaged. It’s still there. It’s kind of sleepy, it’s alive, but it’s not connected to the rest of the brain.

Bill Gasiamis 5:44
And what they are hoping to do is find a way to re link that part of the brain to the rest of the brain so that it can take over the tasks that were lost with the damage that occurred after the stroke. So the UCLA team found that some of the connections that are lost after a stroke occur in a cell called the paravalbumin neuron.

Bill Gasiamis 6:12
Oh, my God, I butchered that. This type of neuron helps generate a brain rhythm called gamma oscillation, which links neurons together so that they form coordinated networks to produce a behavior such as movement. So basically, those particular hard to pronounce neurons create a particular function called the gamma oscillation, and that is what helps connect that area.

Bill Gasiamis 6:40
Usually that’s offline to the rest of the brain, and because of the stroke, that oscillation has been temporarily made not available, and therefore that part of the brain is switched off and makes it look like that person has lost that particular function. Some people might describe that area that’s offline as a penumbra. Usually, the penumbra that is spoken about is spoken about in this part of the brain where the damage has occurred.

Bill Gasiamis 7:11
A Penumbra is an area that’s been inflamed by the injury, and usually it is the first thing to come back online within the first six months. But what they’ve discovered is that after stroke, there’s penumbras in other areas that have been previously overlooked. So Carmichael and the team identified two candidate drugs that might produce gamma oscillations after stroke.

Bill Gasiamis 7:34
So what they’re hoping is that these drugs will create those gamma oscillations, those movements after the stroke, and specifically work to excite the par Val buen neurons. The researchers found that one of the drugs developed in the UCLA lab of Varghese John who co authored the study and produced significant recovery in movement control in mice. So they’ve identified two drugs, and as a result of that, they are seeing that they’ve been able to reproduce recovery in the mice in their research that have experienced the stroke.

Bill Gasiamis 8:16
So as we get to the end of the paper on the reporting of what the study found. The final part says it first identifies circuitry that underlies the effect of rehabilitation in the brain. So it identifies the circuitry that underlies the effect of rehabilitation, that is responsible for the rehabilitation that can support the rehabilitation, and then identifies a unique drug targeted in this rehabilitation brain circuitry to promote recovery by mimicking the main effect of physical rehabilitation. So the plan is to identify if there’s areas in the brain that can be supported and rehabilitated.

Bill Gasiamis 9:05
And then what they do is they use one of the drugs to create or support the brain circuitry that’s been switched off to promote the recovery by mimicking the main effect of physical rehabilitation. So what they’re doing is they’re trying to determine where those areas of brain that switched off are.

Bill Gasiamis 9:25
Then they are providing the patient, in this particular case, the mice with one of the two drugs to see whether or not one of those two drugs has been able to support re exciting those neurons and therefore restore function, and then the final sentence goes further studies are needed to understand the safety and efficacy of the drug before it can be considered for human trials.

Bill Gasiamis 9:51
Of course, this is the difficult part. Is that we see a study like this, and as stroke survivors, we latch on. The hope that it’s going to be available very shortly, and that would not be able to take advantage of it. And unfortunately, it’s not going to be available for quite some time, because before it moves into human trials, the mice trials have to be done, and they have to be proven to be successful again and again, and then they need to replicate that in human trials.

Bill Gasiamis 10:19
And then from that, there is a number of years that need to pass before human trials can be proven affected, and then before a drug can be developed and then approved by all the people who need to approve it, and then made available to stroke survivors. And that’s, I suppose why I’m doing this video, is to then say, okay, so what do we do now? This stuff is not available.

Bill Gasiamis 10:42
It’s a great story for the future. But what do we do now? We need something now. Well, there are already some options that treat specifically those areas of the brain that are switched off, that are dormant and are needing support to come back online, and one of those interventions is perispinal etanercept, the controversial etanercept that lots of stroke survivors know about.

Bill Gasiamis 11:10
And I have spoken to two stroke survivors who have had results with etanercept with Dr tobernick, and the links of those interviews will be in the description of this particular video, and that’s what ataricep does. The problem with atanocept is that it is off label. That means that it’s being used in an area that is not approved for use, and usually a tennercept was being used for people who had rheumatoid arthritis to decrease inflammation in their joints. And it still is very effective and being used in that space.

Bill Gasiamis 11:46
And for some reason, it has moved around eight or nine years ago into being used for people who are experiencing stroke. And the main person who has been involved in that particular project is Dr tobinick from Florida, and as a result of that, he has been able to restore function in some, in many, many stroke survivors, and in some cases, also not been able to support stroke survivors.

Bill Gasiamis 12:13
And that’s my problem with the tennercept, is that when you go to receive a tennercept, you don’t know whether you’re an ideal candidate. So you have to pay you have to fork out the cash, you have to go there, do all the treatment, and then you may not get a result, and that’s the only way of knowing. And the reason being is because there’s not a method beforehand to determine whether or not somebody is the ideal candidate.

Bill Gasiamis 12:38
But it’s available right now, and there’s plenty of people that have had the opportunity to receive some injections of a tennercept, and they’ve had results. The other intervention is hyperbaric oxygen theory and of therapy. And I’ve interviewed two doctors who offer hyperbaric oxygen therapy, who have clinics in the United States, in Israel and in the United Arab Emirates.

Bill Gasiamis 13:02
And again, the difference being is that this particular protocol of hyperbaric oxygen therapy is five days a week for three months, I do believe. And it’s really, really expensive, but the difference is at least that they will be able to determine whether or not you have additional areas in the brain, those penumbras, those sleepy areas that are offline and can be rehabilitated, and as a result, can restore function.

Bill Gasiamis 13:33
That is the beautiful part of the method that they use for hyperbaric oxygen therapy is they determine whether somebody is a candidate or not, before they go to the expense to work out whether or not they can participate in the therapy with hyperbaric oxygen therapy. So the links to those two interviews are also going to be in the description. You can go and check out those interviews as well.

Bill Gasiamis 13:59
And the big challenge with etanercept and hyperbaric oxygen therapy is that they’re very, very expensive, and not many people can afford those particular treatments, especially since they’ve had a stroke, and then they’re not working after stroke. To come up with the funds to do that is really difficult when medical bills and everything else is piling up.

Bill Gasiamis 14:21
So there are a couple of the things that are already available to do what this drug is meant to do, and some of the challenges with getting access to those particular two interventions now the third one is repetitive transcranial magnetic stimulation, which is a non invasive brain stimulation technique using magnetic fields to activate specific brain areas.

Bill Gasiamis 14:49
How it helps is that it can promote plasticity and potentially improve motor function. And the way that it works is that the brain stimulation happens from the outside of the brain. With magnets and is placed on a targeted area, and it’s supposed to excite the neurons in that space and bring them back to life, if they are there to be rehabilitated, and that is supposed to help in rehabilitating people and supporting their brain to come back online.

Bill Gasiamis 15:17
Now I haven’t interviewed anyone who has done that particular therapy, and I don’t know much about it, but it is currently available, and some people might have already accessed it. And if you’re one of those people and you’ve had some results, or you haven’t had results, it’d be really interesting to speak to you about it and hear what you have to say.

Bill Gasiamis 15:37
Oh, and it’s important to mention that that therapy is specifically used for people who are recovering from aphasia and hemiparesis, and often it is done in rehab, in rehab in stroke hospitals in the early stages of their recovery. So they’re the three treatments that are currently available that are similar to the drug that these researchers at UCLA are trying to develop.

Bill Gasiamis 16:07
And one of the reasons why this study is occurring is because it’s probably backed by a pharmaceutical company, and they’re looking for the next thing to create to support stroke survivors. Because if they develop it, if they work out what it is, they can pay it into and then they can make a lot of money out of it, which is understandable and is necessary. But that is why there isn’t a lot of research being done in paraspinal etanercept, because etanercept is off label. It probably has fallen out of that where it is still patented, and as a result of that, there isn’t a ton of money to be made in that space.

Bill Gasiamis 16:48
So nobody’s pushing for research to be done in that area for stroke rehabilitation, when it’s already proven to be effective in arthritis. And as a result of that, they’re just running with what they have approval for, and it seems to be doing what it’s doing for arthritis, but it does create a situation where the only way what’s the word you can progress the science and the uses of a particular drug is to do what Dr. Tobinick is doing, and that opens him up for controversial comments from people who don’t get results because of the lack of being able to determine whether or not you’re a good candidate for a tennercept.

Bill Gasiamis 17:32
And then you get the other end where people do get great results, and then they rave about it. So that’s the challenge. Is that when there aren’t studies being funded to do the work to determine the efficacy of a particular intervention, well then it’s up to up to a few people to do that work, and they put themselves at great risk of scrutiny by people who have been disappointed they didn’t get the outcomes that they wanted, and by people who are skeptical as to whether or not etanercept works, there seems to be a lot of research that etanercept does work.

Bill Gasiamis 18:11
A lot of people reporting that it does work, and unfortunately, it is very expensive, and nobody else is doing the work to determine its efficacy in this space. So that brings me to the last thing. What’s the last thing that we can do to support bringing those sleepy, dormant parts of the brain back online, physical rehabilitation, as much physical rehabilitation as you can, whether you are hemiplegic, whether you’re in a wheelchair, whether your left arm or your left leg doesn’t work, or one of the other ones don’t work.

Bill Gasiamis 18:50
The more physical rehabilitation you can do, the more results you get, the more chances that you’ll be able to wake up some of those sleepy areas of the brain. I can’t emphasize it enough how important exercise is. After a stroke, doesn’t matter if it’s hard, doesn’t matter if you hate it doesn’t matter if it hurts. You have to find a way to become physically active, even if it’s sitting down in a wheelchair or standing up and holding on to a walker in any way, shape or form, physical rehabilitation is really, really important.

Bill Gasiamis 19:21
And if you can’t get access to it in a medical facility or in a rehabilitation facility, you have to find another way to get access to it. Now, what else can you do to support the brain? Well, you can stop smoking, you can stop drinking, and you can stop eating large amounts of carbohydrates, especially the carbohydrates of the kind that are wheat-based and from flour and sugars and all the carbs that cause high loads on the body and focus on a higher protein and vegetable diet.

Bill Gasiamis 20:00
And then avoid sodas and foods that are going to be inflammatory after a stroke. I hope you enjoyed this summary, this video, this breakdown of this new finding by the UCLA. Please share your thoughts and comments and feelings in the comments below. I will respond to all of them. Let’s start a conversation, and like, share, subscribe to the show, and I look forward to hearing from you, and I’ll see you on the next video.

The post This Drug Mimics Stroke Rehab – And It’s Real. Here’s What You Need to Know appeared first on Recovery After Stroke.

When it comes to preventing stroke, most people think of managing blood pressure or cholesterol. But there’s another major—and often silent—risk factor many overlook: atrial fibrillation, or AFib.

AFib is the most common type of heart arrhythmia, and it’s more than just an irregular heartbeat. It’s a condition that can significantly raise the risk of ischemic stroke, particularly if it’s undiagnosed or unmanaged.

In this article, we’ll explore what AFib is, how it increases stroke risk, and most importantly, what steps you can take to protect yourself or a loved one.

Atrial fibrillation is an irregular and often rapid heart rhythm that begins in the upper chambers (atria) of the heart. Instead of beating effectively, the atria quiver or “fibrillate,” which can cause blood to pool and form clots.

These clots can travel from the heart to the brain, leading to a stroke—specifically an ischemic stroke, which occurs when a blood vessel is blocked.

The link between atrial fib and stroke lies in the potential for blood clots to form in the heart. If a clot escapes and travels to the brain, it can block blood flow and oxygen—causing brain cells to die within minutes.

• People with AFib are five times more likely to suffer a stroke than those without the condition.
• One in four strokes in people over age 80 are attributed to AFib.
• AFib-related strokes are often more severe and carry a higher risk of long-term disability or death.

AFib can affect anyone, but the risk increases with:

• Age (especially over 65)
• High blood pressure
• Diabetes
• Heart disease or heart failure
• Sleep apnea
• Excessive alcohol consumption
• Family history of AFib

It’s also common for AFib to be asymptomatic. Some people feel palpitations or fatigue, while others don’t notice it at all—making regular checkups and heart monitoring essential.

While some people feel nothing at all, symptoms can include:

• Heart palpitations (fluttering or racing)
• Fatigue or weakness
• Dizziness or lightheadedness
• Chest discomfort
• Shortness of breath

If you’re experiencing any of these symptoms—or even subtle changes in how your heart feels—it’s worth discussing with your doctor.

Managing AFib typically involves:

• Blood thinners (anticoagulants) to reduce clot risk
• Rate and rhythm control medications
• Lifestyle changes (diet, exercise, alcohol moderation)
• Procedures like cardioversion or ablation in some cases

The goal is to prevent clot formation and restore normal heart rhythm, significantly reducing the chance of a stroke.

1. Get Diagnosed Early
   Many people discover they have AFib after a stroke. Catching it early can save your life.
2. Stick to Your Medications
   Blood thinners are critical in reducing the risk of stroke in people with AFib.
3. Monitor Your Heart Regularly
   Wearable ECG devices or even smartwatches can help detect irregular rhythms.
4. Cut Back on Alcohol
   Heavy drinking can trigger AFib episodes and increase stroke risk.
5. Address Lifestyle Factors
   Manage high blood pressure, quit smoking, stay active, and eat a heart-healthy diet.

Understanding the link between atrial fib and stroke empowers you to take action. Whether you’re living with AFib or supporting someone who is, the path to prevention starts with awareness, medical guidance, and lifestyle change.

Atrial fibrillation may be common, but it doesn’t have to lead to stroke. With early detection and the right treatment plan, it’s absolutely possible to live a long, full, and healthy life.

If you’re a stroke survivor or navigating AFib, check out our Recovery After Stroke community, where we share survivor stories, medical insights, and support tools for recovery and prevention.

Jeff Ryberg’s stroke was caused by AFib and alcohol. His inspiring recovery offers hope, healing, and lessons for stroke survivors everywhere.

Jeff’s Instagram
Support The Recovery After Stroke Podcast On Patreon

Highlights:

00:00 Jeff’s Introduction and Background
01:56 Jeff’s Stroke Experience
04:17 Atrial Fibrillation and Alcohol Use
09:35 Jeff’s Transformation and Recovery
13:46 How a Stroke Saved My Life: A Listener’s Powerful Reflection
23:44 Challenges and Support in Recovery
35:49 Post-Traumatic Growth: Finding Meaning After the Storm
42:05 Recovery, Friendship, and the Two-Hour Window
58:42 Post-Stroke Reflections and Advice

Transcript:

Bill Gasiamis 0:00
Hello everyone, and welcome to Recovery After Stroke, I’m so grateful you decided to join me today, whether you’re a stroke survivor, a caregiver or simply someone seeking to understand the recovery journey. On a deeper level, I wanted to thank you for being here. Your presence helps build this incredible community, one story, one episode, one connection at a time. More and more people are now discovering this podcast while still in hospital, sometimes just days after having had a stroke.

Bill Gasiamis 0:34
That kind of early connection is exactly what I needed when I had my own stroke back in 2012 and it’s why I started this show in the first place. It is also what inspired me to write the book, The Unexpected Way That A Stroke Became The Best Thing That Happened. If you’re looking for more insights into navigating stroke recovery, not just physically, but emotionally and mentally. I invite you to take a look and check it out. It’s written from the heart, and it’s there to support you wherever you are on your journey.

Bill Gasiamis 1:07
Today, my guest is Jeff Ryberg, and his story is a powerful one. Jeff had a stroke at 55 caused by Atrial Fibrillation and alcohol related heart failure, but thanks to timing, medical intervention and a moment of clarity that changed everything. He not only survived, he transformed. In this episode, Jeff talks openly about his long history with alcohol, the signs he missed, the life threatening impact of untreated AFib and what it looked like to turn it all around. His journey is one of redemption, healing and purpose, and I think it will resonate deeply with many of you.

Bill Gasiamis 1:49
Let’s dive in. Jeff Ryberg, welcome to the podcast.

Jeff Ryberg 1:54
Thank you for having me. Thanks, Bill. Appreciate it.

Bill Gasiamis 1:56
Tell me a little bit about what happened to you, Jeff.

Jeff Ryberg 2:01
So, about two and a half years ago, I was feeling kind of poorly, and for a couple weeks, had been complaining about being tired, and I went to the doctor, I think, the Friday before, I got sick, and they gave me some medicine to get my AFib under control, had some AFib issues.

Jeff Ryberg 2:23
Atrial Fibrillation.

Jeff Ryberg 2:25
Atrial Fibrillation, right. So I went into the doctor and came home, I went to bed. Woke up early in the morning, my fiance is a nurse, and I said “Hey, I’m not feeling good.” And anyway, long story short, the ambulance came pick me up, took me to the hospital. My heart was failing, I had like a 15% to 20% on the left side. So I was in, had cardiopathy. Heart failure was kicking in, and they had me on pretty high blood thinners, heparin was involved, and doing all these things. But a day had passed, and they had gotten a lot of oxygen and things like that.

Jeff Ryberg 3:10
So the next day, my son was in the room with my oldest son, is 33 and I had to go to use the restroom, and he got him up at a bed, and he said “How come you’re talking so funny. What’s going on with this?” And I had a stroke, in his arms as he was taken to the bathroom. And this is where things get a little bit interesting. Is that it I had it in the hospital, luckily enough, and at 55 they said I was really young to have a stroke, which I thought I was old at the time, but had the had a stroke in his arms.

Jeff Ryberg 3:49
What became kind of like, like to say a miracle was that the specialist that was in the whole area for the University of Washington happened to be in the hospital on my floor just a couple doors down, working with somebody else. So within 45 minutes, MRI, CT scan, and then did a thrombectomy, two blood clots, one each side of my brain, and got them out.

Jeff Ryberg 4:17
So that led me to, I’m here with you now to talk about my experience and the what led up to that, and how fortunate and lucky to be in that situation, that I was to have that procedure, and we can talk more about that, but it was a very fortunate position. But every day I’m thankful to to be in obviously.

Bill Gasiamis 4:42
Yeah, it’s a pretty intense situation. So tell me about the atrial fibrillation history. When did you discover that that was a thing and that you need to be managed?

Jeff Ryberg 4:54
Well, I think, Bill had been going on for quite a while, so I think over the years, I have a, obviously, had a drinking problem, and that’s one of the things that would initially start the AFib. Would, I’d have like, a heavy night of drinking, and then my heart would race, and I would just probably pour more on top of and then all of a sudden, you know, I wouldn’t race anymore, and it wouldn’t feel at it. So I’d been to the hospital a couple times over the years for racing hard, and I never really thought much of it.

Jeff Ryberg 5:24
And then eventually, I think, as you kind of put the pieces together of this puzzle here is that atrial fibrillation probably was from alcohol use, the coronapathy from alcohol use. And one of the things that I tell people as I tell the story, is that when you’re in the hospital and someone asks you, how many drinks a day do you have? And I said to the cardiologist I have, I don’t know, two or three. And he said, are those doubles or triples? And I said, I don’t know, maybe. So you’re probably 10 to 15. And I said “Wow, that’s pretty good, probably pretty close.”

Jeff Ryberg 6:00
And as you drink over the years, you just get used to 10 to 15. That sounds like a lot, but over the course of a night, you know, you just kind of is what it is. So I think atrial fibrillation led to my situation that I’m in, or I was in over the years, and since it’s been two and a half years, I haven’t had any more atrial fibulation. I’m down about 40 pounds. I have a glass of wine here and there, or, you know, but it’s not more than half one or one here and there. So it’s there’s no alcohol. I’m a designated driver now, which never would have happened about three years ago.

Jeff Ryberg 6:46
I can promise you that, but I think that’s what led to it. And I think as the more people I talk to, and the more things I read online, and the cardiologist, multiple cardiologists I’ve had have all said the same thing, one of the things that was interesting was the I tested positive for the gene for cardiomyopathy. My dad had it, and so they thought that I would never really come out of the cardiopathy woods. As far as a heart was weakened. And I maybe jump ahead too much here, but as is, the years have gone on.

Jeff Ryberg 7:21
My cardiomyopathy is in full remission. I don’t have any issues with my heart any longer. It’s back to beating at 50% – 55% I don’t have any of the blood blood pressure medicine, blood thinners, all of that has been moved to the side for at least for right now, but I think it’s a matter of making the right decisions, eating correctly, losing the weight, cutting out the alcohol, like I said, making good decisions. But to answer your question, the AFib is probably was there for a lot, much longer time than I thought.

Bill Gasiamis 7:59
The war was behind the excessive drinking of alcohol? Was there a reason for it? Is it something that you just always did, kept doing? Was it to change your the way you felt, or what was behind it?

Jeff Ryberg 8:18
Yeah, I think it was self-medicating for anxiety issues, I think. I’m a salesperson for a long, long time, for 30 years, and so a high functioning alcoholic is what I would probably call myself, and most of my people I do stuff with, is it just alcoholic. Sounds like a different person, but a functioning alcoholic means you drink a lot and you’re able to perform. And I think a lot of it, you just get stressed out, so you just pour alcohol on it to help, you know, your situation that you’re in. And that’s kind of that was that for a long, long time, 30 years, probably.

Bill Gasiamis 8:53
Just take the edge off. Feels like it takes the edge off.

Jeff Ryberg 9:00
Yeah, I just, I don’t take a lot of medicine. Obviously, as you hear my story, as I slowly weaned myself off of medicine, I just not a big fan of how I felt on some of medicines. And so same with, you know, taking pills to calm myself down, that’s not really what I did. So I would just pour booze on it, have a couple drinks. Things are great, but that’s not the way to go. Obviously, that had a huge effect on my life and it, you know, change the way you view, you know, getting a second chance is a big deal.

Bill Gasiamis 9:35
Let’s take a moment to reflect on what Jeff has shared so far from a hidden heart condition and years of heavy drinking to a sudden stroke that changed everything. This experience is a reminder of how quickly things can unravel and how powerfully they can rebuild. If this podcast has brought you hope or helped you feel understood, one way you can support it is by listening through. The ads, it may seem like a small gesture, but it helps cover production costs and allows me to keep sharing stories like Jeff’s.

Bill Gasiamis 10:08
And if you want to go even further, consider joining us on Patreon, at patreon.com/recoveryafterstroke. Your support helps bring these conversations to those who need them most, especially in those early, uncertain days of recovery. Now let’s get back to Jeff’s story and hear how he transformed his life after stroke, one intentional step at a time when I’ve spoken to other people who have had have been alcoholics and have drank excessively and try to give up a couple of times.

Bill Gasiamis 10:42
One of the challenges they have is that they’ll go through the process of slowing down the amount of alcohol they drink, but then these emotions come to the surface that they’ve never dealt with before, and that often makes it difficult for the alcohol consumption to stop, because then that was the whole reason they were drinking. And they don’t have a strategy to deal with the emotional side of not drinking alcohol, the stuff that’s coming up that they’ve repressed suppressed for years.

Bill Gasiamis 11:13
Because they just didn’t realize that one of the things they were going to need to do was seek counsel, seek a counselor and get some support. Like that. Did you in your 30 years, had ever been something that came into your awareness that I should stop this, and then you’ve put some steps in place to stop but then found yourself drinking again?

Jeff Ryberg 11:36
No, I think I just always thought I could control it. I thought I could just kind of work myself through the situation. So counseling was had been married before, so the counseling did wasn’t for my drinking. I think people would always say “Hey, you drink too much.” And then he just kind of dismiss it like it’s not a big deal. But when you have kids, my daughter is 20 and a couple years she came to me and said “Hey” she sat in my office and said “Could you please, please stop drinking? Please stop doing this. I don’t want to go through this again.”

Jeff Ryberg 12:07
So when you you put in a situation like that, and you’re afraid, I think people that in my situation, and I would tell anybody that’s listening, is that when you’re afraid, you’ll stop drinking. And when you get really get afraid to have another stroke or multiple strokes, or you’re in that situation, you will stop, and you should stop. And that’s what happened to me, is, I think if this didn’t happen to me, Bill, if I didn’t, it saved my life. And people say, you hear quite a bit, is it?

Jeff Ryberg 12:36
It probably saved my life, because I probably would still be drinking right now, you and I wouldn’t probably be talking. I That’s a Friday afternoon. I’d probably be at some place having a couple cocktails and but I think the what happened to me was I got a helmet check and someone said “Hey, we need to pay attention to what’s important to you.” And what’s important is the people around you, your son that was in a room with you, your daughter that said, Please, and your other son. I mean, there’s, there’s so many signals and signs that people just ignore.

Jeff Ryberg 13:03
And one of the messages I wanted to say was, I want to get to the people before they get to my situation. How do I get to someone to say, hey, look, you were you given opportunities, and this is one, I got another one. This is another chance. And it’s an interesting because, you know, some of the people you try to talk to don’t get it. They hear you talking, they’re not listening to you. And I think my message is to get to those people, or my plan is to those folks, and I’m listening.

Bill Gasiamis 13:35
It’s a good thing to do. Are you on YouTube, by any chance, have you been commenting on my videos recently?

Jeff Ryberg 13:46
No, I haven’t been. You know, what I had, yeah, I don’t know I was on there. We looked at them. I watched, we were, I was taking, we’re have a place over in Eastern Washington, and we were taking a drive, and we were listening to a couple of them. There was one of them that was about alcohol that we listen to, and I don’t know if my fiance commented on it or not she may have.

Bill Gasiamis 14:06
There’s a comment by somebody on one of my videos. What stroke survivors wish they knew is what the video is called, and what it is is about a 9 minute video. And I asked the whole bunch of stroke survivors what they wish they knew about stroke, what when they were going through it that they were never told. Anyhow, the person who commented was WordsmithWorks3541, I don’t know if it’s you or not.

Jeff Ryberg 14:33
No.

Bill Gasiamis 14:33
Okay, but have a listen to this comment. This is I just read it five minutes before we sat down to record this. And now have a listen to what they’re saying “Prior to my stroke.” Okay, this is definitely not you “A drug an alcohol abuser. I had a horrible diet, was a fat load, and was losing my family, while I understand what Bill is saying about losing the old you. So I’m talking about letting go of that old person prior to stroke, and kind of evolving it and changing it turn it into a more improved version, while that person understands what I’m saying about that…

Bill Gasiamis 15:09
The old me.” he says “Caused my stroke, but ironically, my stroke saved my life. I don’t miss the old me that said I was overcome with crushing guilt about what I did to myself and my family three years later, and things are lighter and light years better. Thank God.” So, unbelievable.

Jeff Ryberg 15:35
Yeah, that’s, that is a message that I think you don’t get until it happens to you and just the absolute miracle of how it happened. It could’ve happened, if you think about it, what if I wasn’t in the hospital? What if wasn’t in my son, what if the specialist wasn’t there to do a thrown back to me, which is extremely rare, to do it anyways, to do two of them, and come out of with very little or no side effects. I, Bill, when I woke up in the recovery, they had said I had a stroke. And I said, I don’t have, I didn’t have a stroke.

Jeff Ryberg 16:17
And they said, you did. And they kept making me smile, and they kept asking what time it is and can you know what date it is? And luckily, there was a clock right behind the nurse’s head. Every time she’d asked me, was super easy, so I’d say, yeah, it’s June 23 at whenever.

Jeff Ryberg 16:30
So I was cheating, but I didn’t even know how to stroke, and I had gone to the neurologist two months later, and they wanted to check me out. And the lady said “Hey, here’s, let me show you your brain on the scan.” I said “Great, and she was here where the damage is.” And I said “What damage? I don’t have any damage.”

Jeff Ryberg 16:49
And she said “Right here, this white stuff, right here, is the damage from your stroke, and to that, to this.” I mean, I didn’t have no idea. I had no idea had gone three months after in recovery, I mean, I was fine. I mean, I on occasion, a couple little things here and there. But for the most part, I got extremely lucky to come out of this way did in the hospital for a week, six days, a few days in an intensive care.

Jeff Ryberg 17:15
But to come out the way I did, you know, was extremely, extremely, extremely lucky. Yeah, a miracle, if you want to call that. But yeah, it was, I can’t, it’s hard to describe.

Bill Gasiamis 17:33
So the heart condition, the genetic predisposition for cardiomyopathy, and then that has settled down, though. So it was an issue has settled down. Has your heart function improved increased? Is that what you’re talking about a little earlier?

Jeff Ryberg 17:53
Yeah, yes, it is. I don’t have any AFib symptoms or cardiomyopathy symptoms. It had completely gone to remission, the X-Rays, or the MRI, I did after the fact I see that the cardiologist once a year, I won’t see him until probably June. So my three anniversary is June 22 and it’s interesting too. As I go, do the all the reading I do online, which is too much, too much research. You know, stroke survivors aren’t supposed to live this long it could. I mean, it depends what you read. We’re not going to make it three years, whatever, but I spent too much time doing that.

Jeff Ryberg 18:31
And then that stress myself out. And then my thing is not knowing specifically what happened. I think we know what happened to me. I think we know that drinking probably caused this. Maybe it was a virus, maybe it was all these things, but not knowing is the hardest part. I say to my friends all the time, if you had broken your leg and you had to go in and get a cast, you knew that you broke your leg.

Jeff Ryberg 18:50
But when we have a stroke, when you had yours, I had mine, I don’t know exactly what caused it, so I don’t every time I go and get a sniffle or I sneeze, I’m like “Oh, is this going to be another stroke.” So that’s hard part. And do it research, research on.

Bill Gasiamis 19:07
Yeah, the common thing of what they call a cryptogenic stroke, a stroke that occurred that people don’t understand what the cause was, is “will it happen again? Why did it happen? Is this another stroke? Etcetera.” and what it requires is a little bit of vigilance, not over vigilance, but vigilance so that you do take the necessary steps to get yourself to hospital, to get yourself checked out, even if it’s a false alarm, because I had three bleeds from the same blood vessel.

Bill Gasiamis 19:41
And that means I went to hospital three times in two and a half years where it was definitely bleeding, but in amongst that time, I went about another 10 or more times where it definitely wasn’t bleeding, but we thought that it was. And it’s like, what am I going to do? I’m not going to die wondering. I’m definitely going to get myself to a medical professional where my history is, where they know who I am. And I’m going to go there and I’m going to say “Sorry, guys. I know I’m back again, but this thing in my head hasn’t been resolved. And, yeah, it might be bleeding again today…

Bill Gasiamis 20:25
And I think this is best place for me. You need to do a scan on my head.” And that was it, that would do the scan, and we would work it out, and I think it’s like, it’s appropriate to be vigilant in this scenario, and to think about, is this going to mean that, etc, get to know your body, understand what it’s like, get some feedback from medical professional, a scan, whatever, to ease your concern and to prove that that wasn’t a situation you needed to worry about. And then go about, get back to going about your life now.

Bill Gasiamis 20:59
You’ve made some massive steps, all the things that you’ve done, lost weight, stopped drinking, etc, that has significantly decreased your risk of stroke, like dramatically, the numbers are unbelievably in your favor. Now your cardiomyopathy has settled. That’s because the there’s no inflammation from the alcohol that causes inflammation in the body, let alone in an organ that’s susceptible to it, right?

Bill Gasiamis 21:28
Because you have a genetic condition, so that’s amazing. So everything you’re doing is on the right track now with the alcohol, I wonder, did you have a did you go cold turkey? Did you slowly stop decreasing it? How did that go? What was it like to experience that?

Jeff Ryberg 21:47
Well, so I quit cold turkey. They had me on a watch. That guy’s gonna have seizures from quit drinking at the time. For someone like me, I just stopped. And I didn’t drink for a year and a half or two years before, I had a sip of some anything, and it was fine. I had no problem with stopping it. Didn’t make me have any kind of nothing. I didn’t sweat, didn’t have any issues like that. So I was blessed to not have any issues that came up with that. But I think just the the fear of the unknown and my the doctor that I had my dad had as well.

Jeff Ryberg 22:25
I had him as had the same doctor, and he had said to me, and I can see him saying, If you drink again, you’re going to die of a stroke or another heart failure if you drink again. So this is a specialist, one of the top guys, and so I didn’t, because I was afraid and I didn’t I wanted to stop, I wanted to change my life. And I think, yeah, most people will fall back off the wagon and get back on a drink again. That’s just not going to happen. It’s one of those things where, like I said “I will have a half a sip of this or that.” And it’s almost like I’m in the game.

Jeff Ryberg 22:59
I get a pinch hit, or I get a pinch run, and that just makes me feeling so part of the team, and that’s it for me, and that’s fine. That’s all I need. And that’s rare as well, where most people that are card carrying a members, they’re not going to be able to, you know, have just the one sip and call it good. But, you know, great. I mean, I do have that ability.

Bill Gasiamis 22:59
Did you replace it with something? So a lot of people will say to me, when they’ve quit something that they were will call it addicted to, or they have a tendency for addictions, that kind of stuff. They replaced it, like with ridiculous gym sessions, and they went to the gym 15 times the first week, etc. Well, how did you go?

Jeff Ryberg 23:43
But, man, that’s so funny, I said that. So, I love to gamble a little bit. So when you start to pick up other habits, I don’t gamble a lot, but we have, you know, a little gambling ground here, so I love doing that. But impulsively, I found that after the stroke, man, if I want to buy it, I’m going to buy it, or if I see something, I’m on it. If I want to, you know, my ability to slow down, my those kind of things, have just gone in the ditch. And so my kids and everyone thinks it’s so funny. All the clothes, I gotta buy new stuff.

Jeff Ryberg 24:17
So we just start buying stuff, or gambling or whatever I’m going to do. So it absolutely 100% I gave up booze for other things, but it’s all fun stuff. It’s nothing that’s going to cause me troubles. One of the things I thought was interesting was that I know about you, but when people say all time”Hey, you look fine, that you don’t have any issues. Got nothing wrong with you.” but at the end of the day, man, I get tired at 10 o’clock, 9 o’clock, I’m when I’m done, I’m done, or if I go, I don’t know about you, you go to the mall.

Jeff Ryberg 24:51
And it’s just, there’s just, like, there’s a million lights going off, and you’re like “Where in the hell right?” It’s just, and you’re not, you’re normal, but you’re not. And so you try to put on this facade that, hey, everything’s great, but at the end of the day, you’re kind of like, Hey, I’m still not, I’m not bad in 1000 right now, I’m in, I’m trying, but it’s taken a lot more, you know, effort than it used to. Yeah, that’s not, you’re the same way.

Bill Gasiamis 25:17
Yeah, they’re very common stroke symptoms, right. So afterwards, fatigue, over stimulation, the lighting, fluorescent lighting in malls, etc, just completely change the way that your brain experiences that, and the noise, the people, just all the stuff going on. It’s a lot for your because it all happens through your eyes. There’s a lot for your eyes to process and then your brain to deal with when it’s also trying to heal from the injury that it experienced from the two clots that went into your brain, right?

Bill Gasiamis 25:52
So that’s what that is, and the fatigue is telling you, like you said, when you’re done, you’re done. That’s how I am. Like, it doesn’t matter what’s on the to do this. It doesn’t matter how urgent they are. There is just a time in the day when I hit the wall, I’ve hit the wall, and there’s no going over it, under it, around it, there’s just stopping at the wall and relaxing and doing whatever I have to do, and then reassessing the next day, and gathering myself, and then getting the tasks done that was supposed to be done the day before, in the new day.

Bill Gasiamis 26:28
And then moving on and just playing that game again and see where it end up at the end of the night, I have nights where eight o’clock in the evening I am completely gone and I need to be in bed. And then I have nights where I can go till, well, I don’t feel like sleeping until 11:30 or 12 o’clock in night. And it, I don’t really know, I can’t predict it. So just go with the flow. The hardest part about going to bed late is, if I don’t get enough sleep during the night, is waking up and being a little bit groggy.

Bill Gasiamis 26:59
My left leg is, you know, struggles to wake up. It takes a bit longer to wake up. My left arm, same thing. So that’s the only risk that I have, is the next day, is if I have a late night after feeling energetic, I pay for it the following day. So there’s no, yeah, you can’t interest there’s no balance. It’s just like you have a certain number of hours of energy, you might sneak another one in on today, but you’re not going to have that tomorrow.

Jeff Ryberg 27:34
That is identical. That is exactly my left side saying it would. It takes a while to get it going, but once I get rolling, but I’ll shut down at dinner if we’re at I was some friends at 9 o’clock, or I can go to 11 or 12 and I’m not tired. Same kind of deal. So it’s interesting that you’re have that same was yours on the right side or left side?

Bill Gasiamis 27:53
Mine was right side.

Jeff Ryberg 27:55
Yeah, same, yeah. The bigger one was on the right for me. But my that was had prowess on the left. So, when I had the stroke, my left side was paralyzed, and then when it came out, it was gone, which is, I can’t, it’s unusual. I was watching the Jamie Fox special. If you’ve seen that.

Bill Gasiamis 28:21
Haven’t seen special. He had some kind of a stroke, yeah.

Jeff Ryberg 28:24
Yeah, that’s interesting one. So I watched that, and his was very similar toward the end where he was saying something about he didn’t realize he had one. There’s no way he had one. I didn’t, you know, it’s similar to my situation, where I was like “There’s no way I had one there.” You can’t tell you had one, but his, it’s an interesting to hear him talk about his situation. Yeah, very, very similar to yours as well.

Bill Gasiamis 28:50
So what happened with work? How did you navigate that? Was there a stop work? Was there a transition back?

Jeff Ryberg 29:00
Well, so again, I’m probably unique. I probably took about a week off from work, which, knowing what I know now, I probably would have taken a lot more, but my job is very important to me, and I don’t take a lot of time off. But so for that’s why, when I went back into to the neurologist and said there’s damage. I was like, I don’t know what you’re talking about. There’s I don’t know what you and there’s no damage.

Jeff Ryberg 29:26
But sure enough, there definitely is. And so it was about a week, maybe a week and a half, and I was still kind of doing emails. I was in the hospital, I didn’t work at all, technically, probably two weeks overall. But that was it, that was about it. And then I’m back on the kept me busy, but I think maybe that’s what helped my brain keep going and stimulating, whatever it was. But it was, yeah, unusual, very unusual, to have that kind of surgery, and I’m just bounce right back. I said just was strange.

Bill Gasiamis 30:01
When you got back to work, were you full time? Back to normal routine, the whole time?.

Jeff Ryberg 30:08
Full time, yeah, I work. I get to work from home. So that helped a lot. So my customer, I didn’t go see for a while, but for most time, I was just working from home and making phone calls, and no one really would know the difference. I think my work knew I was had a stroke, but, yeah, there was no special, you know, help on that side. Just jump right back in. And I think again, that probably helped me mentally to just prepare that I was going to be fine. But that didn’t take me to probably a year later.

Jeff Ryberg 30:42
I kind of realized as I read through what had happened to me how serious this was. I mean, even when I go back now that some of the reports on my charts weren’t there until like, six months ago, and then your heart rate’s about 50 when you’re reading it, and by the time you’re done, it’s about 100 you got, holy crap. That’s what happened to me. That’s where I was, right. That’s the program that was going on. And the, you know, having two sides and the doctor, all the things that were going on was a lot, and it’s eye opening. That’s when I kind of got more involved.

Jeff Ryberg 31:13
I do a couple of stroke groups a month, which I didn’t think was going to be for me. And my fiance said “Jeff, I think this would be good for you to go and talk to these people.” But I think it’s interesting that I didn’t know how much I could help them or how much they could help me, but at the end of the day, it is amazing the give and take on both sides, how much they help me and how much I’d like to help them.

Jeff Ryberg 31:37
And just listen to their stories. And what’s, you know, all the things that they’ve done. So it’s been, again, it’s one of those things where it changed. It changed my life. I wouldn’t be getting to meet the people I get to meet with. And, you know, it’s a treat.

Jeff Ryberg 32:14
Silver lining.

Jeff Ryberg 31:55
Yeah, one of the things I wanted to share how much more time we got, but I wanted to, want to show, I wanted to share one, other one of these, I like to say a miracle. I wasn’t sure why it happened, but I was at a football game, and this guy came. I was sitting kind of by myself in this huge stadium, and this guy came walking up the bleachers and not up to stepped up the bleachers, and he sat down right next to me, and he said “How you doing?” I said “Great.” And he said “You know, these teams?” I said “Yeah, this my neighbor’s son plays for one of the teams.”

Jeff Ryberg 32:31
And turned out he was a pastor at a local community or somewhere around their town. And we talked about, you know, our kids. And I say, I learned my lesson about, you know, calming down, I had a medical issue. And he said, I know you did. And he said, I know you were given a second chance to make an impact. And I don’t know who this guy was, I’ve never met him before my life. And he said, You’re given a second chance to make an impact. And I, we talked another few minutes. He got up and left, and he came back, and he put his hand.

Jeff Ryberg 32:31
He said “I just want you to know you need to make an impact.” And he left. So my thing that I would want to share is that something, someone wants me to do something and reach to people to say, you can do this, if I can do it, and I can recover and I can get through with very little or no effects to this, and you can quit drinking, and you just be a better person. As far as the thing, the choice that you make, anybody can do it. And so anyway, I thought I shared that with you and those listening. I think it’s a miracle. It really is.

Bill Gasiamis 33:38
It’s just, my head can’t wrap itself around that type of a situation. You go and you sit down somewhere, like it’s almost random, and you’ve been through all this stuff, and then there’s this person, and then they say these words that you’ve never heard another human being in your life say to you, and they seem to have an insight into your soul that they just possibly can’t and then they just lay down some wisdom on you. And then they just get up and they just disappear like it’s.

Jeff Ryberg 34:11
Well, he, you know, he sent me a, I think, on my phone. He wanted to send me something to read. If you don’t mind, I can just take a minute to read this. But I think it’s important that somebody that doesn’t know me, that just came and tracked me down and sat next to me, could have said, anyway, there was nobody around me for 50 feet. But he found me out, sat down next to me and dropped this on me so somebody was trying to get my attention. And he said it says “A life that matters is ready or not someday it will all come to an end…

Jeff Ryberg 34:48
There will be no more sunrises, no minutes, no hours or days. All things you collected are whether treasured or forgotten, will pass to someone else. Your wealth, fame and temporal power will shrivel to irrelevance. It will not matter, what you owned or what you’re owed, your grudges, your resentments, frustrations, jealousness, will finally disappear. So to where your hopes, ambitions, plans to do this will expire. The wins and losses and once seemed important will fade away. It won’t matter where you came from…

Jeff Ryberg 35:17
It won’t matter whether you were beautiful or brilliant, even in your gender, your skin color or your will be irrelevant. So what will matter? What will matter is that, not that, not what you brought, but what you built, not what you got, but what you gave. What will matter will not be your success, but your significance. What will matter is not what you learned but what you taught. What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered, encourage others to emulate your example. What will matter is not your competence but your character…

Jeff Ryberg 35:49
What will matter is not how many people you knew, but how many people felt the lasting loss when you’re gone. What will matter is not your memories, but what memories that the one, but will the memories that live on for those who loved you, what will matter is not how long you’ll be remembered, but for what living a life that matters doesn’t happen by accident.” Now this is what I was believing in before this person sat down next to me, but to hear somebody send that to me just randomly is, is not by accident.

Jeff Ryberg 36:22
And I was raised religious, and I believe in a lot of things, but when things like that happen is, I think, almost miracle type stuff that got my attention, and that’s why I’m here and one of my friends from the stroke group. Scott said, Hey, Jeff, this unit and Bill would hit it off. And I think this is where you need to get your message out to so.

Bill Gasiamis 36:48
I agree, I agree 100% I love hearing that story. Let me lay something down your way as well. Let me give you another bit of an insight. So you’ve heard of post traumatic stress disorder. We all have, most people know that what it is, it comes from many different events in life. What’s traumatic for one person may not be traumatic for another, but we hear about it, spoken with veterans a lot, but it doesn’t. You don’t have to have been a veteran to experience post traumatic growth. It could be just anything that you experience trauma from, right?

Bill Gasiamis 37:23
So anyway, there’s these two guys around the late 1990s doing some work in the United States, a guy called Richard Tedeschi and Lawrence Calhoun. They’re researchers, and they are into psychology and all that kind of stuff. And they coined a term called Post Traumatic Growth. So post traumatic growth. And post traumatic growth is something that people experience at the same time that they may be experiencing PTSD post traumatic stress disorder, and it happens together and in and then not one is not separate from the other. They kind of coexist.

Bill Gasiamis 38:04
And post traumatic growth occurs after a PTSD type event, like a really dramatic event, a stroke, what you saw on the battlefield, a car collision, anything like that. Doesn’t matter what it is. And these are the things in for people to be experiencing post traumatic growth, they have to kind of tick the boxes in these five domains, and those five domains are, number one, tell me if you tick these a new appreciation for life.

Jeff Ryberg 38:33
Yep, 100%

Bill Gasiamis 38:36
Stronger, more meaningful connections with people, increased empathy and greater sense of compassion, even towards those who have gone through something, some similar struggles. In other words, the way you relate to others has improved.

Jeff Ryberg 38:51
Absolutely 100% Yeah.

Bill Gasiamis 38:52
Tick 2 out of 2, then personal strength, a recognition of inner resilience and the realization that one can endure more than previously thought. Leading to increased confidence in handling future challenges.

Jeff Ryberg 39:07
100% Yeah, absolutely.

Bill Gasiamis 39:09
Tick 3 out of 3. Number Four new possibilities, the discovery of new paths, interests or life directions that may not have been considered before the traumatic event, such as career change, personal projects or advocacy work.

Jeff Ryberg 39:25
And 100% Yeah, absolutely, it’s just crazy.

Bill Gasiamis 39:29
4 out of 4. The final one, the fifth domain of post traumatic growth, spiritual or existential change, a deepened spiritual connection or a shift in beliefs about meaning and purpose in life, which may or may not be tied to religious faith.

Jeff Ryberg 39:45
Yeah, 100% Yeah. All of them, without a doubt, it’s, I don’t wish anybody to have a stroke, but to be able to get a the opportunity to appreciate. The things that I didn’t probably before that was right in front of you. I like to call it a helmet check, and I got a couple of them, pretty good ones, and someone wants me to get a second chance at doing something, and I will not waste it.

Bill Gasiamis 40:15
Yeah.

Jeff Ryberg 40:17
It’s definitely, yeah. Definitely changed.

Bill Gasiamis 40:25
And tell me about the family unit there, who lives at your place?

Jeff Ryberg 40:29
Yes, yeah, I’ve got three, three kids, two boys and a girl, the two older ones, 34, almost 34 and 31 and then daughter’s 20, and she’s graduating this year from college. So, yeah, it’s just my fiance and her two kids live here, and then my other ones kind of live outside the house.

Bill Gasiamis 41:00
Was your fiance on the scene back then a couple of years ago, when all that was happening was she around? Did she know the old version of you?

Jeff Ryberg 41:09
Yeah, it’s funny. So definitely, she’s a NICU nurse. So she’s used to take care of the little babies, which is perfect for me. I worked out fantastic. So she knew. I mean, she just had me, you know, called 911 quickly, and she knows that there’s something different that she kind of goes through and says, he’s especially, we’ve got to leave and go someplace. She’s the first ones, hey, let’s, you know, get you out of here. I know you’re tired or whatever. So she’s picked up on a lot of those things.

Jeff Ryberg 41:37
I’m a really bad patient. I’ll be honest with it, she would if she was here to tell you that I don’t, I don’t take good direction, I don’t take medicine very well. I don’t, I don’t follow the rules very well on some of those things. But I think maybe that’s helped me survive this thing, right as I kind of do it my own way, a little bit. But yeah, she’s been there every step of the way, and I’m absolute another blessing, another absolute blessing that I had the her to be there to help me get through this, because it’s not easy for the caregivers.

Jeff Ryberg 42:05
I gotta tell you, as I watch some of the other folks, that they’re just as into it like we are. I mean, we had the we had the experience, but they’re experiencing it with us. And I’m not sure which one’s harder, because she’s gotta put up with a lot traveling, having to go someplace, we miss out a lot of things, because it’s difficult to kind of do the some of those things that I used to do, but we’re getting there. It’s a process. I got the opportunity I work a couple times a week, and that helps we do that together, and keeps the, you know, activity going, and, yeah, very, very fortunate.

Jeff Ryberg 42:38
So the quality of life my home life is, is very lucky to have that as well. A lot of folks helping me. And when I told people I was going to do this, they’re waiting to get to see it, or figure out how to watch it, or whatever. So there’s, there’ll be a cast of 1000, I think, trying to see what this looks like.

Bill Gasiamis 42:56
When you when you were drinking, were you drinking alone, or did you have a team of people that you did the drinking with?

Jeff Ryberg 43:03
Kind of both, I think towards more towards the end, I was probably by myself, and a lot of people would say, I don’t drink alone, but I had no problem with that. I think particularly towards the end and you stop, I wouldn’t even count. I’d count to 10 or 12. Just mix a drink with vodka, and I would just sit there, and I was fine. I just would, I was never really drunk.

Jeff Ryberg 43:24
Most people would say that never saw me drink so much, I was drunk. But I would definitely in both situations with my friends, you know, we’d like to go to the watch the games and do whatever, but mostly it was kind of a combination of both, unfortunately.

Bill Gasiamis 43:41
With your friends. What’s that like now? A lot of stroke survivors who have stopped drinking struggle with reconnecting with friends, because the whole premise around the friendship was, let’s go and have a drink, or let’s go and get drunk, or and now that person who doesn’t drink anymore, it makes it uncomfortable just because they say they don’t drink alcohol, for the rest of the people that drink alcohol, and it changes the dynamic. How did you find the dynamic with your friends change or stay the same?

Jeff Ryberg 44:13
Yeah, they’re all been pretty good to me. It’s more me than it is that side of it. They have all been very help. They wouldn’t let me have drinks. So even if I wanted to go have a bunch of drinks, they would take it away from me. They don’t push it on me. No one saying, hey, let’s have a couple. And they get it. They want me to be around. But I think for me to go to a bar, unless they’ve got gambling there, then I’ll go and I have fun with that. But now it’s hard, I mean, I got about two hours in me.

Jeff Ryberg 44:40
Most football games are three hours, so it’s hard for me to go there and sit there for three hours as they’re drinking pitcher after pitcher. And I’m the one watching how much they drink. I’m like “Oh my God, they’re going to have another one, they’re going to have another they’re going to have another beer.” And that was me. I was the one that was grabbing her to say, let’s get a couple more going. But so they’ve been great. I’ve been very lucky with that good group of friends, haven’t lost anybody as far as that.

Jeff Ryberg 45:03
I don’t go to the bars as much, I mean, because not as much fun anymore. I mean to sit there and do that, but I’ll have my soda water and lime, the place I used to go to frequently. I’ll show up now, and they’ll bring out the soda water and lime and they know that I’m not drinking. So it’s been nice. And so if I can keep the same kind of routine, I feel somewhat normal, if that makes sense.

Bill Gasiamis 45:25
You feel part of the action, but not partaking the things that are not good for you.

Jeff Ryberg 45:30
No, and, yeah, the drinking and driving that’s not an issue, which that took me a while to get used. To jump in my car and think to myself “Oh, I better be careful driving home.” But now I’m like, I’m not having any drinks, so it’s you know.

Bill Gasiamis 45:46
Would you have driven under the influence? Do you think?

Jeff Ryberg 45:48
Yeah, 100% Yeah. That’s another one that was just not a good life choice. Was very fortunate that I didn’t get myself in some trouble with that. So that was, yeah. So that is thing in the past, really. I know my friend, my friends have been very good, and my family and my kids have been very understanding and never an issue with, you know, pushing on me.

Bill Gasiamis 46:15
Yeah, you know, those online purchases that you made, is there been any regrets that you thought laid out. What did I point out for?

Jeff Ryberg 46:23
Man, it’s, you know what it is, It’s just clothes. If you go to my house, I have the same in my closet. I got, I don’t know what it is, I’m gonna have one of those. I gotta have a blue one. I gotta whatever. So my kids, like “Dude, stop buying stuff.” Man, you got more of the same clothes, they’re all blue or gray or whatever. I couldn’t wear them all, but I was an extra large. Now I’m like a medium large. I’m kind of all my clothes are too big. I look like one of my dad’s stuff.

Jeff Ryberg 46:47
So, almost 40 pounds is a lot, and most of was in my gut, if you see pictures that I mean, it was just so that, in itself, being able to be healthy and be around for my daughter to have her dad there is, you know, walking down the aisle is a big deal. I was very big deal. I guess I want to get to the people that were me three years ago and say “Hey, here’s what, here’s what it looks like.”

Jeff Ryberg 47:18
If you want to see what it looks like to have a stroke, I invite you to come to one of my groups during because not everybody is in the same position I’m in for a year in some are affected a lot more, and they’re not able to do the things that we get to do. It just, it’s a matter of just how it worked out. So if you take care of yourself now, you won’t be in that situation later. So yeah, that’s my message.

Bill Gasiamis 47:42
Yeah, prevention is the best medicine. I mean, though, if you can get through to people, to, you know, stop doing some of those behaviors, I mean, that’s the ideal scenario. That’s exactly what you want for them, but it’s not always is. Do you reckon there was any hope of anyone getting through to you in any way, shape or form, until you had like before, beforehand, if you had never had a stroke? Do you think anyone could have gotten to you and said you’re drinking too much? Or you’re doing this to yourself, or you’re making yourself unwell? Did you feel unwell?

Jeff Ryberg 48:18
Yeah, I did. Towards the end, I did. I started getting a little bit like, tired. I remember mowing the grass, and then, God, I was kind of tired. I walked up to the stairs, and I was kind of tired. And, like, that’s weird for me to be that tired. But, you know, people would sell the time, hey, you know, you need to slow down a little bit. My family would say, you know, you have another drink. Or I’d argue with my fiance or my kids. And it was always like, a little, maybe a quick trigger for but now I don’t have that as much right, more calm and relaxed, and things aren’t as big of a deal anymore.

Jeff Ryberg 48:49
But no, noone probably could have reached me. As far as making me stop drinking, I would have come up with a reason to but I go into a meetings, things like that. I haven’t done that. I haven’t done any of those things, probably should stop in but I think at the end of the day, I think I feel pretty good where I’m at unless I could help somebody else while I’m there, I would be happy to go to a meeting and talk to somebody else at why I stop.

Jeff Ryberg 49:15
I have a lot of friends that are in the summer situation that I talk to, but you know, people have to kind of find it their own way. And I don’t want to tell them, preach them about you need to quit. I just want to say, here’s your options. This is what I that’s what it looks like over here and over here. And, you know, I’ll help where I can.

Bill Gasiamis 49:34
Yeah, it is a little bit like that. I mean, I don’t think anyone could have told me to stop smoking before my strokes or drinking, or anything like that. I wasn’t drinking excessively or smoking excessively, but I was drinking doing a little bit of both. I wasn’t eating well. I was probably too stressed at work, not sleeping enough, you know, just the stock standard things that people do. And this blood vessel that. Of mine, that burst was always probably going to burst, but I didn’t make it harder for it to burst. I made it easier, you know, I created the perfect storm around it so that it can burst.

Bill Gasiamis 50:11
It’s a blood vessel that I was born with which is faulty from the beginning. It’s called the anterior venous malformation, and I just didn’t know it was there and and then after the stroke the first one, the first plate, I was like, yours, well, I don’t want to be the cause of the second one or third one or any other one, and I don’t want to not be here at 37 I definitely want to be around so I’m going to do everything I can to avoid it, even though I couldn’t avoid it.

Bill Gasiamis 50:41
Because, you know, once the genie is out of the bottle, it’s pretty hard to put it back in. And then and now, even now, like, you know, in the last probably 12 years, 13 years, maybe I’ve had 10 drinks in total, and I just can’t do it, but it makes me feel like I’m having another stroke. So there’s no point.

Jeff Ryberg 51:09
Yeah, no. I met a guy that had a stroke, and he said, he has one or two drinks, he feels like he’s a mess. And I that same with me. If I have one, it’s not the same. It’s just it’s gone. That thing of it is gone for me, it’s saying “Did you have headaches and stuff when you were having your situation?” Did you know that you’re having a…

Bill Gasiamis 51:30
I had a pretty obvious signs like my entire left side went now over a week. So it started with my big toe, and then it kind of crept up as the bleeding increased in size. It the numbness crept up from my big toe to my foot, then to my calf, then to my knee, then to my hip, then up my chest and then my entire left side. Took about seven days to get there and then, but I was ignoring it the whole seven days, other than going to the chiropractor to tell him, I think I’ve done something to my back. You need to sort out my spine.

Bill Gasiamis 52:06
And the chiropractor said “Well, there’s nothing, nothing there. You need to go to the hospital and get that checked out.” I argued with him. I didn’t want to go that Friday because we were working the next day was going to be a big day. And then I came home, my wife said, what did the chiropractor say? And I say, he said, I should go to the hospital. And she said “Well, what are you doing here?” And I said, “Well, I can’t go to the hospital. I got to work tomorrow. If I go to the hospital now at this hour, I’m not going to be out of there for hours.”

Bill Gasiamis 52:39
And anyhow, she said “Well, I’ll take you to the hospital. They’ll check you out, they’ll tell you there’s nothing wrong, and then you can go to work tomorrow.” I agreed with her. I thought that was a great idea. And then, of course, when we went there, they did a scan, and they said “Oh, there’s a shadow on your brain.” And it made complete sense when they said there’s something wrong with your brain, when they said it. But up until that time, the numbness, the last thing in my mind was that there’s something wrong in my brain.

Bill Gasiamis 53:06
Now the chiropractor didn’t say it, but he knew there was something wrong in my head, but he didn’t say those words. He just said “You should go to the hospital.” And when I went there, wow, yeah, they confirmed it, but they didn’t know what it was. They didn’t know if it was a tumor or a blood vessel or what. They had no idea because the blood was in the way, and it was not allowing the scan to pick up the issue, and it took some time to work out what the actual issue was.

Bill Gasiamis 53:36
But yeah, man, that was the start of February 2012 and that whole situation went on for about two and a half years, until November 2014 when it bled for the third time. And then they said “We’ve got to take it out. Now you need brain surgery.” There’s no getting around it, they took it out. And that can’t do anything. Since then, that’s completely gone. It cannot cause another stroke. But that hasn’t stopped me from feeling like I might be having another stroke, and I go to the hospital, I’ve still been after that.

Bill Gasiamis 54:17
Because, you have to ease your mind, and then after the surgery, because the blood vessel was about four centimeters in from the ER near the cerebellum. After the surgery, you know, by the time they get through four centimeters, couple of inches of stuff, of brain matter, you know, they’ve caused a little bit of damage, and they’ve nicked a few things, and that’s left me permanent tingling, numbness, sensitive skin weakness on my left side, so that, and tightness in the muscles, like, like they’re cramped, or like, I’ve been to the gym and worked them.

Jeff Ryberg 54:55
Interesting, yeah, I read your book. I read about my third of the way through your book. I think I did read about you kind of waited for your, have your own business, right?.

Bill Gasiamis 55:10
Yeah.

Jeff Ryberg 55:12
Yeah. I think I read that part. Yeah, that’s fascinating, that’s amazing. I wonder that’s interesting on some of the stuff that’s going on with mine as well. If I had to, maybe nick something as well, but that’s fascinating.

Bill Gasiamis 55:26
Well, thrombectomies are invasive. You know, they’re pretty serious procedures, and when people come into your brain and take stuff out, there’s always stuff residual that leaves you. That’s that they leave behind in a little bit of inflammation, a little bit of damage, a little bit of whatever. And there you’re definitely experienced post stroke symptoms and conditions. 100% you definitely are. And that’s all related to the conditions that you went through, the fact that your heart is back online, and all that kind of stuff, that should be the sign for you, right?

Bill Gasiamis 56:05
That should show you what’s possible in the in recovery, like how things improve, get better, start functioning better. It might be a bit slower in the head, but there also might be some permanent damage in the head that you can’t get around, but you can create the environment around that damage to support it so that, it’s not as big, as it’s not as impactful in a negative way. And that’s kind of what I’m doing.

Bill Gasiamis 56:33
I’m trying to support everything around that damaged area to just function as optimally as possible, so that the deficit is not the most is not playing a big role, even though it is playing a significant role. I’m curious, actually, now that I thought of it, how quickly did your condition improve after you stopped the alcohol? So with the heart condition, how quickly did that settle? Then you started to see real big improvements.

Jeff Ryberg 57:08
In my, within, like, six months. So by the time, I think, when I had the stroke in June, I went back in and November-ish, for another I did another MRI and an echo, and at that time it jumped back to 50% so I was at 15% to 20% on the left side, which is really low when I went into the hospital. And then this first time I came out, first was at 50% and now the last one was at 55% so I’m back to a 100% normal, no damage, no scarring. It was pretty bad shape going in. I remember the ambulance driver looking down at me, and she goes “Oh, that doesn’t look very good.”

Jeff Ryberg 57:53
And he’s like, No, that doesn’t look very good. I’m like “Well, hey, I can still hear you guys, what doesn’t look good down what doesn’t look good up there?” But, I knew it was in bad shape. But was interesting was that I was on such heavy heparin for the for a maxed out on it could have any more and then to even throw a couple clots after that, and a large vessel on the rights on the right side, is why he had to go get it, and for him to be there is, again, is he had up to the specialist there to be able to do that.

Bill Gasiamis 58:24
I don’t know what, heparin has made a massive role in decreasing the demo, for sure.

Jeff Ryberg 58:29
I’m sure, yeah, and so I did a good job of slowly weeding myself off of the baby aspirin I’ll take on occasion.

Bill Gasiamis 58:39
Have you done that in conjunction with your medical professionals?

Jeff Ryberg 58:42
So that was just data. So I think part of the issue, Bill, was, I had three cardiologists at a couple several neurologists, and you could ask each one would give you different answers, some would say, yes, that sounds great. This one says, no. This one says, maybe, if they’d all say the same thing, I would have taken it. But one would say, yeah, maybe take a half, or maybe don’t take any. Or so they were all very inconsistent. And so eventually got to the point where I just would listen to the one that was going to kind of go with what I liked.

Jeff Ryberg 59:16
And then it worked. And so as I got better over the year, in two years, and now I’m going to three years. I don’t take knock on. We don’t take anything right now. And so against most of the doctors would some docs would say you should be on something. Other doctors say you’re fine. If it’s not causing any issues, we’re good. So I don’t know it’s it’s one of those things where, if I got way too many doctors. I think I wish I had just had one, I guess, be honest with you.

Speaker 1 59:18
Yeah, right, they say that. I think there’s an old wise saying. And if you got one, watch, you always know what the time is. If you’ve got two, you’re never quite so sure.

Jeff Ryberg 59:54
That that’s exactly it, yeah. So, and that’s what learned as we go.

Bill Gasiamis 1:00:03
It seems like you’re working it all out slowly. You’re kind of ironing out all the crinkles and making progress moving forward. So that’s great. What’s the hardest thing about stroke for you? Do you feel is there something that you can isolate and say, well, that’s definitely the hardest part of it.

Jeff Ryberg 1:00:19
I think the hardest part is probably people just not knowing that having is not okay. You know, things are not as they look and unfortunately, likely to be back to normal and be able to do the thing they used to do all the time, which I’m about 95% there, probably 90% there, but I’m not quite there, and I’d like it just that’s the hardest part, is it what it looks like is not necessarily what it is. And I think more people I talk to, and the other thing too, probably is, I think about, is there’s not a lot of support after you have a stroke, there’s no place to go.

Jeff Ryberg 1:00:53
So when I got out, I’m like “Okay, now we’re going to setting up with the docs appointment.” They don’t, they just kind of say, good luck. I hope you make it. Things are great. Join a couple clubs, that’s it. And so one of the most recent people on my stroke group as a doctor, and she said, I don’t even know where to go. I don’t know what to do next. I had this, I’m recovering, and who do I talk to? What am I supposed to do for a follow up? There isn’t that.

Bill Gasiamis 1:01:17
Wow.

Jeff Ryberg 1:01:17
Right? So there’s not you could take anti-seizure medicine, you could take this, you take that you want to, you know, which sometimes it’s you need to take it. But I don’t. I think the hardest part is not knowing what happened and why it happened. And, you know, where do you get help at and how do you do it? What’s next? So, I mean, yeah.

Bill Gasiamis 1:01:39
We’ve spoken about a lot of “Aha” moments or things that you’ve come into your awareness, etc. Is there one thing you can pinpoint that stroke taught you?

Jeff Ryberg 1:01:52
Yeah. Taught me just kind of slow down a little bit. And I think everything was always at the mock speed, right? I gotta do it faster, quicker, better. I gotta, you know, how much money can you make? How you know, how fast can you do this? And at this point, I’m like, I’m looking to ready to retire massively and do different things and slow down. And hopefully have some grandkids at some point that I’m able to do stuff with.

Jeff Ryberg 1:02:14
And so those are the kind of things that I wasn’t really thinking about as much as I do now. Now it’s, you know, definitely change, 100% change in life, or save my life for sure. That’s definitely a is a gift and not a gift, if that makes sense.

Bill Gasiamis 1:02:30
Yeah, absolutely. Is there a little bit of insight, wisdom, advice that you want to sort of give the people listening, who are like you and me being through a similar situation? You know, and tuning in for maybe some I don’t know, something that might not have contemplated or considered before.

Jeff Ryberg 1:02:58
I think biggest thing is, you know, listen to your body for sure. And listen to slow down a little bit and enjoy the little things in life that you probably didn’t. It sounds cliche, and everyone’s going to say “Yeah, yeah, for sure.” That would have been me three years ago. God, I said, sure. But in the day, I’m just like you. I’m just a normal old guy that just happened to, you know, have a stroke that loves his family, loves his kids.

Jeff Ryberg 1:03:25
And I want you know, I would say, if you want to be around to enjoy them, you know, smile a little bit and listen to your body, because your body’s going to tell you “I knew. I knew what I was doing was causing some issues, and it didn’t slow down until it’s too late.” So that’s what I would do.

Bill Gasiamis 1:03:44
Fair enough.

Jeff Ryberg 1:03:45
Don’t get a second chance like we do. I mean, this was a gift, absolute gift. So, yeah.

Bill Gasiamis 1:03:51
I couldn’t agree with you more. Jeff, I really appreciate reaching out sharing your story, mate, it is a fascinating story. I wish you well on your ongoing recovery and just thanks for being my guest.

Jeff Ryberg 1:04:07
Bill, thank you very much. I appreciate it. Good talking to you.

Bill Gasiamis 1:04:10
Well, that brings us to the end of this deeply, powerful conversation with Jeff, from living with undiagnosed AFib and alcohol dependency to suffering a stroke in his son’s arms and receiving life saving thrombectomy just in time. Jeff’s story is a striking reminder that sometimes the wake up call we never wanted is the one that gives us a second chance. Jeff’s honesty about addiction and recovery and healing, both physical and emotional, is something I think many stroke survivors and their families will connect with.

Bill Gasiamis 1:04:43
His story showed that change is possible even after decades of unhealthy habits, and it’s never too late to choose a better path. If this conversation resonated with you, I’d love for you to share your thoughts. Please comment, like and subscribe on YouTube or leave a review on Apple Podcasts or Spotify, your feedback helps others find these stories right when they need them most, and remember people are discovering this podcast from their hospital beds just days after life changing diagnosis, that kind of access to support didn’t exist for me when I had my stroke.

Bill Gasiamis 1:05:22
But it does now, thanks to your continued engagement and support, if you’d like to help these episodes keep going, head over to patreon.com/recoveryafterstroke, every contribution makes a difference. Wherever you are on your journey, know this, you’re not alone, and like Jeff, your most meaningful days may still be ahead. Thanks for being here. I’ll see you in the next episode.

Intro 1:05:48
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 1:06:17
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 1:06:42
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Intro 1:07:09
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The post Stroke at 55: Jeff Ryberg’s Story of Surviving AFib, Alcohol & a Life-Altering Wake-Up Call appeared first on Recovery After Stroke.

When Adam Moore left work on a hot day in September 2023, he had no idea his life was about to change forever. A long-time athlete and dedicated hockey player, Adam brushed off a subtle feeling that maybe—just maybe—he shouldn’t play that night’s game. But driven by team loyalty and a lifetime of showing up for others, he laced up anyway.

That evening, a seemingly minor knock to the neck during the match would lead to a carotid artery dissection—a rare and often misunderstood condition that can result in stroke. Within hours, Adam experienced vision loss, extreme fatigue, and disorientation. By morning, he was blind in both eyes, unable to stand, and in the early stages of a life-threatening stroke.

A carotid artery dissection occurs when a tear forms in the wall of the carotid artery—the major blood vessel that supplies blood to the brain. Blood can enter the tear and split the layers of the artery wall, restricting blood flow or causing clot formation. This condition is one of the leading causes of ischemic strokes in younger adults, often triggered by trauma, even if mild.

Adam’s dissection was discovered after he arrived at the hospital. Sadly, due to delayed ambulance arrival and the rural location of his home in the New Forest, he was outside the window to receive TPA (tissue plasminogen activator)—a clot-busting drug that’s most effective within 4.5 hours of symptom onset. While doctors stabilized him, the dissection had already caused extensive neurological damage.

Diagnosis of carotid artery dissection often involves ultrasound, MRI, or CT angiography. In Adam’s case, imaging confirmed the dissection and its location on the right carotid artery. Interestingly, the artery did heal on its own—but not without complication. The scar tissue left behind created a small “bulb” that increased his risk of clot formation. To manage this, Adam was placed on long-term blood thinners, a non-invasive way to prevent recurrence.

Although stenting was considered, it was ruled out due to the complexity of the case—a decision many stroke survivors can relate to when facing difficult choices about intervention and risk.

Adam spent three months in hospital, including time in rehab at facilities in Southampton and London. He was paralyzed on his left side, experienced peripheral vision loss, and later suffered seizures as a complication of the stroke. These setbacks were accompanied by personal ones too—his marriage ended due to the strain of caregiving and trauma.

And yet, in the face of all this, Adam began to rise.

With the help of a private neuro physio, Adam has regained the ability to walk (often with a stick), and he’s even resumed activities like bowling and golf with his son. His left hand remains mostly immobile, and his fatigue is intense and lingering, but Adam is determined. He’s also embraced the power of peer support, finding encouragement in the recovery journeys of others.

“The hardest bit is not knowing whether you’re going to come out of it recovered… but I just don’t think I’ll accept that I might not. I’ll just keep being positive and working towards it.”

1. Listen to Your Gut – Adam ignored his instinct that something wasn’t right. Gut-brain communication matters, especially for people living with or recovering from chronic conditions.
2. Stroke Recovery Takes Time – There’s no fixed timeline. Healing is often nonlinear, and progress may come in unexpected ways.
3. Fatigue Is Real – Post-stroke fatigue isn’t laziness; it’s neurological. Managing energy becomes part of everyday life.
4. Community Helps – Whether it’s through online groups, rehab centers, or conversations with others who’ve been there, connecting with fellow survivors can make all the difference.
5. There Is Hope – Even when things feel stuck, small wins—like standing up unaided or seeing a familiar face clearly—can build momentum.

Carotid artery dissection survival stories like Adam’s shed light on lesser-known stroke causes, especially in active adults. It’s also a reminder that even when diagnosis is delayed, recovery is still possible, and life can still be rich and full of meaning.

As more people discover the Recovery After Stroke podcast from their hospital beds, just days after diagnosis, stories like Adam’s are reaching people when they need them most. That’s the power of shared experience, lived insight, and showing up with honesty.

You are not alone.

Support is closer than you think. Recovery may not always be fast or easy, but with community, the right professionals, and your own courage, you can move toward something better—step by step.

To hear Adam’s full interview and learn more about his path to healing, tune in to the Recovery After Stroke podcast on YouTube, Spotify, or Apple Podcasts.

Carotid artery dissection survival story inspiring stroke survivors to keep going, seek rehab, and embrace hope even in the hardest times.

Adam’s Facebook
Threads

Highlights:

00:00 Introduction and Purpose of the Podcast
01:01 Adam Moore’s Introduction and Initial Symptoms
03:20 Sudden Stroke, from Ice Hockey to Life-Changing Moment
11:55 Carotid Artery Dissection Survivor: Regaining Sight
19:00 From Hoist to Hope: Adam’s Long Road After Stroke and Seizures
22:17 Deep Recovery: Adam’s Carotid Artery Dissection and Healing Journey
31:07 Fighting Post-Stroke Fatigue
41:48 Exploring Hyperbaric Oxygen: A High-Tech Hope for Stroke Recovery
52:09 BEFAST: The Lifesaving Acronym Every Stroke Survivor Knows
1:00:36 Hope, Uncertainty & Resilience: Adam’s Stroke Recovery Journey

Transcript:

Bill Gasiamis 0:00
Hello everyone, and welcome to Recovery After Stroke. Before we dive into today’s inspiring conversation, I want to thank you for being a part of this incredible community, whether you’re a stroke survivor, a caregiver or somebody looking to understand the recovery journey more deeply, your presence here means a lot more and more people are now finding this podcast while they’re still in hospital, just days after being diagnosed with stroke.

Bill Gasiamis 0:27
And that is exactly what I set out to achieve when I began this podcast back in 2015 to shorten the time between stroke and finding support from others who truly understand this wasn’t possible back then for me, but now it is, and it’s happening because of every single guest who has shared their story, every listener who’s left a comment, a review or even just press play, your support makes that reach possible, and with your help, we can keep expanding it.

Bill Gasiamis 1:01
If you believe in what we’re doing here and want to help cover the cost of production so we can keep bringing these important stories to the people who need them the most. Please consider becoming a Patreon. At patreon.com/recoveryafterstroke. Now, I’m honored to introduce today’s guest, Adam Moore. Adam is a stroke survivor whose life changed dramatically after a carotid artery dissection following a hockey game. What began as a normal day ended with sudden vision loss, seizures and an entirely new reality.

Bill Gasiamis 1:35
In this episode, Adam shares what it’s like navigating post stroke fatigue, dealing with uncertainty, managing his recovery and staying hopeful. As a father and former business owner, his story is raw, honest and full of insights that I know will resonate with many of you. Let’s dive in. Adam Moore. Welcome to the podcast.

Adam Moore 1:56
Thank you, Bill.

Bill Gasiamis 1:57
My pleasure. So the light is a bit of an issue for you, and hence this is going to be a little bit darker. This recording the overhead light can bother you, and it’s on at the moment, but you try to avoid lights. Tell me a little bit about that.

Adam Moore 2:18
Yeah, so after the straight after the stroke? Well, when the stroke happened, I was actually blind in one eye to start with, and then I lost that sight in both eyes. But then the following morning, I woke up and could see again, thank goodness. But after that, it just seemed I had to wear sunglasses all the time or an eye mask, because I just couldn’t look at any lights at all. It was really, really affected.

Bill Gasiamis 2:44
What kind of stroke did you have?

Adam Moore 2:48
Ischemic.

Bill Gasiamis 2:51
Ischemic, and where was it located, if it affected both your eyes?

Adam Moore 2:56
So it’s right-hand side. It was a arthroid artery dissection, right-hand side.

Bill Gasiamis 3:17
Was it the carotid artery?

Adam Moore 3:18
Carotid artery, that’s right, yes.

Bill Gasiamis 3:20
How did the dissection occurred? Do you are you aware of an injury or anything that you sustained?

Adam Moore 3:25
Yes, so it was back in September 2023 it was a normal day at work, it was the hottest day of the year. Quite busy day at work. No different to normal, but I play ice hockey and roll hockey. I have come for over bit 30 old years, and I had a hockey game scheduled for that evening, and I came home from work that night, and I had a sort of gut feeling I wasn’t sure if I should be playing that night. And I said to my wife, my son, I’m not sure if I really want to go tonight. And they both looked at me and said “Well, that’s not like you. You always want to play.” And I do, I loved playing.

Adam Moore 4:16
And they said, you can’t let your teammates down. And which is another good point, and I, you know, bit of a team player, so yeah, and I didn’t really think it was a good sort of, well, it’s not really good way of teaching your son either, is it? Today’s teammates down. So I went, and I should have listened to my gut, really, because I shouldn’t have gone. I went and, it was a very roll hockey, and ice hockey is a very physical game. It’s full contact, it’s great game, don’t get me wrong, it’s very exciting, but I took it was full on.

Adam Moore 4:57
I took a knock to the neck, which I didn’t think ended of Bill, because it wasn’t like a trauma at all. It was just a slight knock. I carried on playing the game, and I started to see some sort of, like, almost orbs in my eyesight. But I was given it my everything I could do in work and life and sports, and I carried on playing, just thought I’d over exerted myself, like you do when you exercise and you start to see, sort of starts in your eyes. Even managed to score a goal, finished the game, had a bit of banter with the lads in the change room.

Adam Moore 5:43
Got showered, changed, jumped in my van, put all my kit away, and and the kit bags are huge with all that gear in it. I was giving my friend lift home. It was about an hour and 20, an hour and 30 minutes home drive. And on the drive home again, my eyes, the street lights were sort of Halo in, and the other car lights were Halo in, and that’s the only thing that I could think. This is a bit strange, I’m not happy about this. There was no other, nothing else. You know, I showered, I could carry everything, there was nothing. Was like, none of my limbs were not working.

Adam Moore 6:25
I wasn’t falling over or anything. Drove all the way home, dropped my friend off. I must admit, by then, I was actually thinking, I’m not sure if I should drive. Perhaps I should get him to drop me home. But I did drive, I drove. I drove really, really carefully home, drove into my own driveway, pulled up, got out of the van, didn’t fall out of the van, got out of the van, locked it up, walked into my house, walked up the stairs, got to my bedroom, and my wife was awake, and she said, “You okay?” I said “No, I don’t feel very well. My eyes just don’t feel right.”

Adam Moore 7:05
And, you know, our wives are sometimes have paracetamol in a glass of water, they think, seems to sort everything. So she gave me that, and I got into bed, and I fell asleep for, well, what was literally a minute or so, and I couldn’t see out of one eye. Just lost the vision completely. And then I fell asleep again for another five minutes, and woke up, couldn’t see a thing out of both eyes. And that was really scary. Really, really scary. Managed to get to the bathroom, sat on the toilet, went to get off the toilet, and then collapsed, and that’s when she realized that I was having a stroke.

Adam Moore 7:59
I’d not known about strokes and so or she, so we were kind of a little bit sort of blase about it all, but she phoned an ambulance, and they sort of confirmed, I think I’d had a little bit of sort of slurred speech by then, but the fact I couldn’t stand up, and I was quite a strong person, and I was doing my damnedest to try and get up, and I could not get up.

Adam Moore 8:26
The ambulance took a long time to get out to me. I ended up going to Southampton General Hospital, but it because of the distance of where I was playing the game and the amount of time the ambulance took to get to me. We live quite out in the New Forest, which is quite out in the sticks. And I was well out of the TPA time, unfortunately. And I was begging them to give you the TPA shop, but they said they could do more harm than good, so we can’t, we really can’t give you it. Yeah, like they say, time, more time, more damage.

Bill Gasiamis 9:05
Yeah, your gut instinct, that’s an interesting thing. I’ve experienced that before.

Bill Gasiamis 9:05
I know, yeah, I’ve heard you talk about the brain gut, or the gut brain?

Bill Gasiamis 9:21
The gut brain, yeah.

Adam Moore 9:22
And to be honest, Bill, I’ve had it before. I had a holiday in the Maldives before, and I was poorly then, and had a fall and concussed myself. And at the airport at Heathrow before we flew out, I had the same gut feeling that I shouldn’t be going. And we had horrific time out there as well. So yeah, there’s some of the safer I think there it is.

Bill Gasiamis 9:48
Let’s take a moment here to reflect on Adam’s story so far from Carotid Artery Dissection to life altering recovery, his experience reminds us of how suddenly life can change and our strength can emerge even in the most unexpected places. If this podcast has been meaningful to you, one simple way to support it is by not skipping the ads. It may seem small, but it genuinely helps offset production costs and allows me to keep bringing you more episodes like this one, and for those of you who’d like to go further, please consider joining us on patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 10:27
Your support helps ensure these stories keep reaching those who need them most right from the very beginning of their recovery. Now, let’s get back to Adam’s story and hear how he’s continuing to push forward in the face of so many challenges it, there is definitely something to say with for it.

Bill Gasiamis 10:45
Do you think maybe, well, you can’t. It’s also you can’t really say until the thing that you thought you shouldn’t be doing turned bad, like it’s such a difficult thing to get your head around, rise your head that’s trying to make sense of this sensation, or this feeling, or this feedback that you’re getting from your gut, and then it only turns to shit when it’s turned to shit.

Adam Moore 11:14
Yes, you kind of right.

Bill Gasiamis 11:16
Yeah, and then you kind of go “I should have listened to my gut.” But like, how do you do that? How do you actually do that? And what would you have done, not played, sat on the sidelines, missed the game. You wouldn’t have had the neck injury, and then you wouldn’t have had a stroke, and then you would have known, how would you have known that it was the right decision to stay?

Adam Moore 11:41
Wouldn’t, I could have had a car question the way, crash on the way up there, they’ve never know you’re here.

Bill Gasiamis 11:45
Yeah. So it’s just bizarre and strange. How long did you spend in hospital, and then what were you dealing with?

Adam Moore 11:54
Three months.

Carotid Artery Dissection Survivor: Regaining Sight

Bill Gasiamis 11:55
Three months?

Adam Moore 11:55
Yes, three months. I was in Southampton general, and then I went to Limington. We which is a hospital in New Forest, which is very nice. And then I ended up in a rehab ward in a place called Snowden in Southampton. But then I realized I had private health care, so I ended up going to a very, very good hospital in London, where I was up there for a good three weeks, and I managed to get home before Christmas at 2023.

Bill Gasiamis 12:29
What kind of deficits were you being rehabilitated to overcome?

Adam Moore 12:34
Well, I lost all my left side, really. Luckily, my speech wasn’t lost because it’s my right side.

Adam Moore 12:43
My speech was fine. My eyesight, as I say, was affected peripheral vision, and I’ve lost a bit of normal sort of this bit my right eyes bit blurry. I can see Bill, but I can’t see as well as I used to. But, saying that, you know, I’m not blind. I was blind that night. I couldn’t see a thing. And I got a train up the other day to London to go to Queen Square up a limb, which I’m on their on their books at the moment, for treatment.

Adam Moore 13:15
And there was a chap that was, he must have been 70, 80, on the train with me, and he was completely blind with a with a cane, walk into a white cane, and I just thought, wow, you know, he’s completely blind, and he’s getting the train up on his own, you know, I can see. I can actually see. Yes, I can’t see as well, but I can see. So there’s always someone you know, worse.

Bill Gasiamis 13:38
Yeah, and but getting on with business as well. Get, you know, supposedly worse, according to you, and then getting on with business. Know what they’re going to do? Just sit in the house, and, I don’t know, wait for the years to go by. What about your left side? What’s it like now? How does it feel?

Adam Moore 13:56
Well, I see a private physio, that’s a neuro physio who’s amazing, he’s got me on my feet. I walk with a walking stick, but I can walk without it as well. Just not I’m building up a stamina, to be honest, to walk further without it. I would like to get I used to run, I loved running. I used to be very, very active. Got my own business. So yes, I really want to get back to some sort of a good recovery, and I will push myself as much as I can to do that. I’ve got an 11 year old boy, so yeah, I’ve got to recover, and I will take time, but I’m going to push and push and push.

Bill Gasiamis 14:42
What line of work have you been?

Adam Moore 14:45
So it’s car repairs, body work on cars. I don’t know if you’ve heard of a dent man, you’ve got a nice new if you’ve got a nice new car and someone opens their door and puts a ding in it, I come along and just massage there. Now, you know, you never know who’s there.

Bill Gasiamis 15:02
That’s magic, that’s magician work there, mate, I love that.

Adam Moore 15:06
Yeah, I really miss it as well. I loved my job. Absolutely loved it, it’s a real good craft.

Bill Gasiamis 15:13
So that’s been two years you’ve been.

Adam Moore 15:16
Well, almost two years in September.

Bill Gasiamis 15:19
Yeah, that you’ve been out of action, and things are progressing. You’re finding that things are improving, but it’s been a long haul.

Adam Moore 15:30
I couldn’t move my leg, I couldn’t move my arm. I can move both now. I can’t move my fingers yet, but it’s things are progressing very slowly, but they’re progressing so some people say, you know, I’ve had physio said to me, your arms not working. Now it’ll never work, which you know is wrong. And it pushes my other physio to make it work, which is great, and pushes me as well. But I’m quite a determined, positive person.

Adam Moore 16:04
So and even my eyesight, you know, I’ve had people say it’s nerve damage. It’s never going to come back once nerve damage is done, and it might not, but it also might. People have also said that people’s eyesight have improved over time.

Bill Gasiamis 16:16
So, yeah, you’re in a really early stage of recovery, and I don’t know anything about your condition. I’m not a doctor, so this is not medical advice or anything like that, but there is definitely a possibility to hold on to hope. And I’m not sure how much that moves people who hear it, you know there is hope, I don’t know. I get it, but you’re only about 18 months in, and then there’s a lot to go. Like so much, there’s areas in the brain that are still inflamed, that are getting better and healthier.

Bill Gasiamis 16:50
Inflammation is continuing to decrease more and more things will come online, and yes, with rehabilitation and you’re going after it, that’s also supporting the potential for a recovery, and then your you’ve got sounds like your neuro physio is the right guy, the right person on the side.

Adam Moore 17:15
And he said to me the other he said to me the other day, which made me feel great. He said, you’re still recovering. Yeah, he said “You’re still recovering. You’re making improvements. Still you’re not you’re not plate age, you’re still recovering. So you just got be patient.” And I’m not patient, that’s the problem. No one is these days in this world, we’re all so impatient. We just want everything now.

Bill Gasiamis 17:38
Yeah, and yet you have most likely put in the hard yards in another one of your pursuits before where you had no choice but to be patient, even though maybe psychologically your head was going, let’s get this done, or let’s get this sorted. You have to go through the motions of whatever you know the steps are to get to the particular place that you want to get, like playing the sport that you’re playing at 47 you don’t become that. You don’t have that capability without doing lots of training, lots of all these things going to get on on the field and to be there with your teammates.

Bill Gasiamis 18:17
You have to go through a process. And patience is not and patience must is inherent, like it is part of the whole business, and so is this when you look back and reflect, you’ll see that that was probably the best skill for you to learn. The patience, the less time you focus on. Why hasn’t this happened yet? And the more you time you focus on, let me do everything I can to make it happen, the more your progress will continue and improve. And it’s just about being able to then reflect back since 2023 and go “Okay, look how far I’ve already come.”

Adam Moore 19:00
Yeah, I was hoisted out of bed to the loo, and everything I felt, you know, when you see a bit of meat on a hook, you know, butchers, that’s how I felt. I felt absolutely horrendous, it really, I did just feel awful. And I remember saying to my parents, all I want to do is get to the toilet and back on my own, I just want to do that. I don’t want to be moved around on a bloody hoist, it was awful. But the stroke was quite bad, so I ended up with quite a lot of scar tissue, and I ended up having seizures after that, and that was horrendous. Anyone that has seizures after a stroke.

Adam Moore 19:41
You just got a feel for him, because it was just well, my wife left me because of it, because she couldn’t cope with looking after me through it. Because, if you know, it really was, well, my son and her family gray in bed right, had a seizure and stopped breathing, they thought they’d lost me, so it freaked them both out. But thankfully, the medication has balanced now, but that’s taken months to balance that out. It wasn’t a quick fix in that it had to be done out of over such a long period of time, taking you off one drug and getting you onto another.

Bill Gasiamis 20:22
So you’re dealing with stroke, you’re dealing with seizures, and then your wife, your relationship ending.

Adam Moore 20:32
Yep, yep.

Bill Gasiamis 20:35
It’s a lot for one person to go through a short amount of time.

Adam Moore 20:41
Yeah, it’s been horrendous, yeah.

Bill Gasiamis 20:44
Are you living on your own now?

Adam Moore 20:47
No, I live with my parents. Well, they’ve been living with me because of the seizures. I’ve not been living my own now. Now the seizures seem to have stopped, thought it will be, I’ve got the right house, and I’ve got things in things in line where I’ve got a full line and contact lines and stuff like that. Okay, so I need people, so, yeah, things are looking up, but it’s just taken so long, like everything, but stroke is just, so such a long, drawn out.

Bill Gasiamis 21:21
You know, they’ve certainly not like smashing your toe on the coffee table and then being okay a day later. It’s definitely not like that. And you’ve had heaps of injuries, I imagine, in the sport that you play. So you know, you have a sense of, Well, I’ve got to be sideline for a few weeks, and then things will heal, and then I’ll recover, and go back to it.

Adam Moore 21:43
Although played, I played full contact games for over 30 years. To be honest, I’d met until the stroke. I’d never been in hospital. I’d been very, very lucky, very fit and healthy. Yeah, no underlying health issues. So yeah, I have been quite lucky up until but I don’t consider myself lucky at all now, you know, none of it’s lucky, lucky to be alive, yeah, but that’s it.

Bill Gasiamis 22:11
Lucky to have your vision.

Adam Moore 22:13
Yeah.

Bill Gasiamis 22:17
There’s a bit of luck there. I know that it’s not the kind of situation you want to find yourself in, and then, kind of, like, it’s terrible, like, the the hit on the neck, it like it’s a such a precision hit to get the particular outcome that it got. I mean, that’s ridiculous, that’s just.

Adam Moore 22:37
Well, I didn’t realize how deep the cartoid artery is, it’s not on the surface, it’s quite deep, because I always worried about even, like, sleeping on it, or, like, I don’t know, just even leaning your head over on it, whether it would upset it, because I was told I couldn’t have any deep tissue massages this side or anything.

Bill Gasiamis 23:00
Yeah, fair enough.

Adam Moore 23:01
We’ll see a chiropractor. But they said “No, it’s quite deep. You you’d have to do something, and then you’d have to have another trauma or something like that.” Because you hear about people having, like, I don’t know.

Bill Gasiamis 23:11
Like neck manipulations and having their lottery damage.

Adam Moore 23:16
Yeah, or even that head bed thing for me.

Bill Gasiamis 23:20
Yeah, going to the hairdresser, absolutely, or experiencing whiplash even a low-speed vehicle collision.

Adam Moore 23:34
The other thing as well, is the dissected artery did heal, believe or not. It healed, but it also healed, and rather than just a straight line heal, okay, it healed with a little sort of bulb in it. So they put me on blood thinners, and they worried that if I came off blood thinners, it might catch something in the bulb. I don’t understand why they didn’t put a stent in it, but they didn’t, I don’t know why. They said it wouldn’t have helped but.

Bill Gasiamis 24:04
Yeah, I suppose the stents another level of complication that then gets added to your medical causal clot. And then also, you know, they’ve gotta get it in there, and when you’re in the position that you’re in, you know, probably the less intervention, the better, and the fact that it’s healed is great, but yes, exactly that little lump can create a change in the blood flow and create a low pressure, a little bit of low pressure in the artery, and as a result of that, cause a clot, and then send it up, so build up.

Bill Gasiamis 24:36
So blood thinners are probably the best way to manage that, because it’s a smaller intervention, and it’s something that you can do for a very long time, although it’s not ideal, it’s a really good outcome. And the fact that they didn’t have to go in and do anything to your artery, I think that’s about.

Adam Moore 24:55
I mean, I’ve met so many people. I’ve got to a lot of support groups, different strokes headway. I’ve met some great people on forums as well. Some of the people in the rehab places that had craniotomies, amazing people. And, you know, I’ve they’ve kept in contact. I’ve seen them and they don’t even know they’ve had anything done. And I saw them when they had first had it done. You know, it’s amazing what they’ve, what they can do.

Bill Gasiamis 25:30
The medical world is phenomenal. I mean, look, I don’t know, maybe 50 years ago, you and I wouldn’t be having this conversation if these things good to us, you know, like.

Adam Moore 25:42
But also the people, I mean, these people that had, it’s a dent, a dent in the head, it was, and you could see how much it was affecting their confidence. Yeah, it was almost like a bit of skin covering their brain, up, you know it was, and you could see how it was affecting them. And then I saw him, same guy that I was in rehab with him months later, and the smile on his face because he was back to normal, it was just magical to see that. So nice to see it. Yeah, I still see him now. It’s brilliant, it’s so good.

Bill Gasiamis 26:22
The head, without the skull, without half a skull, is bizarre to me that they even concocted that theory, and they made it happen and proved to be successful, and then put it back in it’s just the whole thing is just mind boggling. I can’t wrap my head around. And I love that there’s idea that that is a thing that they can do that allow the brain to expand or swell or whatever it’s doing at that time, and then give it all the space to do what it needs to do.

Bill Gasiamis 26:59
And then reattach it and protect it again. It’s great, yeah, and the people doing that work, just think about the people doing that work this, the stuff you have to be made of to be able to actually perform that procedure.

Adam Moore 27:18
Yeah, that’s the worst headache, when my brain was swelling, it was just, I remember saying, I want an ice pack. I want an ice pack. I just could not get enough of them. I had family bringing in frozen peas to put on my head, could not get enough of them.

Bill Gasiamis 27:37
It’s crazy, and have those settled down now.

Adam Moore 27:41
Don’t get them till now. It was literally the first 24 hours. First 24 hours was just, it’s when your brain’s just in shock and swollen. It’s just too big for your skull, it was just awful. And they were they were close, they were close to sort of opening mine up to release the pressure. But luckily, it did start to go down after a while.

Bill Gasiamis 28:06
Right, how do you get about your day now? What do you get up to? How does your day sort of look?

Adam Moore 28:16
Well, I struggle with fatigue. Fatigue is my biggest deficit, huge. I can sleep fine, I sleep all night, but it’s getting out. It’s getting up in the mornings, I just cannot wake up, I have to peel myself out of bed. I’ll even have a cold shower, and I still can’t wake up. I don’t this is really a problem for me, fatigue. I used to bounce out of bed. I wouldn’t even drink alcohol when I went out before the stroke, because I’d hate to wait waste a day not being being hungover and not doing anything. But, you know, I just cannot get up now. It is so annoying.

Adam Moore 28:16
Is it that you’re not waking up, or you’re still tired? You need to sleep. What is it specifically, do you know?

Adam Moore 29:11
Yeah, I just can’t seem to wake up, yeah? I just, I could just stay in bed all day, tired, not as in being lazy, just tired.

Bill Gasiamis 29:21
I know fatigue. Yeah, completely different, neurologically tired, and then what do you think they consist of? Are you still doing regular visits to rehab? How do you get through this?

Adam Moore 29:37
Yeah, I go twice a week to my private rehab.

Bill Gasiamis 29:41
For an hour each time.

Adam Moore 29:43
Yes, which can be exhausting as well, but I push myself to do that. I was in a wheelchair Bill, so I’m out of that now. And you know, tonight, I’ve been bowl tending, bowling with my son. I mean, how cool is that?

Bill Gasiamis 30:01
That’s cool, okay.

Adam Moore 30:03
And Thursday, I was down the driving range hitting golf course.

Bill Gasiamis 30:08
So okay, that’s great, man.

Adam Moore 30:11
I love that I be able to do something like that, which reminds me that I can do stuff, you know, I still could do it makes me feel normal doing stuff like that.

Bill Gasiamis 30:21
But rest and recovery is a massive part of your day, which, I know now you’re conscious about it, where before it was just kicking back, perhaps sitting on the couch, having a snooze and then being fine the next morning. But whereas now it’s like a thing that you have to actually navigate.

Adam Moore 30:39
Yeah, it annoys me that I can’t get up and even go out and wash the car or do stuff like that. Yeah, I miss work. I miss doing practical I was very practical person, and I just can’t do it at the moment. And it really gets to me.

Bill Gasiamis 31:02
So, you’re, it’s productivity, like you, you want to be more productive.

Adam Moore 31:07
Yeah, even doing stuff around the house, you know, DIY, clean, whatever, I just can’t do it at the moment. You know, lucky I’ve got my parents to do help me.

Bill Gasiamis 31:20
It will improve as your physical recovery improved, all this other recovery is also going to kick in and start helping and working with the fatigue.

Adam Moore 31:31
Improves, because that’s the biggest down up for me at the moment, is the fatigue.

Bill Gasiamis 31:35
The fatigue was a big thing for me for a good probably couple of years, and then afterwards, it was on and off, causing me a little bit of grief. Where, if I went and rode my bike on a Saturday morning, which I did then, that was only 20 kilometers, which, you know, might take, I don’t know, an hour and a half, two hours with a rest in between. And because it wasn’t like a full on ride, it was just a leisurely ride, yeah, but when I’d get back, the rest of my day would be gone.

Bill Gasiamis 32:15
Wiped out, completely wiped out, spending from the morning till probably the evening recovering from that to be ready by the end of the day to potentially go to dinner or catch up with some friends or see somebody. And that I started to notice that my time of recovery shortened, so the amount of time I needed to recuperate after that bike ride shortened and ensured and short, and then it’s at that point where, now, you know, from a 20 kilometer bike ride, which is nothing I could recover, I’d be sort of refreshed after about an hour and a half. But it took ages, it took years to get to that.

Adam Moore 32:59
The thing is, you don’t want it to stop you doing things, because you’ve got to recover after doing things. Yeah, you want to push yourself, but sometimes it bites you in the backside then.

Bill Gasiamis 33:09
Yeah, for a while. So, but then I planned my day differently, right? So I planned, well, I’m going for a bike ride today, which means I need to have nothing booked in for the rest of the day. And that was worth it, because I knew what I was I was wasn’t going to miss out on my bike ride, and I wasn’t going to have to be anywhere else and suffer through that. So it worked well. And then a few times, when we went to parties where we had, like, family events or friends birthdays or something, I knew I was going to be wrecked the next day.

Bill Gasiamis 33:38
So there’d be nothing on the next day. We’d be like, can you get to our birth? Can you get to the birthday? Saturday night, yeah, we’ll be there. We’ll probably leave a bit earlier than most other people, and that was great. But Sunday, there was just no plans, there was a write off. We’re doing nothing, and then if by some chance I felt up to it, on Sunday afternoon, I might be up and about and do some stuff. So we kind of planned the recovery as part of the event that we needed to do so that we never missed out on anything.

Adam Moore 34:10
Yeah. That’s what I try and do, almost, yeah.

Bill Gasiamis 34:14
It worked for us. Your work, did you have to let go of all your clients and tell them that you’re not available and they need to go elsewhere?

Adam Moore 34:26
It’s difficult. I’ve got a very good business partner. We had two businesses running, so he took one and I had the other, and we I’m very lucky. I’ve got an employee who’s very good, and he still works for me, so he’s ticking over the clients. At the moment, I’d love to get back to it, that’s my goal, to get back to it, whether it’s going out with him and helping him or just going out with him and seeing the clients and just, you know. I don’t know, making life bit easier for him to get more done or, you know, but I just don’t know. It’s, this is the thing.

Adam Moore 35:13
You don’t know how well you’re going to recover. No one will put their head on the block and go Adam in 10 years, you’ll be fine. No, they just won’t do it. So, if you can think as positively as possible, but I just don’t know, yeah.

Bill Gasiamis 35:29
If you put a couple of days aside, one day to do, to sit in this in the passenger seat with your employee, and just drive around, and then the next day to recover when the time’s right, that might be kind of a good way to just sort of give yourself the space to do the amount of recovery that you need to do, knowing that it might be really draining being at work for a day, even as just a accomplice.

Adam Moore 36:02
Yeah, it’s annoying, though, because without being big headed, I was bloody good at my job, and I’ve got my clients phoning me up saying “AV have you recovered? Are you coming back to work yet?” I wish I could, they’re like “Come on, get back on your tools.”

Bill Gasiamis 36:21
We had the same thing, I had look it took. We have painting companies, so it’s a little bit more physical. You know, there’s a lot more physical work for everybody that’s involved, sometimes on multiple story buildings and all sorts of different things. So I had to outsource all my work to other contractors, and then just keep the contact with my client and then manage the work. I didn’t do work for many, many years, and it took me to get back to business.

Bill Gasiamis 36:53
Took me until 2019, so seven years to properly get back to business, where I was on site every day, where I could manage being on site every day and being physical for a full day. So in that seven years leading up to that, I was intermittently in and out of that business, attending to different jobs, etc. But because of my lack of consistency in my being able to turn up and my ability to work, there was a lot of clients that kind of just fizzled off and and went elsewhere, which is completely makes sense.

Adam Moore 37:14
It’s well, it’s not you doing the job. Is you sat at your hands, but I built it up nothing, and it breaks my heart. That it could be at risk. I hope it’s not. But you work hard all your life, and then it’s almost like, I describe it to people, was like, you work your whole life, putting stuff together, getting your dream, this, dream that, and then it’s like someone chucking a grenade into it, just exploding overnight, overnight, just bang. It’s gone. That’s, how I describe it anyway.

Bill Gasiamis 38:10
Are you joining?

Adam Moore 38:12
No, because of the epilepsy, because of the seizures, I can’t I’ve got to go a year without one, which is say it seems to be under control now, but, yeah, I’d love driving. I used to drive every day.

Bill Gasiamis 38:27
And then a medical professional will give you the will sign you off? How will that work?

Adam Moore 38:37
Yeah, you have to have a year without a seizure, and then I think you apply to DVLA. I think you have to take a test, but my vision is going to be the biggest problem. I think whether my vision, my field vision, will be sufficient enough to get the license back.

Bill Gasiamis 38:56
Were you wearing glasses before the injury?

Adam Moore 39:00
Yeah, yeah.

Bill Gasiamis 39:03
For reading that those types of purposes? Was it short sightedness or It’s just from reading really. Did they adjust your script at all for the condition that you have you have now? Or does it not help?

Adam Moore 39:15
No, it’s more peripheral loss, really, than the prescription side of things. I mean, I’ve looked into, I’ve contacted a place up in London. There’s a place in Germany called Savior, or Sable. They do like they do treatment for regenerating the blood flow to your damaged nerves. So I’m looking into stuff to see if there is any way you can treat it, I don’t know.

Bill Gasiamis 39:43
Is that a hyperbaric oxygen therapy thing or something?

Adam Moore 39:45
No, it’s not to do with hyperbaric it’s sort of still blood, blood flow to the nerves, damage.

Bill Gasiamis 39:55
Yeah, there seems to be a lot of things that you can access if you cut the capable.

Adam Moore 40:00
That’s the other thing, I spoke to an optician, they said, there’s so much. They said, don’t be too damn hard, because there’s so much going on with stem cells with the eyes as well. In years to come, they could be able to do something with stem cells. So, that’s changing every year. It’s just developing and developing.

Bill Gasiamis 40:17
So, yeah, hyperbaric seems to be something that it’s doing good work or seeing good results at the moment for people, but it’s hard to access because it’s really expensive in the type of protocols that they’re saying need to be, that you need to do that seems to be really difficult to access.

Adam Moore 40:43
Is there a time? Is there a time window? Should it be done from like early, early days?

Bill Gasiamis 40:47
No, there isn’t. What seems to be the situation is, is that particular guys that I interviewed from Aviv clinics? They’ve got a clinic. They’re going in Tel Aviv, they’ve got one in Dubai, I think they’ve got one in Florida. Basically, what they do is they determine whether or not you have areas in your brain, which they call penumbras. They’re areas that are under duress, but still alive.

Bill Gasiamis 41:22
They’re perhaps not fully on board at the moment, and what they aim to do is rehabilitate those numbers of the brain, those supposed perhaps like sleepy or offline neurons, by increasing blood flow and oxygenation through hypoxic events.

Adam Moore 41:48
Am I right in thinking that that would be, they would look at you to see if they could help you before they treat you?

Bill Gasiamis 41:55
Correct, yeah, but they do the full assessment, and then once they’ve done the assessment, they’ll see on their MRIs or whether or not there’s areas worth rehabilitating. So you don’t do it blindly. You don’t just go there, hope for the best and see what. And hyperbaric oxygen theory therapy, for people like me who don’t understand the science behind it, it’s actually quite interesting situation. So what they do is they put you in the chamber, and they increase the oxygen level in the chamber so your body is getting a larger volume of oxygen, like than it would normally get.

Bill Gasiamis 42:35
I don’t know what the numbers are. And then what happens is they trick the brain into thinking that it’s going into a hypoxic state, a state where it doesn’t have enough oxygen, simply by changing the atmosphere in the chamber to normal external atmosphere. And then brain thinks that it’s losing the oxygen and then it causes a biological response that somehow stimulates a particular hormone or therapy or something.

Bill Gasiamis 43:10
It stimulates something in the brain that enables for blood flow and healing and new blood vessels to form around the penumbra and potentially, kind of reactivate it with more blood flow and more oxygen, etc.

Adam Moore 43:27
Okay, what sort of money we talking about?

Bill Gasiamis 43:31
They’re talking about 50 grand US for a two month, I think a two month protocol, which is five days a week where you’re doing you’re in a chamber, hyperbaric oxygen chamber that’s actually looks like a room, so you walk into it, you sit down, there might be a number of people in there, and then, because they’ve scanned your brain, and they know where the damage is, what they do is they try and get you to do exercises and particular tasks that will light up that part of the brain while you are in the chamber.

Bill Gasiamis 44:04
So they’re firing that part of the brain, they’re increasing the oxygen and then creating the hypo, the fake hypoxic event, and then, at the same time, what they’re hoping to do is that rewires and creates new neurons in that space, new blood vessels, increases the blood flow, the oxygenation, and it’s all happening while you’re basically just sitting in chair or standing up, or whatever they need you to do to activate that part of the brain.

Adam Moore 44:36
And is that something in this country, or is that broad look?

Bill Gasiamis 44:39
I’ve interviewed the guys that were in that part of the world. That’s not to say that they’re the only guys, but there’s two interviews that I’ve done on hyperbaric oxygen therapy, and they just they go through it in a lot of detail, in the interviews, especially in the first one, I’ll have those links in the show notes, and then I’ll send you the links to those videos. It’s really amazing, actually. While I’m on here and people are listening, I may as well just go and find it and tell people which episodes they are so they can definitely find it.

Bill Gasiamis 45:16
So it’s a really fascinating thing. And I’ve had some stroke survivors who I’ve interviewed, who have gone to their local beauty parlor and access the hyperbaric chamber the local beauty parlor and done an hour in the hyperbaric chamber. I wouldn’t recommend it in this particular scenario, because of the fact that you need to know, you need to be monitored.

Bill Gasiamis 45:50
Your medical condition is needs to be taken seriously, but, it’s starting to become more accessible. Is basically what I’m trying to say. Now, episode 334 was the most recent one with Dr. Shai Efrati. So 334 you’ll find that on YouTube, Spotify, iTunes, and all that kind of stuff. And then there was another one that I did earlier, which was episode 250 hyperbaric oxygen therapy with Dr. Amir Hadanny, both from the same organization, one from Tel Aviv, one from Florida, and then they go through in a fair amount of detail what the therapy achieves. So worth a listen.

Adam Moore 46:47
I might have listened to him already, but I will go back. I will go back definitely, yeah, because my eyesight is my biggest worry, if it can help that I would be really interested.

Bill Gasiamis 46:56
For sure, they’ll probably be able to it might give you some insights. And look, there might be a opportunity to find somebody more locally, or in a in a country closer or something. Yeah, you look like you’re starting to get tired now.

Adam Moore 47:16
It’s been long, every day is tiring.

Bill Gasiamis 47:20
What time is it there now?

Adam Moore 47:25
It’s 5mins to 11pm.

Bill Gasiamis 47:28
Are usually in bed by now?

Adam Moore 47:30
Yeah, yeah.

Bill Gasiamis 47:34
How far beyond your bedtime have you gone?

Adam Moore 47:40
I usually go to bed by about 8 o’clock, to be honest.

Bill Gasiamis 47:44
Yeah, well, I’m glad you stayed up, but at the same time, I would have been happy to make some changes to our schedule to make sure we got you in bed on time.

Adam Moore 47:54
No, I was definitely going to stay up for you, that’s for sure.

Bill Gasiamis 48:00
So it’s been 18 months, things are improving. You wish they were improving a little bit quicker? Things getting better?

Adam Moore 48:08
Yeah, it would never be quick enough.

Bill Gasiamis 48:09
I appreciate that. Sport, your teammates and that, have you gone and seen them play or hung out with them at all?

Adam Moore 48:19
I haven’t gone back, I don’t watch. I’ve always played, I hate watching. I will definitely skate again. I don’t think I’ll play hockey again, but I skating is one thing I loved, and I’ll be back on a pair of skates. Definitely, whether it be I skates or roller skates, even when I was in hospital, I felt like if, if someone put a pair of skates on me, I reckon I could skate. I know I can’t walk, but I could skate. I could skate better than I could walk when I was younger.

Bill Gasiamis 48:58
Yeah, something to look forward to your son, definitely. Was he 11 then? Or is he 11 now?

Adam Moore 49:05
He’s 11 now, he’s 10 when it happened.

Bill Gasiamis 49:09
Does he have any kind of idea of what’s going on? Or do you know if he’s have you guys chatted about it? Where’s he at with it?

Adam Moore 49:23
He’s amazing, really, he’s so resilient. Can be prouder really. There was a lot of books and stuff we got from the stroke people for him to read when it happened. Someone, I love side of stroke and stuff like that, some really good stuff. Yeah, something we will talk about later on. But, yeah, it’s been a big life changing thing for everyone. And the biggest thing, when I woke up and when I was in the rehab. I just I was more sad, not serious, sad about myself, but I just didn’t want him or my wife to miss out on their life because of me, to be honest.

Adam Moore 50:12
Because, you know, okay, I’m not going to be able to have much of a life at them at the moment, but I just didn’t want them to miss out on holidays and things and him growing up, and he won’t, I’ll make sure he won’t. But yeah, It just that was my biggest concern, to be honest.

Bill Gasiamis 50:30
And the relationship ended amicably by the sound of things.

Adam Moore 50:36
And I want to see as much as I can and my son, so we’ll keep it that way. You know, we went together, the three of us bowling tonight. So, yeah, okay, so if we can do stuff like that and I see him more, then yes, and it was great.

Bill Gasiamis 50:57
Yeah, that’s a blessing as well. Did you consider your mortality? Did you go to that place? Are you the type of guy that contemplates these types of things before the stroke, perhaps, and is it different now after the stroke?

Adam Moore 51:21
Never really thought about it before, but yeah, of course now, yeah. You always worry about having another one, but I’m definitely a more educated person in it now. I mean that that night, if I’d have thought about my vision changes, I would have driven straight to the hospital. But you know, the BE FAST. You know, everyone talks about the BE FAST, but the vision, most of the people that I speak to, the vision wasn’t one of the signs, but it is one of the signs.

Bill Gasiamis 52:03
Yeah. How big can you make the acronym? That’s the issue.

Adam Moore 52:07
It is, yeah. How big can you make it.

Bill Gasiamis 52:09
An effective I know that the BE FAST tends, I hear that the BE FAST tends to cover about 80% of the people who have a stroke, and that’s kind of why they use it in Australia, we don’t use the Be, we just use the fast, F A S T, Face, Arms, Speech, Time, and the BE is used in lot of other countries overseas, but not in Australia.

Adam Moore 52:40
I don’t think the BE was used here a while back. I think it was something sort of new. It was just, yeah.

Bill Gasiamis 52:50
Perhaps that they are expanding the acronym. Maybe, they’re expanding it.

Adam Moore 52:58
The other thing I find quite hard is the fact that if someone has a stroke in a public place and they’ve got asphasia, how can they tell someone that have having a stroke if they can’t speak? You know, that must be awful. Yeah, you know, should there be some sort of sign language?

Bill Gasiamis 53:26
Well, the thing about aphasia is you may have a form of aphasia where you can’t express yourself either way. It wouldn’t matter, it’s about having awareness in the community like and that’s the hard thing, right? It’s like trying to make people aware what a stroke looks like or might look like. Okay, well, then a stroke, according to me, looks exactly like the way I look, it didn’t look at all. My stroke wasn’t FAST at all, there was no there was no balance issues, there was no eye issues, there was no face, arm, speech issues. There was nothing.

Bill Gasiamis 54:03
It was just tingling on my left side, and it didn’t stop me from doing anything. So I went to the chiropractor. Says, like, what does a stroke even look like? You can’t really determine that, but for the majority of the people, the BE FAST will cover a lot of those conditions balance. You know, there could be a million things as well. I was sick about a week ago for a couple of days, and I was dizzy. I was like, the world was spinning. Everything was spinning, and I thought I was having another stroke, which is ridiculous, because the condition that caused the mind is not there.

Bill Gasiamis 54:44
The blood vessel that was in my head that leaked, they removed, and it’s been completely resolved. But my instinct, it wasn’t my instinct, it was my anxiety said “You might be having another stroke mate.” Like, yeah, but what is this anyhow? It settled down, and it was good. In a couple of days, I was just having, like, a stomach bug or something, some impacting me.

Bill Gasiamis 55:10
So that’s the thing. Like, I’ve also spoken to a lot of stroke survivors who say they thought it was a headache, or they have migraines all the time, and they just put it down to a migraine, took something to calm the pain, and went to bed. And then there’s people who have had a stroke in bed while sleeping in the middle of the night. Yeah, it’s just the luck of the draw. It’s like, there’s no hope in trying to, like, capture all of the versions of it with heart attack.

Bill Gasiamis 55:45
There’s some signs that are pretty obvious, that are pretty universal, pain down your left side, pain in your back, you know, heaviness in the chest, all those types of things. There’s a couple of things that are very common across the board, that you can say that might be a heart attack. Let’s get into action. Let’s do something about it. But with stroke, it’s just the luck of the draw, man and hopefully, everyone who is going to have a stroke is able to receive, access help, really, really rapidly. That’s the only thing.

Adam Moore 56:26
That is one thing I have learned is get somewhere as quick as possible.

Bill Gasiamis 56:32
But your teammates might benefit from knowing about the BE FAST message, you know. So that could be something that you could teach them. And I know one of the sports where there’s a lot of stroke is Brazilian Jiu Jitsu.

Adam Moore 56:47
Well, this is what I was saying about someone grabbing me around their neck. I don’t think I’d, you know, would need that now. That could be dangerous, because if it’s still weak, ask for you then yeah. And then have heard all about that. I’ve listened to the episode.

Bill Gasiamis 57:04
Guys getting choked out, getting choked out during training to practice, getting choked out. Yeah, it’s crazy. It’s insane. And yeah, so that’s the thing. Tell me, what do you reckon has been the hardest thing about stroke for you?

Adam Moore 57:24
Fatigue and Patience, the only thing I will say as well, Bill is, if anyone’s experiencing it, it’s I would give it a good year. I spent a lot of money on gadgets, physio. Trying to fix things that you have got to give it a good year patience before there’s no quick fix. You’ve got to allow time for, do you know what I’m saying.

Bill Gasiamis 58:01
Yeah, you need kind of to get through that acute phase.

Adam Moore 58:05
yes, yes, yes.

Bill Gasiamis 58:07
And let things settle and see where you’re at.

Adam Moore 58:10
I was so desperate to try and find something to get me well quicker, tried everything. I booked into other rehab, in inpatient rehab places paid lots of money. I should have just waited for six months to a year before.

Bill Gasiamis 58:28
Yeah, that’s okay, tou worked it out. So what has stroke taught you? I mean, I know patience is on the list that, like, is there been anything? Have you had an “Aha” moment? Has there been something that, like you’ve gone, okay, I get it now.

Adam Moore 58:58
No, don’t think so.

Bill Gasiamis 58:59
There’s nothing profound. That’s basically where I’m headed, like a profound lesson?

Adam Moore 59:06
No, I can’t think of any.

Bill Gasiamis 59:07
Yeah, that’s alright. What do you want to tell people who are listening? I imagine you joined the podcast to share a story. Hopefully it helps somebody motivate somebody, has somebody relate to you? They’re probably listening. What do you want to say?

Adam Moore 59:27
Just be patient. Have positive people around you that does help and seek peer support. Peer support people, for me, have been brilliant. I’ve had a lot of people that have gone through 10 years, 13 years, of stroke recovery, and they give you so much hope when you see them come out the other side of it. I know people that playing tennis, playing football. I know one lady that’s she had a stroke on a ski slope in Switzerland.

Adam Moore 1:00:08
She’s back skiing now. You know, she sends me clips of her on ski slopes, and it’s amazing, and that’s through her hard work getting back there. And it’s so nice to see people doing stuff like that, because you can do it. You can see people do it, yeah.

Bill Gasiamis 1:00:29
It’s definitely worth aiming for, you know.

Adam Moore 1:00:36
The hardest bit is not knowing whether you’re going to come out of it recovered. You know, I hope, I really do hope, my sake and my son’s sake that I do recover so that we can enjoy each other’s company and do things that we used to do. But as I say, there’s no written fact that you’re going to recover 100% again. Yes, you can put a lot of hard work into it, but no one will say, yes, you will. No, you won’t.

Adam Moore 1:01:08
That is really tough. And I don’t think I’ll accept the fact that I might not recover. I find that really hard. I’ll just keep on being positive and just.

Bill Gasiamis 1:01:25
Working towards it.

Adam Moore 1:01:26
Yes, yes.

Bill Gasiamis 1:01:29
Hey, fair enough. I really appreciate your time. Thank you for reaching out to be on the podcast and staying up way past your bedtime.

Adam Moore 1:01:39
I appreciate you giving me your time.

Bill Gasiamis 1:01:43
Yeah, you’re welcome, and I look forward to hearing from you down the track, you know, and see how things have progressed.

Adam Moore 1:01:49
Thank you, thank you.

Bill Gasiamis 1:01:52
That brings us to the end of this heartfelt episode with Adam from a split second neck injury that led to a Carotid Artery Dissection to vision loss, seizures and the slow climb through rehabilitation, Adam’s journey is a reminder of the raw truth and resilience found in stroke recovery. If this conversation resonated with you, I’d love to hear your thoughts. Please, like comment and subscribe on YouTube or leave a review on Spotify or Apple Podcasts, and remember, even just listening through the ads is a small way you can make a big difference in keeping this podcast going.

Bill Gasiamis 1:02:27
The fact that people are now discovering Recovery After Stroke in hospital, sometimes just days after their diagnosis, is the most powerful outcome I could have hoped for. That kind of early connection and support didn’t exist for me in 2012 but it does now, and it exists because of you, the listeners, the guests, and everyone who takes a moment to engage and share this movement only continues with your support.

Bill Gasiamis 1:02:53
So if you’d like to help me keep the podcast going and growing, please visit patreon.com/recoveryafterstroke, and become part of this mission to bring hope, connection and insight to stroke survivors around the world. Thanks again for tuning in, wherever you are on your recovery journey, just know you’re not alone, and your best days may still be ahead. I’ll catch you in the next episode.

Intro 1:03:17
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:03:47
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 1:04:11
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 1:04:38
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The post Carotid Artery Dissection Nearly Took Everything – But I’m Still Standing appeared first on Recovery After Stroke.

If you’re a stroke survivor—or someone supporting one—you’ve likely come across many therapy options and recovery strategies. From traditional physiotherapy to alternative treatments, the road to recovery can be long, overwhelming, and, at times, discouraging.

But what if there was a way to wake the brain back up, even years after your stroke?

Welcome to the world of the Helius PoNS Device—a groundbreaking neurostimulation tool designed to re-engage your brain’s natural ability to heal itself.

In this post, we’re breaking down what the PoNS device is, how it works, and whether it might be the missing link in your recovery journey.

The PoNS (Portable Neuromodulation Stimulator) is a non-invasive, FDA-authorized and Health Canada-approved medical device that delivers mild electrical stimulation to the tongue. This stimulation targets the brainstem and cerebellum, the regions of the brain involved in movement, balance, and coordination.

At first glance, it may look like a futuristic headset with a small mouthpiece—but behind this simple appearance is a powerful method of neuroplasticity activation, helping stroke survivors regain control over their body in new ways.

• Non-invasive and drug-free
• Originally developed in partnership with the U.S. military
• Backed by clinical trials and years of research
• Authorized for use in Canada for stroke, TBI, and MS, with more conditions expected to be added soon

The PoNS device is worn around the neck, with a connected mouthpiece that rests on the tongue. It sends electrical impulses through the tongue to the brainstem, stimulating the cerebellum, the area responsible for motor learning and balance.

When paired with targeted physical or cognitive therapy, this stimulation enhances the brain’s ability to reorganize and form new connections—a process known as neuroplasticity.

The result? Many stroke survivors are seeing improvements in:

• Balance and gait
• Fine motor skills
• Dexterity (e.g. handwriting, typing)
• Cognitive function
• Confidence and independence

Originally developed for improving balance and gait in those with traumatic brain injury or multiple sclerosis, the PoNS device has since been shown to benefit stroke survivors in other ways too.

In a recent episode of the Recovery After Stroke Podcast, neuro-rehabilitation expert Brody Jackson from Neuro Peak Performance in Canada explained how his team uses the device in customized programs to help clients with a wide range of neurological deficits—including fine motor skills, spasticity, and even functional movement disorders.

“We’re not just treating ‘a stroke.’ We’re treating the specific limitations that person has. The PoNS helps activate the brain’s capacity to improve, no matter how long it’s been since the injury.” — Brody Jackson

Neuroplasticity is your brain’s ability to rewire itself.

Think of it this way: your brain was once a sponge, absorbing and adapting rapidly during childhood. After a stroke, that sponge becomes rigid—but the PoNS device softens it again, giving your brain the opportunity to learn and adapt like it once did.

When paired with repetition and targeted therapy, this process leads to more efficient learning of new motor patterns and regaining lost function.

Just like learning to drive or play piano, repetition is key—but the PoNS accelerates that learning by putting your brain in an optimal state for growth.

In Canada, where access is more open, patients purchase the PoNS device through clinics like Neuro Peak Performance. The device includes a collar and a mouthpiece that’s active for 14 weeks (98 days). After that, mouthpieces can be replaced if the user wants to continue therapy.

While pricing varies, the investment reflects a comprehensive therapy program, including:

• Personalized assessments
• Intensive therapy sessions (often 2–3 hours per day)
• Weekly check-ins
• Optional continued use after the initial program

For many, this is a life-changing investment—especially for those who have plateaued or feel stuck in their current rehab.

Currently, the device is most accessible in Canada, where regulatory barriers are lower. Patients from the U.S., Australia, and Europe have traveled to Canada to begin therapy without the red tape often found in their home countries.

Conditions currently supported include:

• Stroke
• Multiple Sclerosis (MS)
• Traumatic Brain Injury (TBI)
• Parkinson’s (off-label use, pending approval)
• Vestibular and functional disorders

In episode 200 of the Recovery After Stroke Podcast, we spoke with Cheryl Schiltz, the very first person to use this technology. After losing her inner ear function due to a medical mishap, Cheryl struggled with constant vertigo and imbalance.

Using the early prototype of what became the PoNS device, Cheryl retrained her brain—literally learning to balance through her tongue.

Today, she’s a public speaker and advocate for neuroplastic therapy, living proof of what’s possible.

Here’s what to consider before starting PoNS therapy:

• Are you currently hitting a plateau in your stroke recovery?
• Are you committed to doing daily therapy for 14+ weeks?
• Are you open to non-traditional approaches that are evidence-based?
• Can you travel to Canada (if outside the country)?
• Are you ready to invest financially and emotionally in your next recovery chapter?

If you answered yes to any of these, then PoNS may be worth looking into further.

Visit www.neuropeak.ca to learn more about clinics using the PoNS device.

Watch Episode 200 featuring Cheryl Schiltz for a real-world story of the PoNS journey.

Talk to your doctor or neurologist about whether you may be a candidate.

Explore additional recovery tools at recoveryafterstroke.com/learn

Recovery doesn’t end after the hospital stay or outpatient rehab. Whether you’re 3 months or 3 years post-stroke, the brain can continue to grow, heal, and adapt.

The Helius PoNS Device isn’t a miracle cure—but for many, it’s the missing piece in the recovery puzzle. If you’re ready to take back your independence, regain movement, and explore what’s still possible, the PoNS might be the spark that reignites your path forward.

Helius PoNS Device brings new hope to stroke survivors by rewiring the brain with neuroplastic therapy and real-world recovery results.

Neuro Peak

Highlights:

00:00 Introduction and Overview of the Podcast
03:23 Brody Jackson’s Background and Clinic Details
05:37 Explanation of the Helius PoNS Device
13:27 Kinesiology and Its Role in Rehabilitation
18:12 Helius PoNS Device: Cost and Accessibility
26:12 Therapy Program and User Experience
34:09 Brody Jackson’s Perspective on Neuroplasticity
48:39 Client Success Stories and Testimonials
50:58 Challenges and Misconceptions About the Device
1:03:55 Final Thoughts and Contact Information

Transcript:

Bill Gasiamis 0:00
Hello again, everyone, and welcome to Recovery After Stroke. Before we jump into today’s incredible interview, I wanted to share a quick update my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, has now sold over 400 copies and continues to receive amazing feedback. If you are on your own recovery journey or supporting someone, this book offers hope, insight and encouragement for finding meaning and growth after stroke, you can find it at recoveryafterstroke.com/book, or on Amazon by typing my name, Bill Gasiamis into the search bar.

Bill Gasiamis 0:39
Now let’s talk about today’s episode. If you’ve ever wondered what is possible in stroke recovery, even years after your stroke, this is the episode for you today. I’m joined by Brody Jackson, a neuro-rehabilitation expert and a kinesiologist from Neuro Peak Performance in Canada. The clinic Brody works in is one of the world’s leading providers of the Helius PoNS device, a fascinating neurostimulation tool that’s helping stroke survivors around the world walk again, regain balance and reconnect with parts of themselves they thought were lost.

Bill Gasiamis 1:16
Brody shares what the PoNS device actually is, how it works and why it is not just about balance. It’s about rewiring the brain using targeted neuroplasticity-based therapy. We also dive into the emotional side of recovery and the small, powerful winds that fuel long-term success. And if the PoNS device sounds familiar, it might be because you’ve heard my interview with Cheryl Shiltz, the very first person to ever use a technology that led to the creation of the device. That’s episode 200 and it’s a must-listen.

Bill Gasiamis 1:53
If you’re curious about what’s possible when it comes to rewiring the brain after injury, you’re going to love this conversation. It’s packed with inspiration, real world rehab results and hope for what’s still possible no matter where you are in your journey. Let’s dive in. Brody Jackson, welcome to the podcast.

Brody Jackson 2:13
Yeah, thanks for having me, Bill.

Bill Gasiamis 2:16
Now forgive me for asking, but how did we meet? Who introduced us?

Brody Jackson 2:23
So I believe you reached out to me via a patient and his wife, who I’ve been speaking to for quite some time about entering our clinic and kind of just through conversation back and forth, of especially going to engage in our PoNS program. And from there, I guess they reached out to you, I probably presume, wanting maybe more questions or more answers, and then it just kind of organically made its way back to me.

Bill Gasiamis 2:54
Exactly, alright. Thank you for the reminder. Sometimes I struggle to fit the pieces. I get a lot of people requesting guests, I get a lot of people requesting to be on the show, so it makes a little bit challenging. Now we’re going to talk about what the PoNS is in a minute, but before we talk about what the PoNS device is, I’d love you to tell the listeners a little bit about your background, the kind of work that you do, a little bit about your organization?

Brody Jackson 3:23
Yeah, absolutely. So my name is Brody Jackson, so I am a kinesiologist. I’ll say that on paper, but really, especially in Canada, we wear a lot of different hats, but my I specifically specialize in neuro rehabilitation, rehab. So I work for a clinic. We actually just recently changed our name. We are now called Neuro Peak Performance and Physiotherapy here in Surrey, British Columbia, Canada, which is just outside of Vancouver, about half an hour out, we used to be called the Surrey Neuroplasticity clinic.

Brody Jackson 3:57
Which I believe if you start to look online, you’ll see a lot more of that name floating around. We deal with all things the brain. So our clinic is kind of a multi-sprung kind of company. We have kind of three different heads, we’ve got our clinical trials division, which is called our CNS. We’ve got the clinic which is us, and then we also have our own proprietary medical device called the Neuro Catch, which ultimately scans brain function. So from there, we kind of went into this really cool realm of assess, test and then implement.

Brody Jackson 4:34
And that’s kind of what our bleed of our company’s been, and we focused around all things brain. So everything from, you know, run-of-the-mill low-level kids playing sports concussions all the way up through traumatic brain injuries, MS, Parkinson strokes, and a lot of the off label or kind of the more or less mystery situations and everything in between. So we kind of see a little bit of everything.

Brody Jackson 4:59
Every day, but really, we try to strive towards using a lot of evidence-based and technology based product and assessment and intervention to be able to give us a much more non biased and objective way of treating the various ailments. So we’ve got a huge team on our roster of kinesiologists, physiotherapists, occupational therapists. We run with counselors a lot of our kids, and our physios do the bulk of the work. We like I said, we wear a lot of different hats, and it’s allowed us to do a lot of really cool things with a lot of special individuals.

Brody Jackson 5:37
So that’s kind of how we’ve really been we our goal is to obviously treat people mainly for the brain, and find new ways to get them better. And then one of the main things that we’ve obviously been using here is the PoNS. So the PoNS is not our product. It is a product from a company called Helius. So they are an American based company, they’ve got there’s been PoNS users all over the world. Now, it is a very cool device, I have it with me here. So I don’t know if people will see me on video or not, but this is what it looks like.

Bill Gasiamis 6:13
They will.

Brody Jackson 6:13
Okay, so I will walk people through that after.

Bill Gasiamis 6:17
Yeah, lift it up for a sec. Let’s hold it there for a little bit. I’ll make you feel uncomfortable so it looks like overgrown set of glasses from the back. And then how would you put it on your head? What would it look like when you’re wearing.

Brody Jackson 6:34
Yeah, so as I put it on, so you can see it’s got a fairly flexible collar, it’s very user friendly. It was originally designed for people with TBI, so it was ultimately supposed to be very simple to use, flexible you wear it around your neck and on with the collar itself. It will be connected to a mouthpiece, and that mouthpiece, this is our demo device. I’m not actually going to put in my mouth, but it does sit inside your mouth, on top of your tongue, and it does sense stimulation through your tongue, which will travel through into our brain stem and essentially stimulate our cerebellum.

Brody Jackson 7:10
Which our cerebellum is our movement cortex of our brain. And from what research tells us is the fastest way to get into the brain to elicit something very special called Neuroplasticity, which is the way the brain changes itself and can heal. So I’m sure many of your users have maybe read, maybe you’ve heard of Norman Deutsch, he’s very famous in the brain health world.

Brody Jackson 7:36
The way the brain changes itself is one of his more famous books. It talks very extensively on the PoNS. So a lot of that neuroplastic, and neuromodulation stimulation has been developed through that, and we get to see it firsthand here.

Bill Gasiamis 7:53
Love it so very cool. The reason I know about, the reason this all came about now, or I’m starting to put all the pieces together, is that I somebody reached out to me, wanted to know if I had interviewed somebody who had used that device, the PoNS device. And what I’ve actually done is, I’ve interviewed Cheryl Shiltz, who was number one person who used the very first device in the 1990s after her whole inner ear was destroyed by some medication due to a medical intervention that she needed.

Bill Gasiamis 8:35
And as a result of having her inner ear damaged and destroyed, she wasn’t able to walk, have any balance. All she had was a spinning room. And what do they call it? When everything is moving around you all the time.

Brody Jackson 8:53
Vertigo.

Bill Gasiamis 8:53
Vertigo all the time. And she happened to even under those really extreme conditions, sign up to a course to go to the University of Madison, Wisconsin and do a course on some topic that she was interested in, and by some stroke of absolute miracle, Paul Bachy-y-Rita and his team were working at the University of Madison, Wisconsin.

Bill Gasiamis 9:24
Developing tools for Neuroplasticity. Paul Bachy-y-Rita, for example, helped somebody who was blind, completely blind, shoot baskets into a garbage can with a device that was sort of mimicking vision on his forehead. And then Cheryl has this device that they designed, they put it in a gyroscope. They put a gyroscope on a helmet on her head. And then they attach this probe thing, she puts it on her tongue.

Bill Gasiamis 10:00
And then with training that stimulates the Neuroplasticity to in their in her words, retrain the tongue to know where Cheryl was in the world, to give her a sense of balance, back to kind of rewire her inner ear to the back of her tongue to tell her how to balance and then, long behold, she’s the first person who proves the theory. And then from there, we have the opportunity to develop the devices, and now they look like the one that you put around your neck. Now for people watching and listening, Cheryl is a must-watch episode.

Bill Gasiamis 10:41
It’s an absolutely must-watch episode. It’s episode 200 and I cannot stress how important it is that you watch that episode if you’re interested in regaining your balance after a cerebellar stroke, or you have some other inner ear problems or some other issues related to your stroke now. Do you know about Cheryl Shiltz, Brody? Let’s take a quick break here from this incredible conversation with Brody to remind you about two powerful tools you can use right now in your stroke recovery journey.

Bill Gasiamis 11:17
First, if you haven’t picked up my book yet, The Unexpected Way That A Stroke Became The Best Thing That Happened. I encourage you to do so. It is filled with honest reflections and practical strategies from someone who’s been there me and the other people who I interviewed to help me write the book. Over 400 copies have already been sold, and it continues to help survivors navigate the physical, mental and emotional challenges of life after stroke. You can grab your copy at recoveryafterstroke.com/book.

Bill Gasiamis 11:51
Second if you’re looking for guidance in your recovery, whether you’re just starting out or hitting a plateau, visit recoveryafterstroke.com/learn. There you’ll find some self-paced video lessons and resources designed specifically for stroke survivors and caregivers. All right, let’s get back to Brody and learn more about how the Helius PoNS device is giving people a second chance at mobility, balance and confidence.

Brody Jackson 12:19
Yeah, I’ve heard kind of vague rumbles of it early on, as I was kind of getting into neuro rehab. And then as, you know, as we started to learn about the PoNS, we learned of, you know, a lot of their background stuff through their work in Russia, and then, obviously, through some of their in inter stuff through Wisconsin. And then you start to dive down into the Neuroplasticity and kind of the history of it. And I’ve read little antidotes, and I haven’t heard your podcast with her actually, so I’d be very interested myself to actually give this a whirl on that as well. So I will look into that.

Bill Gasiamis 12:53
It’s a phenomenal podcast. She’s such a lovely lady, and she takes you through the entire story of how she lost her inner ear, how she regained it, and how it changed her life, it’s just absolutely amazing. I couldn’t believe that I was interviewing her, because I reached out just by fluke, like you do with all the people that you want to have on the podcast. And she said yes, and I couldn’t believe it. And she’s still doing work in that space, still has an interest in that area, and it’s well worth looking into.

Bill Gasiamis 13:27
So your client, or your potential client, contacted me and said “Do you know anyone about who has used the PoNS? I said “No, but I know the first person who ever developed the theory and the device to get it to where it is today.” And what I suppose I wanted to do was, since we couldn’t talk about since I didn’t know anyone, I thought maybe you could talk about some people who have used the PoNS, but before we talk about them.

Bill Gasiamis 13:58
I want to know what Kinesiology is, because I’ve had the pleasure of having some kinesiology done with me, and it’s amazing, and I don’t get it, but I love it, so I’d love for you to describe in your own words what Kinesiology is and how people use it to benefit.

Brody Jackson 14:22
So being akin it’s very different across different regions, especially different countries. The core competency of it’s essentially the active approach of human movement. I would say, up in Canada, we’re very similar to physios it, but we just don’t do like, I would say, more or less a physio, but a lot bigger, more of an active component. So we’re still treating, we’re still assessing, we’re still doing hands on, we’re still doing a lot of the things that a physiotherapist would do, but we are going to be.

Brody Jackson 15:00
It with a lot more movement-based and activity and strengthening, lot more of the active, like the exercise component, and in terms of a kind of what you’ll see in our clinic, where a lot more balance and gait specialized. We do a lot more specific to the ailments. But a lot of us have, you know, vestibular specialization training, ocular training, a lot of those things that assume that a physio only could do. A lot of us will do as well and can. It’s just there’s a little bit more of an active component. In other countries, like I know, in the US, it’s a little different. It’s a little bit more exercise only driven.

Brody Jackson 15:40
And then I’m not too sure what it looks like in in your part of the world, but I would assume it’s probably very similar where it’s a lot more exercise therapy driven. But at least for us here, that’s kind of what it looks like.

Bill Gasiamis 15:53
It seems like it’s probably broad.

Brody Jackson 15:57
It is fairly broad, yes.

Bill Gasiamis 15:59
So what I have when I’ve had kinesiology, basically, my chiropractor uses it to test where he needs to work. And he does the resistance tests of my leg, of my arms and what have you. And then from there, he somehow knows how to follow that back to a particular part of the spine and then work there. Like, I completely, totally, don’t get it, but I see the result because he does a test my hand doesn’t stay up, and then he does something on my back, and then he goes back, tests the hand, and then the hand stays up and responds.

Bill Gasiamis 16:41
Do you know what I mean? Like, it’s, so interesting. And it’s like he’s working on, like, on circuits and Switching Circuits on and off. Well, on, he’s trying to switch them on, actually, not off.

Brody Jackson 16:53
Yeah, that’s all about his isolating, you know, different limitations and deficits. And from there, you can reverse kind of engineer backwards of what might be causing that or might be creating that implication, and he’s worked through it that way. And that’s kind of the the ethos of what a kinesiologist is going to do is we’re assessing what those limitations or those deficits are. And that’s why I always say every no patient is the same. Everyone gets a unique assessment.

Brody Jackson 17:20
Whether it is balance or gait or vestibular, strength or muscular, whatever that is you’re not treating the let’s say it’s a stroke. You’re not just saying, I’m treating a stroke and blanketing it as a stroke. You’re treating what that individual, specific limitations are that are very specific to that person. So it’s dystonia, or it’s increased tone, or it’s spasticity, or it’s a gate deviation, or it is a balance issue.

Brody Jackson 17:51
It’s, as we know, with, you know, there’s different kinds of strokes that elicit very different limitations, and as we know, no stroke is the same. So that’s where we approach that, and that’s the beautiful thing with physical therapy and active therapy specifically, is we’re there to treat the limitation and make those gains that way.

Bill Gasiamis 18:12
Alright, let’s talk about the PoNS a little bit. So when did you first come across it?

Brody Jackson 18:19
Yeah, so I came across it as I was actually interviewing to join this team about four and a bit years ago. And what’s pretty cool now is myself and my co clinician, Matthew Gangon, we’re actually probably the two most seasoned spawn users in the world. So a quick little side note is our clinic actually did a lot of Helios initial research and a lot of their clinical trials. So through that, we got very blessed at being one of their kind of key locations. If you actually look up our clinic, there’s a big thing on Montel Williams using it with his MS, and that was all done at our clinic.

Brody Jackson 19:01
He came and traveled through. And there’s a lot of stuff on the Neuroplasticity clinic and PoNS itself. So we got very lucky to use it a lot. And so since then, like, we’ve been Helios biggest, one of their biggest locations for PoNS usage. Like we see, there’s been times where we’ve seen almost triple digits of individuals in a year come through using it, whether it’s been through clinical trials or through private patients. So definitely a lot.

Brody Jackson 19:33
And then myself and Matthew, like I said, we’ve been here the longest, and we’ve used it with pretty much everybody, so we got a lot of experience. So even though I say, I’ve only been around it for four and a bit years, I’ve seen a very, very, very large number of PoNS patients, and I’ve been very blessed to see kind of what it’s been able to do and what it’s done for people.

Bill Gasiamis 19:56
Wow. Okay, let’s talk the nitty gritty, and then go. Get that out the way, and then we’ll talk about the therapy. What does it cost to access the PoNS, to use the PoNS? How does it all work?

Brody Jackson 20:08
Yeah, so it’s, I’ll be pretty frank, it’s not the most inexpensive thing ever, it will be in Canadian dollars. So sometimes for our American neighbors down south, with the Canadian dollar not doing too good. Sometimes it’s a bit of a deal for them, but I know with the Australian dollar and us, we’re kind of very similar right now, it ends up being about so we get it straight from Helios. So I don’t want to necessarily state too many prices publicly, just because other clinics and facilities do use it.

Bill Gasiamis 20:43
They may use points accessing the the service rather.

Brody Jackson 20:47
Yeah, absolutely. So the way it works in Canada, at least, is so usually, originally, when PoNS came out, I’ll make it kind of simpler, and I’ll spread back out when PoNS first came on board. It was originally kind of just an on label device for TB eyes and MS, so TBI doesn’t try brain injuries ms, as in multiple sclerosis. So between those two deficits, that was what all the research was done on, and that’s kind of what things were put through for whatever reason, Helius could only get the full green light completely in Canada.

Brody Jackson 21:24
So we were able to see patients very quickly and right away they yes, they’re American based company, but they could only get clearance with MS, and you had to get a doctor’s asset. It was a whole you had to jump through a lot of hoops in America to be able to utilize it. And I know it’s the same kind of deal in Australia as well, I believe, especially under the MS banner, versus here in Canada, anybody can have access to it if you essentially wanted to do it, because it’s a private a private tool usage. So from there, then expanded onto, we could start taking off label patients.

Brody Jackson 22:03
So we could if you weren’t just limited to having TBS or MS, if you had any form of a brain injury or a neuro based deficit, so Parkinson’s, strokes, functional movement disorders, and, you know, chronic, chronic migraines, vestibular concerns or vertigo, you were able to use it up here. So we got so it allowed a lot of people from out of country and across Canada, specifically coming to our facility to use it. So it was pretty easy, it’s because there were no barriers, at least for us, is if you reached out and you were like, I want to do this, or I’ve done my own research.

Brody Jackson 22:43
It could get done, versus it was a lot more of a process in Australia, in the United States, and, for sure, in Europe, which was almost impossible over there. So that’s where we’ve been able to intake a lot of people to kind of skip those barriers.

Bill Gasiamis 23:01
I don’t get why it’s so hard to access. The thing looks like, it looks like the most non invasive thing you could ever possibly do. You pop it on your neck, and you put it in your mouth, and you’re done.

Brody Jackson 23:12
Yeah, there’s a lot of contraindications, that’s why. And that’s mainly because, since you’re sending stimulation, since into your tongue, intro, like orally there’s risks of potential, you know, if you have a tumor, if you’ve got implants, if you’ve got other or histories of oral cancer, those can be significant contraindications to using the device. So there needs to be, obviously, clearance from FDA Health Canada, or, you know, your various health governing bodies, of everybody clearing it. And I think that’s where the limitations have been.

Brody Jackson 23:49
And because, you know, there haven’t been enough populations of various deficits and situations to use it, they can’t comfortably say, fully, good to go. And I think that’s been in the issue in the United States, with mainly the FDA, with with Health Canada, though, however, we’ve been able to get stroke added to the label, which was absolutely fantastic, about a year and a half ago.

Brody Jackson 24:16
And then we’re pretty close. I mean, I would be shocked if we don’t, if we see Parkinson’s added soon as well, just because we’ve been able to run enough clinical trials up here, we’ve been able to use it enough up here, so that list keeps growing of promising research, which has been fantastic.

Bill Gasiamis 24:34
Okay, so what I like about it is there’s a whole bunch of clinical trials going on in the background that is trying to determine the efficacy of this thing, and then also trying to understand it’s, what’s the word, it’s, side effects. It’s, does it have? Is that the right word.

Brody Jackson 24:54
I wouldn’t necessarily say side effects. I mean I’ve only, really only had. Yeah, one individual maybe abused the device, so to speak, where maybe their neurological system was a little bit more heightened for too long, which obviously, when we’re in a heightened state for too long, can lead to a series of neuroinflammatory reactions. Which was not permanent. It was just that individual needed to do a lot more down regulation work, and we needed to kind of coach them on how often they could use the device. But in terms of those contraindications.

Bill Gasiamis 25:31
It’s more is not necessarily better. No dosage is really important,

Brody Jackson 25:37
Yeah, because what’s happening is, because you’re stimulating your brain, you’re basically raising your nervous system. So the way I kind of describe the use of the PoNS is because we’re stimulating in duet, cerebellum, so into that movement cortex of the brain, you’re basically opening up the up again, the ability to Neuroplasticity. And what I describe to most people, want to explain what on earth is Neuroplasticity is our brain is like a sponge. So when we’re born, when we’re a baby, up until we’re definitely into our late teens or early 20s.

Brody Jackson 26:12
If we notice, and for a lot of people maybe listening, they can admit to this, or they watch their kids, their grandkids grow up. Is year over a year, kids get progressively smarter and more advanced, and you just, there’s a there’s a sponge for knowledge. Every year you see these crazy milestones. That’s that brain’s ability to intake information and morph and change and grow. It starts to slow down, or, you know, it’s usually around 25 years old.

Brody Jackson 26:40
And then that kind of, that ability to intake information at a rapid rate stays kind of stagnant up until our usually mid 50s or early 60s. And then the brain’s ability to undergo Neuroplasticity starts to slow down. Doesn’t mean your brain is degrading, it just means that it’s going to take you longer to learn something. So I always say, you know, you could take a five year old and a 70 year old who both never played piano before, and there’s a very good chance that five year old might learn faster than the 70 year old. It’s just how the brain intakes information.

Brody Jackson 27:17
What the PoNS does is, no matter who or the deficit itself is, it puts that brain back into that neuroplastic state that we might have seen when we were in, you know, a young adulthood or in our teenager phase, where that brain is able to intake content.

Brody Jackson 27:36
So we pair that with very extensive targeted physical therapy or very targeted, maybe cognitive therapy or dexterity, anything that’s going to challenge the brain to adapt or advance or tackle potential deaths or limitation. That’s what we pair that with the PoNS, and because the brain’s in a very spongy state, it’s going to learn these patterns at a more efficient rate.

Bill Gasiamis 28:01
Okay, but more is not necessarily better.

Brody Jackson 28:05
No, because again, if you’re over, you’re constantly up here. There’s a there’s risks that that brain is just not going to learn, because it’s like going to the gym every day. You’re not there’s no value at pushing hard seven days a week in the gym, your body, your brain can’t recover, so in that case, your body won’t recover, right?

Bill Gasiamis 28:24
Yeah, okay, understood. Alright, that’s really good to know, actually. So people are not buying the device. What they’re doing is they’re buying access to it or rehabilitation in your organization. So is there a program that they need to do? Is there a minimum number of doses? How does it actually work? Like, how does somebody engage in that kind of therapy?

Brody Jackson 28:57
Yeah, so super easy. So technically, they do own the device. When they buy it, they have to buy it through the clinic that all you get the collar and the mouthpiece. However, the mouthpiece itself is only active for 98 days, so 14 weeks, and then when that and I’ll get back to kind of what the program looks like. But when the mouthpiece expires, then they have the choice if they want to purchase another mouthpiece, only they can, and then we can reactivate that mouthpiece, attach the collar, they can continue use.

Brody Jackson 29:30
So I have people that have been using it non-stop for years, and they just buy new mouthpieces every 14 weeks.

Bill Gasiamis 29:36
Does it stop? Why does it stop working?

Brody Jackson 29:38
I believe that’s what Helius when they did their research, when they did the clinical trials, a lot of their trials were done over 14 week periods, and I believe I’d not entirely certain, but I assume that’s probably where, when they maybe found that the big leaps of gains would start to slow down, or around that 14 week mark, I’ve still had people using it years later that still make gains, but the gains you see usually on the device from weeks one through 14 are pretty significant, if the individual is appropriate for the use of the device. So it’s just the way they’ve set that up.

Brody Jackson 30:19
Now the other theories that they’ve talked about is that the mouthpiece itself may degrade over time with constant usage in your mouth. So these are gold electrodes and built in with copper and a bunch of other stuff. So I think they also feel that wearing this thing for two to three hours a day every day for 14 weeks would potentially wear down the mouthpiece, right? That would be, those are our two overreaching theories as to why there’s a timer built in.

Bill Gasiamis 30:49
Right, and then I would imagine that if it weighs down the mouthpiece, then it’s not as effective. But also you’re getting potentially parts of the mouthpiece entering your mouth.

Brody Jackson 31:01
Yeah, you’re not potentially not getting any efficient product, nor are you. You’re potentially also risking just stuff breaking down that you don’t want. So what they do usually, so the way the program works is you’d purchase the device, it’s active for 98 days. Usually you would come at least how we do it again, different clinics and facilities may do this differently, how we do it and how we kind of mirrored it around. What Helius and PoNS, Helius wanted to do with their PoNS device is they come to our clinic.

Brody Jackson 31:35
Obviously, we would do an assessment head-to-toe to determine what their deficit limitations are. They would then be in our clinic for usually two weeks, generally where they would do 290 minute sessions a day. So they’re doing three hours of therapy a day from there, usually, depending on where they live or kind of what they want. Most people for those weeks, kind of 3 through 14, they would do a lot of the therapy on their own at home, with the guidance of a program we’d provide.

Brody Jackson 32:09
And then they would check in with us once a week, whether it was in clinic or virtually. And then, obviously, the way we do it at our clinic is it’s very flexible, so people can stay here longer if they’re out of town, or they can come in multiple times a week during weeks 2 through 14. It’s really up to them, what they’re comfortable with and what we want to determine. Some people are more independent than others and may need a little bit more support, so they like coming in a bit more. Others, you know, they’re very comfortable with doing their program on their own.

Brody Jackson 32:42
Now in that time are they does the device gather any data? Does it have any other information that you get, that you can get out of it? How does it?

Brody Jackson 32:56
Yeah, so I would say the data that it absorbs so I can do data downloads on my computer. It’s honestly more or less an accountability tool. So it can tell me how much you’re using it, how much time it’s been sitting on your tongue, the percentage of how good the tongue contacts been as well. So I can kind of use that to check in and be like, okay, you know, tongue contact time looks or in the reverse, it doesn’t look good. You haven’t been using it. It’s hanging out of your mouth too much, we need to change this in order so you can get the out of the experience, what you need.

Brody Jackson 33:23
So it’s more or less an accountability tool that the data will it’ll collect. Because the other thing too is with the PoNS, usually we try to aim for about 120 minutes of stimulation a day. So each PoNS session is 20-minute cycles at a time. So you’re not just wearing it for three hours straight, you’re usually doing 20 minutes of gait training, possibly the 20 minutes of balance, maybe 20 minutes of a movement control or other things, and then it does technically cap out at 200 minutes in a day. So some people will do extra stuff, or in session.

Brody Jackson 34:09
If we’re ripping through, we might add in extra sessions in clinic or at home. I might give you some homework to do in the evenings, maybe some meditations, some cognitive work, or which I’ve done for a lot of my stroke patients, I’ve been really getting into doing a lot more dexterity work with, like writing tools and typing tasks and a lot of like man, like fine motor skills stuff, and so I’ll maybe give that to them at home. But that’s kind of how the device is kind of built for their time frame.

Bill Gasiamis 34:37
Okay, so I was under the impression that the pons is really mainly about regaining somebody’s balance, but you’re talking about fine motor skills and dexterity kind of results. So tell me how, it’s how it’s moved on from being just that device that helps to support the or regain the person’s balance?

Brody Jackson 34:59
Yeah. So I think a lot of the early research mainly was to do with, you know, both static and dynamic balance that eventually bled into ambulation because, as you know, if we have no balance, obviously gaits going to be impacted as well. So that’s where a lot of the research was originally done. But you know, when we think about the theory and concept of Neuroplasticity and how the brain learns, is really anything that can challenge that neurological system. Why wouldn’t there be a green light to pair that with PoNS?

Brody Jackson 35:31
So that’s, I think that might be what maybe separates our clinic a little bit differently from maybe other clinics. I’m not too sure, but we started to, you know, again, as I talked earlier, especially because we can take on a lot more off label clients, we started to do specific to them what their deficits are. We were combining it with PoNS, and from there, we were starting to see some success.

Brody Jackson 35:57
So obviously, we don’t have, like hardcore, like concrete data to, like, publish a paper and say, like, yeah, it improves hand function, necessarily. But we were just, we were putting them through their neurological rehab like we would a normal client, and we were combining it with PoNS, and we were starting to see results. And I think that was a big breakthrough for us. And what made us a lot different to to to get people to where they needed to be.

Bill Gasiamis 36:24
Man, I love that. But I thought we were just going to talk about the balance stuff, and this is way better, way more possibility for people to access it for very different reasons and in the same kind of way. Now you must get people who get results, right? What are those conversations like Brady, you’re, they’re at home, or they’re accessing the clinic, whatever they’re doing, but at some stage, they’re noticing results. How does that conversation go? Because that would be really freaky when I remember myself like I’m in rehab.

Bill Gasiamis 37:02
I didn’t use the PoNS or anything like that, but I’m in rehab and I’m noticing, you know, my leg is coming online, and I’m noticing my arm is coming online, and I’m picking things up and I’m taking steps without anybody holding me, and it’s really exciting and rewarding. So what are those conversations like with your patients?

Brody Jackson 37:25
Man, the milestones you get to do with your you get to cross and reach with your patients is kind of why we do what we do. I can’t, there’s nothing better than seeing their reaction to being able to do something in clinic, or their spouse seeing it happen, or their partner, their friend, whoever’s there. It’s such a special moment. And it’s not even, I can’t even describe it. It’s not even a conversation, it’s like a moment of celebration, right? So it’s, you know, a big thing that we talk about with our patients is we, you know, we try to temper their expectations simultaneously going into it.

Brody Jackson 38:04
Because, as you know, everybody knows whether it’s a neurological injury or a physical I carry your shoulder based injury. Everyone wants to be better yesterday, and then they’ve tried, maybe they’ve tried everything, they’ve stalled. They’re not getting better, they come across a really new, exciting program, or in this case, device or technology, and their brain jumps about 14 steps forward into what they expect is going to happen immediately. So the big thing that we always talk when in clinic is, you know, to celebrate those stepping stones.

Brody Jackson 38:44
It’s not about goals 1, 2 and 3, it’s goals 1.1, 1.2, 1.3 leading up to goal 2.0 and I think those are what’s super special. And I think especially because we do that intensive first two weeks, that’s we spend a lot of time with the individual. You develop a really cool relationship with them generally, and from there, you’re celebrating along the way, because everyday compounds. It’s really tough, it’s not easy. It’s probably, for most people, it’s one of the harder things they’ve probably ever done.

Brody Jackson 39:21
You know, a lot of individuals, most really healthy, active individuals, don’t even exercise three hours a day anyways, let alone someone who’s now suffered a neurological deficit. Maybe they’ve been struggling with it for years, and we’re not afraid to push their buttons. So it’s a really cool, active conversation as the program progresses, because there’s a lot of, as you maybe know, there can be a lot of psychosocial deficits, or limitations that come alongside major life altering deficits, right?

Brody Jackson 39:54
And so it’s a constant, organic conversation of we celebrate these little things. It’s going to be really hard. This is a really good thing. You should be proud like, and it’s just building on those pieces, right? So it’s a really fun it’s a really fun time.

Bill Gasiamis 40:12
I love that you have that idea of, you know, got a milestone one and then milestone 1.1 and then milestone 1.2 so it’s like, the same milestone, but it’s not about like, just smashing it out and getting to the the goal, whatever it is like, say, it’s I need to be able to run again. It’s like “Well, okay, let’s change your gait, let’s watch your gait. Let’s improve your gait. Let’s improve the way that you walk.” And then, once you’ve done all the other improvements, it’s like, let’s continue improving in that space, rather than, let’s just get out there and start running.

Bill Gasiamis 40:57
I love that idea. What happened to me right now was you’re describing how the PoNS works, and then how you’ve decided, how the organization has decided to start using it in for people, for different things. And it reminds me of the conversation I had with a couple of the guys from a Aviv Clinics and their hyperbaric oxygen therapy. And they have a room, a chamber, a massive chamber. It’s like a room, you walk into the chamber, you sit down, and then they take that person through a hypoxic brain episode by increasing the oxygen level and then decreasing it to normal levels.

Bill Gasiamis 41:41
The brain thinks it’s going hypoxic, and you can really positively impact the neuro regenerative part of the brain, feeling like when the brain goes hypoxic, what it does to kind of try and stay alive, and in that time, what they do is they ask patients to do different things depending on the deficits that they have. They ask them to stand up and sit down, or they might ask them to write, or use one of their affected limbs, etc. And the whole idea is to intervene right at that time in the same way when the therapy is being delivered.

Bill Gasiamis 41:43
And I love that I’m seeing this pattern now, kind of in a number of different fields of therapy, and it seems like it’s a real a real easy, well, easy I’m going to use the word is because I don’t know another word, but a real easy way to manipulate in a positive way, the brain, so that neural pathways reroute, find another way, or whatever the word is, and then wire and fire and kind of stick is, do am I describing it correctly? Is that what we’re doing?

Brody Jackson 43:09
Yeah, no, I think that’s the best, I think that’s the best description, it’s putting the brain in a new, almost stressed situation, with new pathways during repetitive movements, trying to lay down to learn a new thing, and from there, that brain is going to acquire that skill acquisition, it’s again, it’s no different. I always talk to people too, both because sometimes it’s so funny, because, like with clients, they get frustrated, because it’s like, why are we hammering this same gait pattern over and over and over and over again?

Brody Jackson 43:46
And they lose their minds about it, and I say “You know, it’s no different. If you walked up to a to a guitar, you’ve never played guitar in your life. Every day you pick up the guitar, you’re going to go try to play a different song every day. No, it may make no sense. You’re not going to learn, you can’t. If you’re going to learn something, you have to be able to repetitively do it and learn it and constantly grow and build off of that.” And I find that in therapy and even in exercise, this is even going to talks like general gym goers.

Brody Jackson 44:21
Everybody wants to be entertained, and I find that they need to do many, many, many, all kinds of things, instead of narrowing down and getting really good at certain stuff. And that’s no different than when it comes to physical therapy. In this case, neuro rehab is, it’s not circus, it’s purpose. We’re here, I’m not going to make you stand on one leg and jump up and down on a BOSU ball because it looks, because Instagram told you it looks cool. It’s, there’s no function. There’s no reason you need to be able to do that.

Brody Jackson 44:54
So we focus on the pathway itself, and it’s repetitive, and it’s, we have to stress the brain to lay down that new pathway, and from there, that’s how that brain acquires that new skill set, and then it becomes natural.

Bill Gasiamis 45:08
I’m going to test your pop culture knowledge and your age. It’s wax on, wax off. It’s paint the fence, Mr. Miyagi, he taught us in the 80s.

Brody Jackson 45:18
Karate Kid, I’m older than I look.

Bill Gasiamis 45:23
It’s Mr. Miyagi. It’s like, why am I painting the fence? Because Danielson, you have to paint the fence mate, and then once you paint the fence a million times, then you’ll have that float in the hand motion to be able to block or to deflect, or whatever he was teaching him to do with the karate kicks right and then. And if you haven’t watched karate kid and you’re listening to this podcast, go and get Karate Kid and watch it, please, and you’ll learn something about Neuroplasticity that Mr. Miyagi was telling us in the 80s that we didn’t realize was actually a lesson on Neuroplasticity.

Bill Gasiamis 46:08
Is exactly what it was. It was a amazing thinking back on that show, an amazing example of how you develop a something that appears second nature, how you develop it. You develop it from doing it a long, long time driving is a classic example. I remember being 16 and getting my learner’s permit and then trying to convince my dad for the next two years to let me drive every opportunity that I got. And I remember having this conversation vividly with somebody I used to work in. I used to work in a hardware store, and there was an older guy there.

Bill Gasiamis 46:47
He would have been 28 at the time, and I was telling him how I was struggling driving. And he goes “Yeah, you’re struggling now, because it’s all new, and it’s a big hunk of metal and all these things that you’ve never had to deal with before. But by the time you’re 28 you’ll be driving, and you won’t even think about it.” And I remember him saying, like, you’ll get somewhere, and you won’t even know how you got there, because it’s become second nature, and it’s because of the amount of hours that you’ve spent behind the wheel retraining.

Bill Gasiamis 47:16
You know that part of your hand and your leg to work together, and that part of your brain and your eyes and your ears to do all the things they need to do to drive a car and keep it on the right side of the road and make it look effortless. So I often think about that when I’m trying to get my head around how long something takes to really master it. And you know, you hear the whole other reference to the 10,000 hour rule that to get become masterful, it’s something you have to spend 10,000 hours practicing it or doing it.

Bill Gasiamis 47:56
And I don’t know if we need to spend 10,000 hours to get results in stroke recovery, but the more hours we spend, in a kind of lovely way, in a way that’s not too many hours in a short amount of time, and it’s not over stimulating the brain, and we are allowing for rest and recuperation, and we are allowing ourselves to have down days. The more time we do that, the more results we get. It’s just impossible not to get a positive result by doing something like a physical therapy, whether you’re doing it with somebody like yourself, Brody, or on your own at home.

Bill Gasiamis 48:39
That’s kind of been my whole little way, to motivate people. So anything you do to help you walk better doesn’t matter how hard it is. Is getting you a positive outcome, if you’re not doing it, you’re not getting a positive outcome. In fact, you’re rewiring the brain in a negative way, in a way that’s not supporting recovery of the thing that you want to recover. So I’m glad that we’re having this conversation and that we can possibly open people’s eyes to something else and another device and another way to think about recovery. It doesn’t have to be in the gym.

Bill Gasiamis 49:21
It doesn’t have to be necessarily in a clinical environment, it can be just by putting this thing on your tongue and standing there. You can YouTube Cheryl Shiltz and pull back your reader, and you’ll find the original video that the team took when Cheryl first puts the device on her tongue and starts to rewire her her balance, and then how it develops over time, and then how she goes from not being able to walk to being able to ride a bike.

Bill Gasiamis 50:00
And then bragging about the fact that she’s riding the bike while they’re recording her on a car next to her, or something like that, perhaps on another bike next to her. It’s just a completely it’s an amazing thing that was it, that it was even discovered, and here we are now. We’re talking about 30 years later, and the PoNS device exists. I mean, it’s phenomenal, I love this stuff.

Brody Jackson 50:25
Yeah, no, it’s been, like I said, it’s been it’s been fun. I mean, there’s been so many just incredible client success stories and just again, cool milestones, do different deficits, every day is just so neat. And I mean, every it’s cool, because every Friday we meet as a team, and we always kind of, do you know, client shout outs, and we kind of round table, and it’s really neat, because it’s people are sharing such cool stuff with their regular patients, obviously, as well. But if there’s someone in the door that’s going through our PoNS.

Brody Jackson 50:58
It feels like every week we got something cool to share, and it’s, and they become connected to you, right? Like, I still talk to a huge number of individuals who went through this program that you know, still check in with me all the time. I still talk to them, they still update me. They still come in every once in a while, still years later, and it’s really neat. And, you know, there’s always room to make improvements, and there’s always room your therapy just doesn’t stop. You know, I know it can be for a lot of individuals, it can be really tough, right?

Brody Jackson 51:34
So hold, it’s a big life change your life’s upside down. Things change, things are very difficult, and maybe you’ve tried various forms of therapy and recovery, and things have been very limited, right? But I do want to let people know that, you know, don’t be like, always be hungry. I always tell people this too is, you know, I get one of the things, it’s interesting, is a lot of my patients come in and they get frustrated. The first week is really tough, the nervous system’s on fire, they’re exhausted.

Brody Jackson 52:11
And again, they come in thinking that they should be up here three days into the PoNS program, and they’re upset, they’re emotional, and then they started apologizing me profusely, and I tell them, like “Don’t apologize. I want you to be hungry. I want you to not be satisfied with where you’re at because that’s going to keep pushing you the second and one of you know, it’s cool.” because there’s always one quote that’s always stuck in my head I tell all my patients.

Brody Jackson 52:47
This is it was an old ice hockey coach of mine when I was a child, and he coached me for years, and one of the things he told me is “If you’re not uncomfortable, you’re not growing.” He says “The second you get the second you get comfortable, whether it’s in sport, whether it’s in life, in school, at work or in a relationship, when you get too comfortable, things go sideways, and if you’re always uncomfortable or something, an event or situation is making you uncomfortable, you will grow from that, and you’re going to grow from it. And it won’t become uncomfortable again.”

Brody Jackson 53:27
And so I use that a lot with my patients. I go, you know, if this stuff was comfortable for you and easy, you wouldn’t be here. So I want this to be if you’re uncomfortable right now, and this is tough, means we’re growing, and that’s how the brain grows under stress, the body grows under stress. It’s you stress, it’s good stress.

Brody Jackson 53:46
And that’s a big thing we talk about with our patients is, you know, it’s okay to be frustrated and want more, because that’s going to drive you. If you’re always wanting more, you will get more. Yeah, so that’s all. It’s just being hungry, right?

Bill Gasiamis 54:06
I agree being uncomfortable is uncomfortable, though, and you have to wrap your head around that it’s something that you should look forward to. You should what’s where you should get comfortable with being uncomfortable. Yes, it’s hard to work it out, but once you are comfortable with being uncomfortable, then you’re going to go into uncomfortable situations. So they won’t be so traumatic, or they won’t be so hard to do. I’ve had to do that with public speaking, and you have to go into a room, you have to talk.

Bill Gasiamis 54:47
People have to, you have to get them engaged and make them not fall asleep. So you thinking about that, there’s only one way to do that, is to go and test your your particular presentation, and to see where it bombs, so that then you can refine it so that it bombs less the next time you do it, but you have to expect it to bomb a little bit, and that’s even more uncomfortable in an uncomfortable situation, when something bombs and you’re already feeling icky and uncomfortable and things are hard and it goes bad.

Bill Gasiamis 55:21
Well, you’ve got to just know that it’s actually just part of the process. It’s just part of the way that you learn and that you fine tune your skill and you do those 10,000 hours, that’s the way they are. All the 10,000 hours aren’t beautiful and lovely and perfect. There’s a lot of harsh, terrible lesson learning hours that you have to go through now, the people who got you and I together. I would describe it as a little, a few reservations as to whether or not they should take action and invest in a program of this kind, because they’ve never seen something like that before.

Bill Gasiamis 56:08
It’s really strange, what are the some of the things that people kind of have reservations about with this product, and how do you kind of try and make them feel okay about giving it a go and investing in it. I’m not trying to do the sales spiels, but I am trying to sort of tell people that, all right, this may look weird, you may not understand it, but I also am the kind of person who is the like, don’t knock something unless you’ve tried it.

Bill Gasiamis 56:08
But that’s not enough to convince somebody to use a device like this and to spend the money on it, on the whole thing. So I’m just curious about that. How do we move people from being feeling like a little bit unsure, to actually becoming somebody who’s willing to try it?

Brody Jackson 57:00
Yeah, so obviously, one of the big, I mean, I’ll be very upfront, the biggest barrier we find, at least initially is, obviously, there’s, it’s a big commitment, because there’s a big cost commitment attached to that, especially if you’re out of country, you gotta fly here. You gotta accommodations, like it’s not just a vacation, it’s now you’re committed into also a paid therapy program as well. So that’s always going to be the first and foremost.

Brody Jackson 57:31
I mean, that’s always the biggest thing, no matter what, even for people that are local here to Austin, British Columbia, or just leaving local, just within Canada is that it’s obvious, it’s always going to be cost, especially in this day and age. Economically, everybody’s always got that top of mind. But out notwithstanding, that the next kind of thing that we find is, again, it’s just that unknown. I think you know a lot of people who come to us that want to know more about PoNS. Thankfully, they’ve done all. A lot of them have done, already done their due diligence.

Brody Jackson 58:07
They already know. Like, I don’t have to not say waste, but I don’t need to explain to them for 15 or 20 minutes what it is or how it works. Most of the people come into us, they’re like, I know exactly what this is. I just need finer details. Let’s, let’s kind of get this going. But for the people that don’t know what this is, and it’s kind of a little bit more of a organic segue into it, it is, exactly that is. It’s explaining to them, because they don’t sometimes they can’t wrap their head around, you know, stimulating their tongue that’s going to make me do all these things.

Brody Jackson 58:46
Or some people, they find, if they’ve kind of exhausted their therapy, so to speak, like it’s been years and they’ve been struggling with for a long time. They say they’ve seen everybody under the sun and they can’t figure it out. They want to, well, how do I know? Again, circling back to the cost thing, they’re going to say, I’ve tried everything already. Why should I go do this? So it’s sometimes, you know, it’s what I usually do with our patients.

Brody Jackson 59:14
And so a lot of our other therapists, we just lay everything out very clearly, it’s not, we never do this as like a sales pitch. That’s not how I approach that. It’s I go look, this is what it can do, this is how it the program structured. The end of the day, it’s no different than them continuing to do therapy every once a week or twice a week for a year would most likely be the same cost to what a really intensive 14 week program is going to be anyways, when the dust settles. So I always map it out as it’s an accelerated way to kick start in a far more detailed therapy regimen.

Brody Jackson 59:58
Is that’s kind of how I supply and then I layout, no, I give people data, I give people studies, I’ve lot videos. It’s more just educating, because a lot of people just don’t know it’s a lot of it’s very foreign. And I think when people fear the unknown, and if they don’t understand it, the guards come up. And I think that’s just how the this day and age has been to as well, especially with just the rise of misinformation or the rise in stuff circling through social media is there’s a lot of content out there that is right, wrong, garbage, false, manipulated.

Brody Jackson 1:00:37
So if people don’t understand, the guard comes up immediately. So, we just try to educate them, we give them every tool and conversation that we need for it. And I would say the vast majority of the time, they end up proceeding, and we end up getting on with beginning.

Bill Gasiamis 1:00:58
Yeah, sounds like it’s just literally about making an informed decision, and absolutely everyone has a different time frame that gets them to pull the trigger or not, and that’s okay, whatever that is. I mean, we’ve done exactly what I wanted to do today, on behalf of two people who don’t know whether they should use the product or not, whether they should go down this path, and that is and what I’ve done is we’ve discussed all the ins and outs, the history, where it’s at how it works, the applications. We’ve discussed that.

Bill Gasiamis 1:01:41
So I think we’ve given people a whole bunch more information that they can consider and maybe help them make a decision about their rehab, especially the people who are early on and all the stroke recovery stuff is overwhelming. Everything is overwhelming, and then I love that idea of all so people who have perhaps been out of the system for a little bit, and thought I’ve tried everything, nothing’s worked, I’m done for now. And then they stumble across this somewhere.

Bill Gasiamis 1:02:11
And they think maybe I should give it a go, if you can manage it, I would encourage people to never, ever look at ways to continuously try to find ways to improve your life, your quality of life, your function, your independence. Go for it, I mean, what do you got to lose? So thank you so much for joining me and being so gracious and teaching us about the PoNS and what you guys do, if people wanted to find out a little more about your organization, where would they go?

Brody Jackson 1:02:50
Yeah, so they obviously the easiest place I can, also include it in. I think we got a little chat box, so I can also send you some stuff.

Bill Gasiamis 1:02:59
Yes.

Brody Jackson 1:03:00
But obviously our website, which is at neuropeak.ca, is going to be the best place to go. First, it shows all the services our clinic offers, in general. And then from there, they can also see we’ve got a whole section on our PoNS. And from there they can reach out, obviously, to us via that website.

Brody Jackson 1:03:26
So we have our info email. There’s also my email as well, that’s where all our contacts easy to find via our website. We try to keep things very clean again. Our goal is to not overwhelm people we don’t want to, especially, you know, knowing our demographic and knowing who we work with, we don’t need to make a system complicated. So obviously, also, you know, they’re more than welcome again. PoNS is a very public device.

Brody Jackson 1:03:55
Now, they can Google it, or whatever search engine they use to look through PoNS, there’s lots of cool articles and stories, lots of testimonials. You’ll see both via either link to our website or link to other news articles or lots of YouTube videos, especially with Montel, that they can follow along and learn a little bit more about it. But it’s very easy to get access information.

Bill Gasiamis 1:04:20
I’ll make sure that all the links are in the show notes. Anyway, thank you so much for joining us on the podcast.

Bill Gasiamis 1:04:25
No worries. I appreciate your time, Bill. Thank you for having me.

Bill Gasiamis 1:04:29
Well, that wraps up this excellent episode with Brody Jackson, his passion for helping stroke survivors and his work with the Helius PoNS device is giving people real results and real hope, especially those who have been told they plateaued or that recovery is no longer possible. From helping clients walk again to improving fine motor skills and even handwriting, the PoNS device is truly redefining what stroke rehabilitation can look like if today’s episode. It opened your eyes or to something new, or reminded you that recovery never really ends.

Bill Gasiamis 1:05:06
I encourage you to check out Episode 200 of this podcast with Cheryl Shiltz, the first person in the world to use this kind of technology. It is so powerful, emotional and enlightening, and it shows just how far Neuroplasticity can take us. Please remember to like, subscribe and leave a review on iTunes, Spotify, or wherever you’re listening, and if you’re watching on YouTube, leave a comment below and share what inspired you most about this episode.

Bill Gasiamis 1:05:37
You can learn more about the clinic that Brody is based at by going to neurospeak.ca, and I’ll include all the links in the show notes we mentioned earlier. Finally, if you’d like to support this podcast, you can visit patreon.com/recoveryafterstroke. Every bit of support helps me cover the cost of the podcast and continue to bring valuable insights and stories like this to stroke survivors around the world, thanks for being here until next time. Keep going, stay hopeful and remember your recovery is still happening, one step at a time.

Intro 1:06:14
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 1:06:44
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Intro 1:07:09
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The post Unlocking Neuroplasticity: How the Helius PoNS Device Rewires the Brain After Stroke appeared first on Recovery After Stroke.

When I first began recovering from my three brain hemorrhages and brain surgery, I didn’t know there was such a thing as post-traumatic growth. I had never heard the term before. All I knew was that I was dealing with grief, anxiety, confusion, and the loss of the identity I once had. Like so many stroke survivors, I felt like life as I knew it had been flipped upside down.

But something else was happening, quietly, in the background. Even in the darkest times, I started noticing small shifts—signs that something deeper was unfolding. I was growing, even when I didn’t know it.

Post traumatic growth (PTG) is a concept developed by psychologists Richard Tedeschi and Lawrence Calhoun in the mid-1990s. It refers to the positive psychological changes that can occur as a result of struggling with trauma. It’s not about bouncing back. It’s more about bouncing forward—finding meaning, purpose, and a new identity because of what you’ve been through.

It’s personal. Trauma looks different for everyone. For some, it’s a stroke. For others, it might be the death of a loved one, a diagnosis, or a major life upheaval. What matters is how it shakes you—how it overwhelms your ability to cope in that moment.

And what matters even more is what can come after.

It’s important to understand that post-traumatic growth is not the opposite of PTSD (Post Traumatic Stress Disorder). In fact, they can exist together.

PTSD often brings flashbacks, anxiety, fear, and reliving the trauma. Post-traumatic growth, on the other hand, brings meaning, strength, gratitude, and connection. It’s not that the struggle disappears—it’s that, in the middle of it, new possibilities begin to take shape.

You can grieve and grow at the same time. You can be hurting and healing. And even if no one’s ever told you this before—you can be changing for the better, even in the middle of pain.

Tedeschi and Calhoun identified five key domains where growth can occur after trauma. I didn’t know these existed when I was recovering, but I can now see how each one of them showed up in my life after stroke.

After nearly dying, I became more grateful for the smallest things. The noise my kids made. The dinners we shared. The fact that I was still alive to witness their lives unfold. Before my stroke, I took a lot for granted. Now, I take very little.

Before stroke, I wasn’t the kind of person to start a podcast, write a book, or speak publicly about my experiences. But during recovery, I said yes to new opportunities. Life opened up. I tried things I’d never done before. And in doing that, I met people, found a voice, and created a new version of myself.

Like many survivors, I once thought, “I could never get through something like that.” But when you’re backed into a corner, strength shows up. I found a part of me that could get through anything. A resilient, determined version of me I didn’t know existed.

Some relationships deepened—especially with my wife and kids. Others faded away. I created new boundaries, said sorry when I needed to, and began to connect more honestly with the people I love. Stroke helped me become a better husband and father.

I started asking big questions. Why me? And the answer came quickly: Why not me? I realized that life wasn’t guaranteed to be easy or fair. That truth woke me up. It helped me stumble into my purpose—supporting other stroke survivors—and led to the work I now do through my podcast, book, and coaching.

You don’t have to check every box, and it doesn’t all happen at once. But here are some signs that PTG might be unfolding in your life:

Here are a few things that helped me—and might help you too:

So many people say they want to get back to who they were before their stroke. I get that. But I also believe that the person you are becoming might be someone even more powerful, compassionate, aware, and purposeful.

You don’t need to go back. You’re already on your way forward.

Post-traumatic growth is more than survival—it’s transformation. Discover how stroke recovery can lead to purpose, strength, and renewed life.

Highlights:

00:00 Understanding Post-Traumatic Growth
02:22 Differences Between PTSD and Post-Traumatic Growth
04:45 The Five Domains of Post-Traumatic Growth
11:57 Spiritual or Existential Change and Finding Purpose
16:27 Signs of Post-Traumatic Growth and Practical Tips
23:18 Growing Into Somebody New

Transcript:

Bill Gasiamis 0:00
One of the topics I’ve wanted to talk about now in a little more detail for a while, is post traumatic growth. It is a topic that I touched on briefly in my book, because ultimately, that’s what my book is all about. It’s all about post traumatic growth after a serious health incident. In my case, post-traumatic growth after three brain hemorrhages and surgery. And post-traumatic growth is basically positive growth after trauma.

Bill Gasiamis 0:33
It is not bouncing back per se. It’s more like moving forward or bouncing forward, and it is based on real psychological research done by Lawrence Calhoun and Richard Tedeschi in the mid 1990s so trauma is personal. What is traumatic to me may not be traumatic for you. It’s basically anything that overwhelms your ability to cope. It can be emotional, it can be physical, or it can be mental. My story was pretty dramatic at the beginning, and what I didn’t know was that I was going through post-traumatic growth while I didn’t know about it. I didn’t know that it was happening.

Bill Gasiamis 1:20
It was occurring in my life, but I didn’t know that it was happening, and I had nobody to tell me that even though I was going through a really terrible time and things were difficult, there was definitely post traumatic growth occurring, and it would have been nice to know it so I was struggling with grief, Anxiety and identity life, just like most stroke survivors. And at some point though, I started to notice changes, like a deeper appreciation for life. The thing about it is I didn’t know that that meant anything special.

Bill Gasiamis 1:55
Although it was oddly obviously special to experiencing appreciation for life, perhaps something I hadn’t reflected on before, but it wasn’t something that was at the top of my mind. I was doing it without being mindful, without being aware of the fact that I was appreciative. I mean, I nearly died, so I was just appreciative that I was alive and that I was still going to be around my family and my children. So Tedeschi and Calhoun coined the term post-traumatic growth in the 1990s and they found that trauma can lead to transformation.

Bill Gasiamis 2:35
And they identified the five domains of post-traumatic growth now. PTSD and P, T, G, post-traumatic growth are not the same thing, and they are not opposites of each other. They are different. For example, PTSD equals fear, anxiety and flashbacks, and a lot of the people who experience PTSD describe it as being right there in the moment when the traumatic event took place. They’re reliving it on a regular basis, or in times and moments. That’s unexpected.

Bill Gasiamis 3:17
Now, post-traumatic growth equals a deeper meaning. It means gaining strength and finding deeper connections with other people that you didn’t have before. And what’s really interesting about it is that you can experience post-traumatic growth at the same time as you are experiencing PTSD. So because PTSD is not something that you’re constantly, always going through, it has moments of calmness. In those moments of calmness, people may not be aware that they are experiencing post traumatic growth, and that from time to time.

Bill Gasiamis 3:59
The post-traumatic growth is provides sort of like a buffer between the previous traumatic triggering moment to the next traumatic triggering moment, but they can coexist together. So the growth in post-traumatic growth doesn’t mean that the struggle goes away that the struggle is over. It means that in amongst the struggle, call them the dark times, or the difficult times, there are moments of light, there are moments of overcoming, there are moments of fighting back. There are moments of getting better and growing. You can breathe and grow at the same time.

Bill Gasiamis 4:42
So it’s not like you have to pause one thing and do the other thing. No, you can go through grief of losing the life you once had, but you can be very happy that you are achieving new things or overcoming challenges or seeing positive changes in. Your recovery and getting further ahead in your recovery than you were before. Okay, so let’s talk a little bit about the five domains of post-traumatic growth. So the five domains of post-traumatic growth are as follows. First, it is appreciation for life.

Bill Gasiamis 5:17
So basically, the little things about them all I went through that when I started to realize how lucky I was to be at home after the first second and third blades, and to be still alive and to have access to all the tools that I had access to to help me in my recovery journey. I also appreciated the little things more, like the kids being around and making noises and complaining and whinging and being teenagers while they were in the house that I was in recovery. See, they are things that I didn’t think about I would miss if I wasn’t around.

Bill Gasiamis 5:57
And now that they have grown up in the last 10 years and moved out, I often reflect back to the time when I was grateful that they were upstairs and making the noises in the middle of the night like teenagers would, and they’re not there at home doing that anymore. So I very much am aware of those little things that I’m more appreciative about now, when they come home and we interact at dinner and we sit together as a family once more, it’s an amazing time. It’s probably the most fun time I could experience in my week, all the four of us, my wife, my two boys, being together.

Bill Gasiamis 6:39
It really is something that I appreciate more than I’ve ever appreciated it before stroke, I was just not aware that those were important things. I thought that they were silly things that kids did, and I had to make sure that they didn’t step out of line and that they didn’t do them at all, rather than being understanding and giving them an opportunity to be children while trying to express my needs for them to not be so rowdy.

Bill Gasiamis 7:12
I used to get really angry, and I used to get really upset with the fact that they were up there being teenagers like as if I wasn’t any different when I was growing up and when I was a teenager, they were just being normal, and I was seeing it through the lens of a grumpy old man. One of the other things that happened for me was that I started to see new possibilities that weren’t there for me before. The old me is not this guy. The guy before stroke is not the guy that goes around creating vlogs.

Bill Gasiamis 7:49
The guy before the stroke is not the guy that has a podcast, has written a book, taught talk publicly about stroke and stroke recovery. Had the opportunity to raise awareness about stroke, the old me wasn’t that kind of guy, and all of a sudden, during my stroke recovery, I started to see these new possibilities. I’m not sure what it was, but I made the decision to start having experiences that I’d never experienced before. Perhaps I was afraid to experience it. Perhaps I didn’t know if I would be judged if I experienced those things. I’m not sure why I never did them.

Bill Gasiamis 8:31
They weren’t in my radar. So when the opportunity came up after stroke, I thought, I’m going to experience life, all sorts of life, different versions of life, that I’ve never experienced before. And I was looking forward to be in a position where something new would come my way, and as a result, new things came my way. I was on the radio. I was on television being interviewed for the news. I was involved in a television commercial for the health insurance provider Bupa. On behalf of the Stroke Foundation.

Bill Gasiamis 9:05
I represented the Stroke Foundation at the Cancer Council, where they were talking about the risks of stroke and smoking. I just did all these things. New possibilities were coming out of everywhere. And the truth is, perhaps they were before, but before I would be most likely saying, No, that’s not for me, or I don’t do those kind of things. I didn’t have an identity that was curious and was willing to do something new, because I was afraid of judgment. I was afraid what other people would say, and I didn’t want to experience that.

Bill Gasiamis 9:44
And that probably leads to the next domain, which is personal strength that I found a way to make it through. And I experienced this resilience that I hadn’t had before. You know, when you come across somebody. That says I don’t know how I would cope if I had to go through the things that you went through with your stroke. I used to be one of those guys, oh man, you’re amazing. You can do that. I don’t think I could cope if I was going through what you were going through.

Bill Gasiamis 10:16
Well, back into a corner and with no other choice, I found personal strength that I didn’t have before I was able to grip my teeth and get tough and find a way to get through all of the difficult times. And that was an amazing thing for me to become aware that I was doing, because I never thought it was possible for me to be such a strong guy, one of the things that also came, which is the next domain, is improved relationships, so closer connections with my loved ones and people that I appreciated being in my life.

Bill Gasiamis 10:58
And then new boundaries with people that perhaps were a little difficult for me to have around in my life and weren’t really adding value. Maybe they were the relationship was all about them, and my decision to create boundaries around myself with people like that improved my recovery, my relations improved in lots of areas, firstly, with my children. I even went out of my way to apologize for all the silly things that I had done as a parent in the past before I become a stroke survivor. I The relationship between my wife and I improved and strengthened.

Bill Gasiamis 11:48
Because whatever it was that we had been through before stroke, it was nothing compared to what we were going through now, even at the time when I was in my hardest place, she was always around there. She was supporting me, and often she was supporting me by putting herself second. And that made me realize how loyal she was, and that helped to improve my connection with my wife. And it was an amazing experience. Again, I didn’t know that this was part of post traumatic growth.

Bill Gasiamis 12:25
Now, the final domain, the fifth domain, and these domains are in no particular order, was spiritual or existential change, and people who go through something traumatic will often rethink their beliefs and their life’s purpose, and I was definitely rethinking my life’s purpose. Now my beliefs didn’t change much, but I asked myself, just briefly. I asked myself, Why me? And then the quick response that I got the answer was, why not me? And that response that why not me? Response was the one that really got me moving into a different positive direction.

Bill Gasiamis 13:10
I realized that I wasn’t somebody special, that I was going to go through life without being impacted negatively by something in my life, I realized I was not the kind of person who was going to be unscathed about life, if you like. And that kind of made me grow up a little bit, and it made me realize that I need to, I need to prepare for the worst. I need to expect the best, but prepare for the worst, and that’s what I went about doing.

Bill Gasiamis 13:46
I went about preparing myself for the worst possible situation so that I would be in a better position to respond positively if I had ever found myself in a negative situation. Again, my spiritual beliefs didn’t change much. I didn’t attend church more or anything like that, but I did wonder and consider whether or not there was a God and what God had in store for me. And I did accidentally stumble into my purpose. And I didn’t realize that I was stumbling into my purpose.

Bill Gasiamis 14:21
I didn’t realize that I was going down that path at all, but all the steps I made to connect with stroke survivors. Share my story, share the things that I had learnt about stroke and stroke recovery, meet new people, start the podcast and share about the book made me realize that I was on my on my purpose, that I had found my purpose in life, and I thought that I had a purpose in life before stroke, which was my family and my children, but that was quite a shallow purpose. Is clearly very important to have that part of your life as part of your overall purpose, but it’s too narrow.

Bill Gasiamis 15:09
It’s only about me and them. It’s not about other people. And I think everybody’s purpose in life is really something that emerges by doing something for somebody that you expect nothing in return for and while you are doing these things, you might find yourself on purpose, but it’s not what you set out to do. So overthinking it and trying to come up with, why am I on this planet? What’s the point of being on this planet is not going to help you find your purpose. You’re going to find your purpose by basically just doing things to help other people that you expect nothing back in return.

Bill Gasiamis 15:52
And I found my purpose. And it was around episode 70, when I really had that aha moment, and I said, I think strokes the best thing that happened to me, because all these five domains of post-traumatic growth had become apparent to me. I had appreciation for life. I was exploring new possibilities. My personal strength was stronger and more resilient than ever before. My relationships had improved, and I had experienced spiritual growth and existential growth, I started to discover my why, and that was something that I had never stumbled across before.

Bill Gasiamis 16:33
Even though I didn’t realize that those five things make it that I even though I didn’t realize that those five things are part of post-traumatic growth, because I didn’t have the term or the word for it yet, that’s exactly what it was that I experienced. So you may have noticed in this video that you are experiencing some of the signs of post-traumatic growth. You may have noticed that your values and priorities after stroke have shifted, and so they should it really should be about you.

Bill Gasiamis 17:14
It really should be about you finding the path forward that is going to make sure that you have a fantastic recovery, that you have growth, that you make meaning, that you find a way to give meaning to this situation that you found yourself in. You may have noticed that you have new perspectives in life that you see things way differently than you had ever seen before, and you may have noticed that you are more grateful or mindful even on the tough days. You know being mindful of the tough days might be that you’re at a coffee with a friend.

Bill Gasiamis 17:59
And instead of being distracted and paying attention elsewhere and looking on your phone, what you are is your present. You’re in the moment, and your appreciation for being in conversation with that person is something that you hadn’t practiced before. You hadn’t paid attention to the fact that you were still able to attend to your friends, be at an amazing place, experiencing a deep conversation, and that that is important part of life, that that is a very important part of life, you may just be going through the motions previously.

Bill Gasiamis 18:40
And now you’re realizing that even those small moments of somebody reaching out and asking you, How can they support you or help you during those difficult days make things better, and they are signs that you are already growing. So I want you to reflect back on your life and pay attention to whether or not you’re ticking any of those boxes, so that you can be aware that you might be growing. So if you want to get some momentum in shifting between a PTSD type of experience to more post-traumatic growth.

Bill Gasiamis 19:21
These are a few things that might help you take that step a little further than where you already are in your recovery. So you might want to reflect on your experience, your daily experiencing, by having a journal or by making voice notes if you can’t write, and by having some quiet time where there are no distractions and you can just sift through your thoughts and pay attention to what’s coming in and out of your head, you may want to talk to somebody. And by that, I mean you may in. May be as simple as peer support.

Bill Gasiamis 20:01
Just get in touch with other stroke survivors and share experiences and understand what it is that they’re going through, and see where the similarities are, and maybe get some understanding of how they’re dealing with the situation that they’re in. But then also you might want to get professional support, which is something that I did a lot of I got professional support, and I spent a lot of time in therapy. Because what I found with therapy was it’s non-judgmental. I can go there as myself, and if the counselor is any good, they will allow me to be myself.

Bill Gasiamis 20:38
They won’t judge me, and they will allow me to express myself in all the weird and wonderful ways that I might and perhaps offer things for me to reflect on, and tips and tools to help me look at the way that I’m going about my life, perhaps to look at the way that I’m talking to myself, support me In changing some of the conversations that I’m having having in my head, and give me an understanding of why people behave the way that they do after stroke, and not just me, but also the people around me.

Bill Gasiamis 21:11
For some people, they didn’t really go about behaving in an appropriate way after stroke, and instead of getting annoyed and upset with them, what would have been a better thing for me to do was try and understand them and not take it personally and even forgive them, perhaps not to their face, but in my own quiet time, forgive them and let them know that I understand that their response is actually more about them than it has than it is about me. One of the other things you can do is you can celebrate the small wins. This is really, really important and super helpful.

Bill Gasiamis 21:56
By celebrating the small wins, what you are doing is you are reminding yourself that you are moving forward, and by looking for small things to celebrate, they are going to be much easier for you to find, because stroke recovery is not linear. You are going to have days that are good, days that are bad. You’re going to have up days and down days your stroke, sometimes will feel like you’re taking one step forward and two steps back. So celebrating the small wins is really important. Those little, small wins accumulate, and they become a lot of wins over a long period of time.

Bill Gasiamis 22:34
And you should focus on long term, the long term win, where you’ve come in three months, six months, 12 months, not what happened day to day. It’s too short of a time to pay attention to how your recovery is going, because you might be paying attention on a day when things were were not so good, where you weren’t feeling great, and you felt like recovery wasn’t going forward, and there’s no point on focusing on those days. Finally, I just want to say that growth is messy and worth it. You don’t have to go back to the person you were before the traumatic event.

Bill Gasiamis 23:18
In fact, I wouldn’t recommend it. That person is living a false sense of security is unaware that they need to be prepared for things that might happen in their life. They’re going around living blissfully unaware. And while that may seem like a good idea, and means that sometimes that can catch us out and being blissfully unaware gets in the way of us responding in an appropriate manner to a traumatic event. Post Traumatic Growth is about growing into somebody new. Bring the old person with you on that journey, they can help you inform the way forward.

Bill Gasiamis 24:06
And it’s important to combine the old identity with the new identity so you can grow into an enhanced version of yourself, even though you have been wounded, traumatized, injured, it doesn’t matter. It’s really important to honor your process, because everyone’s process is what gets them to the place where they can achieve amazing and wonderful things. Your process is yours. It’s unique. Allow it to unfold. Get curious about how it’s unfolding. If you like this video, please do me a favor. Leave a comment below. Let me know what you think.

Bill Gasiamis 24:55
Are you experiencing post-traumatic growth? Have you. You made some of the steps already towards post-traumatic growth. Were you unaware of whether or not you were experiencing post-traumatic growth? I’d love to hear from you. Please leave a comment below, like and share the video, see you on the next one you.

The post The Growth You Didn’t Know You Were Having – Post Traumatic Growth After Stroke appeared first on Recovery After Stroke.

For many stroke survivors, the most challenging part of recovery isn’t always physical—it’s the mental exhaustion that follows them day after day. This deep, unshakable tiredness is known as cognitive fatigue, and it affects countless people who appear “fine” on the outside but are working incredibly hard behind the scenes just to function.

One stroke survivor who knows this all too well is Doug Mitchell.

Cognitive fatigue is a kind of mental exhaustion that goes far beyond being “tired.” It affects your ability to think clearly, stay focused, solve problems, and complete everyday tasks. After a stroke, the brain works harder to reroute and compensate for damaged areas. Even simple activities like holding a conversation, reading a sentence, or planning a meal can feel like climbing a mountain.

Unlike physical fatigue, cognitive fatigue is invisible. It’s not something people can see—but you feel it deeply. And unfortunately, it’s often misunderstood by others who don’t know what it’s like to live with a brain that’s trying to heal.

Doug Mitchell lived with cognitive fatigue for two years before realizing what had happened to him. He went to the hospital thinking he might be having a heart attack, only to learn he’d had three strokes—and never knew it. The strokes were caused by a hole in his heart, and they impacted three areas of his brain, leaving him with 90% cognitive and 10% physical deficits.

Doug calls his experience an “invisible stroke” because, from the outside, he looked fine. But inside, his brain was struggling with memory, attention, task initiation, and mood regulation.

One of the hardest moments for Doug was undergoing a neuropsychological assessment. He thought he had aced the test. But the results showed he had lost his executive function—a term that includes abilities like decision-making, multitasking, and emotional regulation. These are exactly the areas impacted by cognitive fatigue.

For the first two years, Doug was in denial. He couldn’t believe he’d had a stroke. In his words:

“I’m a man. There’s no way I had a stroke. I looked fine. I felt fine.”

That changed when he participated in a stroke survivor-led writing group. During one of the sessions, he wrote a story inspired by the prompt: “How did I get here?” What came from that was a powerful metaphor that he now shares with others:

Imagine yourself before stroke as a pristine piece of paper—smooth, unblemished.

Doug shared several strategies that help him manage his energy and improve his quality of life:

Doug knows that cognitive fatigue can be isolating. He understands the denial, the grief of not returning to work, and the uncertainty of how to move forward. But his message is clear:

“Don’t be in denial. Know that you can improve. Be kind to yourself. Take the bull by the horns—because there’s no end to what you can do. Bill and I are proof of that.”

If you’re struggling with cognitive fatigue after a stroke, know this: you are not alone. Recovery doesn’t always mean returning to who you were before—it means discovering who you are now.

Doug’s journey from “invisible stroke” to Doug 2.0 shows that even when life crumples you up, you can still unfold into something new. With patience, support, and self-kindness, your story isn’t over—it’s just being rewritten.

Doug’s invisible stroke left him cognitively fatigued—but his powerful story shows that healing, support, and meaning are still possible.

Support The Recovery After Stroke Podcast Through Patreon

Highlights:

00:00 Updates and Introduction to Doug Mitchell

Transcript:

Bill Gasiamis 0:32

Bill Gasiamis 0:32

Bill Gasiamis 1:44

Doug Mitchell 2:14

Bill Gasiamis 2:16

Doug Mitchell 2:21

Doug Mitchell 3:07

Doug Mitchell 3:46

Doug Mitchell 4:34

Doug Mitchell 5:22

Bill Gasiamis 6:02

Doug Mitchell 6:03

Doug Mitchell 6:37

Doug Mitchell 6:47

Doug Mitchell 7:36

Doug Mitchell 8:16

Doug Mitchell 9:17

Doug Mitchell 9:57

Doug Mitchell 10:36

Bill Gasiamis 10:57

Doug Mitchell 12:13

Bill Gasiamis 12:44

Doug Mitchell 12:46

Bill Gasiamis 13:07

Bill Gasiamis 13:49

Doug Mitchell 14:36

Doug Mitchell 15:20

Doug Mitchell 15:45

Bill Gasiamis 16:12

Doug Mitchell 16:18

Bill Gasiamis 16:28

Bill Gasiamis 17:06

Doug Mitchell 17:21

Bill Gasiamis 17:47

Doug Mitchell 17:50

Bill Gasiamis 17:53

Bill Gasiamis 18:32

Bill Gasiamis 18:49

Doug Mitchell 19:15

Doug Mitchell 19:40

Bill Gasiamis 19:57

Doug Mitchell 19:59

Bill Gasiamis 20:07

Doug Mitchell 20:26

Doug Mitchell 21:02

Bill Gasiamis 21:18

Doug Mitchell 21:29

Bill Gasiamis 21:32

Doug Mitchell 21:59

Bill Gasiamis 22:19

Doug Mitchell 22:24

Bill Gasiamis 22:58

Doug Mitchell 23:14

Bill Gasiamis 23:34

Doug Mitchell 23:36

Bill Gasiamis 23:44

Doug Mitchell 23:47

Doug Mitchell 24:27

Bill Gasiamis 24:50

Bill Gasiamis 25:28

Doug Mitchell 26:04

Bill Gasiamis 26:15

Bill Gasiamis 26:51

Bill Gasiamis 27:26

Doug Mitchell 27:54

Doug Mitchell 28:37

Bill Gasiamis 29:08

Doug Mitchell 29:15

Bill Gasiamis 29:19

Bill Gasiamis 29:52

Doug Mitchell 30:20

Doug Mitchell 31:09

Bill Gasiamis 31:49

Bill Gasiamis 32:26

Bill Gasiamis 33:03

Bill Gasiamis 33:40

Doug Mitchell 34:19

Doug Mitchell 35:05

Bill Gasiamis 35:19

Doug Mitchell 35:35

Doug Mitchell 36:12

Bill Gasiamis 36:39

Bill Gasiamis 37:16

Bill Gasiamis 37:55

Doug Mitchell 38:17

Bill Gasiamis 38:36

Bill Gasiamis 39:19

Doug Mitchell 39:26

Bill Gasiamis 39:27

Doug Mitchell 39:46

Bill Gasiamis 40:34

Doug Mitchell 41:25

Doug Mitchell 42:00

Doug Mitchell 42:30

Bill Gasiamis 42:44

Bill Gasiamis 43:15

Doug Mitchell 43:54

Doug Mitchell 44:27

Bill Gasiamis 44:53

Bill Gasiamis 45:27

Bill Gasiamis 46:03

Bill Gasiamis 46:39

Doug Mitchell 47:07

Doug Mitchell 47:40

Doug Mitchell 48:12

Bill Gasiamis 48:32

Doug Mitchell 48:35

Bill Gasiamis 48:42

Doug Mitchell 48:44

Bill Gasiamis 48:58

Doug Mitchell 49:05

Bill Gasiamis 49:24

Doug Mitchell 49:27

Bill Gasiamis 49:44

Doug Mitchell 49:50

Bill Gasiamis 50:15

Doug Mitchell 50:22

Bill Gasiamis 50:25

Doug Mitchell 50:29

Bill Gasiamis 50:33

Bill Gasiamis 51:10

Bill Gasiamis 51:47

Doug Mitchell 52:32

Bill Gasiamis 52:33

Doug Mitchell 53:14

Doug Mitchell 54:13

Bill Gasiamis 54:57

Doug Mitchell 55:08

Bill Gasiamis 55:14

Doug Mitchell 55:33

Bill Gasiamis 56:14

Doug Mitchell 56:31

Bill Gasiamis 57:11

Doug Mitchell 57:22

Bill Gasiamis 57:24

Bill Gasiamis 58:03

Doug Mitchell 58:45

Doug Mitchell 59:08

Bill Gasiamis 59:33

Doug Mitchell 59:40

Bill Gasiamis 59:42

Bill Gasiamis 1:00:25

Doug Mitchell 1:00:47

Doug Mitchell 1:01:19

Bill Gasiamis 1:01:50

Bill Gasiamis 1:02:27

Doug Mitchell 1:03:38

Doug Mitchell 1:04:23

Bill Gasiamis 1:05:02

Doug Mitchell 1:05:13

Bill Gasiamis 1:05:57

Bill Gasiamis 1:06:37

Doug Mitchell 1:07:05

Bill Gasiamis 1:07:07

Doug Mitchell 1:07:43

Doug Mitchell 1:08:30

Bill Gasiamis 1:09:16

Doug Mitchell 1:09:22

Bill Gasiamis 1:09:25

Bill Gasiamis 1:10:00

Bill Gasiamis 1:10:30

Bill Gasiamis 1:10:59

Intro 1:11:25

Intro 1:11:55

Intro 1:12:20

Intro 1:12:46

The post Understanding Cognitive Fatigue After Stroke: Doug’s Journey to Doug 2.0 appeared first on Recovery After Stroke.

Twelve years ago, everything changed. I was a small business owner, working long hours to keep things moving, trying to raise two teenage boys with my wife Christine, and managing all the stress that came with it. Like many people juggling life and business, I thought I had to do it all myself. I didn’t sleep enough. I smoked. I drank a little. I didn’t eat well. And I definitely didn’t ask for help.

One Friday morning in February 2012, I woke up with a numb sensation in my big left toe. It didn’t seem like a big deal, so I ignored it. Over the next few days, the numbness spread—first to my foot, then my leg, then my hip. Still, I pushed through. I had work to do, clients to manage, a team to lead. I chalked it up to a pinched nerve and visited my chiropractor.

By Friday night, I was in the emergency department. A CT scan revealed a shadow on my brain. Doctors weren’t sure what it was, but they suspected a bleed. I stayed in the hospital for seven days as they ran tests. I went home with strict orders not to work or exert myself. But I couldn’t sit still. I returned to work against medical advice and soon suffered a second brain bleed.

Six weeks later, the second hemorrhage caused increased deficits. I couldn’t think clearly, speak properly, or manage daily tasks. My cognitive fog deepened, and the world felt disorienting. I had to accept help. I had to let go of control.

In November 2014, the third bleed struck while I was driving. I felt the numbness return and drove myself to the hospital. This time, I was told surgery was necessary. My neurosurgeon, Associate Professor Kate Drummond, explained that the blood vessel had to be removed.

Amidst this crisis, my wife’s mother passed away, compounding our grief. Surgery was scheduled for November 24th—Saint Katerina’s Day in the Greek Orthodox calendar. I went in prepared, physically and emotionally.

I woke up alive but unable to walk. My left side was numb. I collapsed the first time I tried to stand. But instead of despair, I felt determined. I entered rehab, hung from a ceiling harness, and began the long journey of learning to walk again.

During rehab, I studied neuroplasticity. I learned from experts like Dr. Michael Merzenich and Dr. Paul Bach-y-Rita. I discovered that visualizing movement could activate the same neurons as actual movement. When I couldn’t move, I imagined myself walking and using my arm. This mental training became part of my daily practice.

Just before Christmas 2014, I returned home. Although my mother-in-law was no longer with us, my family was relieved to have me back. I was on my feet, using my arm again, and slowly regaining independence.

Homebound and unable to work, I asked myself a big question: What now? A conversation with a friend sparked an idea. I had learned so much—could I share it with others? I remembered a hospital room called “The Transit Lounge,” where I had waited between hospital and rehab. That became the metaphor for my first podcast.

By episode 20, I realized my true audience: stroke survivors. I rebranded the show as the Recovery After Stroke Podcast, and the rest is history.

Since then, I’ve interviewed nearly 350 stroke survivors, neuroscientists, and rehabilitation experts. At episode 70, I said something unexpected: “Stroke was the best thing that happened to me.” My guest said the same.

That moment sparked the idea for my book: The Unexpected Way That a Stroke Became the Best Thing That Happened. I identified 10 common traits shared by thriving survivors—those became the chapters.

Today, I am living proof that recovery is possible. I found a new identity, a new purpose, and a voice I didn’t know I had. This journey has taken me from rock bottom to global impact. I’ve spoken at conferences, appeared on radio and TV, and built a global community of stroke survivors who support each other.

If you’re recovering from a stroke, know this: you are not alone. Recovery takes time. It takes support. It takes a mindset. But it is possible.

Your story is still unfolding. Your purpose can still emerge. And your life can take on new meaning, just like mine did.

• Read the book: The Unexpected Way That a Stroke Became the Best Thing That Happened
• Listen to the podcast: Recovery After Stroke Podcast
• Visit the community: recoveryafterstroke.com

Let’s keep going—together.

Bill Gasiamis
Host, Recovery After Stroke Podcast

A stroke survivor’s raw and inspiring story of healing, resilience, and discovering purpose after three brain bleeds and brain surgery.

Support The Recovery After Stroke Podcast Through Patreon
Grab A Copy Of The Book

Highlights:

00:00 Life Before the Stroke
02:18 The Progression of Numbness
05:53 The Chiropractor’s Advice and Hospital Visit
16:19 The Second Bleed and Hospital Stay
24:18 Preparation for Brain Surgery
30:30 Rehabilitation and Recovery
36:07 Discovering Neuroplasticity
43:19 Starting the Recovery After Stroke Podcast
51:55 The Unexpected Way Stroke Became the Best Thing
59:37 Final Thoughts and Community Building

Transcript:

Bill Gasiamis 0:02
12 years ago, my life changed forever. So I was working in my own business, and while doing that, my wife and I were raising two young kids, one of them was teenager. One was almost about to become a teenager. I was about seven years into my business, and I had a lot to learn, and I was doing things the hard way. There were a lot of problems. There were a lot of challenges that small business owners face, getting paid, the work, the quoting, everything that anyone who’s had a small business understands.

Bill Gasiamis 0:45
But I didn’t know that I should reach out to other people to help me out, to perhaps give me a little bit of an insight into what to do to solve all those problems that new business owners tend to have. And I tried to work it out, work it all out myself. And as a result of that, I was extremely stressed out. I wasn’t enjoying my life. I was having a lot of trouble with the amount of hours that I was working with, no downtime, with just work, work, work.

Bill Gasiamis 1:18
I was totally stressed. I probably wasn’t eating well, I was smoking, I was drinking a little, and things were just pretty terrible. And then one day in the morning, I woke up and I noticed a numb sensation on my big left toe, and that was an interesting time, because I ignored it, because it’s just my big left toe. What’s the big deal? When you wake up in the morning, your entire body feels well, your bigger left toe feels numb. I still was able to walk, put my shoes on, go to work, so it didn’t really mean anything to me. It was a Friday and then when I went to work that day.

Bill Gasiamis 2:06
Everything went well as far as work was concerned, and I got stuff done. And then at the end of the day, I went home, and we went about catching up with some friends and family, which we tend to do on a Friday night, and had a few cigarettes, a few glasses of alcohol to drink. And then the next day, I noticed the numbness had spread a little to my foot. But again, I didn’t have much to do that day, so I continued to ignore it. And the following day, which was a Sunday, I woke up in the morning to go to the gym, which I used to do every Sunday.

Bill Gasiamis 2:42
And I would go for a run on a treadmill. And this particular day, while at the gym and running on the treadmill, I noticed that I couldn’t put my foot down onto the right path in the treadmill. It was becoming really difficult to it was becoming really difficult to run in a rhythm that was conducive to safe and comfortable running on a treadmill, and I had to look down a lot and notice my foot and trying to understand what was happening. Nonetheless, I pushed on and I got the run finished, and then went home. Thought nothing of it.

Bill Gasiamis 3:28
And then the next morning, on a Monday, I had decided that I was going to go and see the chiropractor about it, because when I woke up on Monday morning, the numbers had spread to my knee roughly about my knee, and I went to my chiropractor, who was on speed dial. He was always the person who I made responsible for fixing my for fixing all my ailments with regards to my back, because sometimes I would bend over incorrectly, pick up things incorrectly, and I made him responsible for fixing me, getting me back to work.

Bill Gasiamis 4:10
So when I went to the chiropractor, he had a look at it, and he said, it doesn’t look like it’s coming from your doesn’t look like it’s coming from anywhere that’s related to your back, and what you should do is just go and grab some anti inflammatories, keep an eye on it, and if it changes, get back to me and let me know. Now by this stage, I told my wife, and another two days elapsed, and by Wednesday, it had spread. The numbers had spread all the way up to my hip, basically.

Bill Gasiamis 4:51
And my wife noticed I was walking funny, and she said, Why are you walking funny? And I said. I’m not walking funny. Leave me alone. I’ve got stuff to do. I’m fine. I’ll make another appointment to see the chiropractor. So that Wednesday, I rang the chiropractor to make another appointment so he can check me out and fix me up. And then what I realized was that they were not going to be able to see me until Friday, and the first appointment was at the beginning of the day, but on that day, I was going to be in a position where I had a lot of work to do.

Bill Gasiamis 5:32
And I didn’t want to miss out on going to work. On Friday morning, I had to set up my team at one site, and then I had to meet a client at another site, so there was no way I was going to miss that. So I told the receptionist to make an appointment for me that was going to be at the end of the day on Friday, so I could finish my day’s work and then go to the appointment. And see the chiropractor, which all seemed like a good idea at the time, except Friday morning, things had escalated, and when I tried to show the guys what to do on a particular building that we were working on.

Bill Gasiamis 6:21
I had to get up on the ladder, and my left leg wouldn’t go up on the ladder. It wouldn’t stay on the bottom rung for me to climb the ladder properly. And because it wouldn’t stay on the bottom rung, I looked down to see what was happening. And what I thought was happening was that, because there was some water on the ground, I’d stepped on the water, that made my shoe slippery, and then as I tried to climb the ladder, my shoe slipped off. Well, we know now that that wasn’t the case, but at the moment, what I did was I grabbed my leg from both my knees.

Bill Gasiamis 7:05
I beg your pardon, grab my leg with both my hands from my knee, and I began to lift my foot onto the first rung of the ladder. I know what you’re saying. Now. There should have been so many warning signs I should have done something about it, but it just didn’t cross my mind that I needed to do anything more and climb on the ladder and show the guys what I was up to. So anyway, I did that. Got down, pretty non event. You know, nothing really happened. And we went to the client and saw my other client at the other site. We had the conversation. Everything went well.

Bill Gasiamis 7:50
The day finished, and then by the time the day finished, it was time for me to go to the chiropractor. I got there, and as soon as I got there, put me on the table, and he asked me what the issue was, what was happening. And I said to him that I have numbness now down my entire side, my entire left side, and that I’m not sure what it’s about, and that he needs to sort it out for me. He put me on the table, and within a minute he said, whatever’s happening is not happening to to you because of your back. It’s something else.

Bill Gasiamis 8:26
And I think he knew what it was, but he didn’t want to alarm me, so he said I would go to the hospital. Now, when he said that, I argued with him. I said, Look, I can’t go to the hospital. I’ve got work. To do tomorrow. There’s 20 guys relying on me. I think it’s 20. There was heaps of them. I don’t think it was 20, but it may have been less. The story has changed somewhat in my memory.

Bill Gasiamis 8:56
So there was, we’ll call them, 15 guys relying on me, and that day, we had to get into this building first thing in the morning, begin the job, finish the job by the end of the day, because we had no window of opportunity to do it otherwise, and that’s what I was going to do. I was not going to miss out on work. So instead of going to the hospital like he told me to I went home. And then when I got home, my wife asked me, What did the doctor say? And I told her that he told me to go to the hospital.

Bill Gasiamis 9:37
And she said, Well, what? Why are you at home? Then? Well, I told her, Look, I’ve got to go to work. There’s potentially 15 guys relying on me to get there. It was definitely more than 10, and I can’t miss out on that particular pay day. There’s a heap of work that needs to do. It’s a great opportunity. We’re going to get it done, and we’re not going to miss it. And I can’t go because. If I go to the hospital today, you know what’s going to happen? They will see me. By the time they see me and discharge me, it’ll be the next day.

Bill Gasiamis 10:11
I’ll be really tired, and then I won’t have had the opportunity to go to work. And that can’t be my wife, being a little smarter than me, said, why don’t we do this? Why don’t I take you to the hospital and they’ll tell you there’s nothing wrong, and then you can go to work tomorrow. Now, when she said, it sounded great, and I thought that was a great idea, so it’s exactly what we did. And when we got to the hospital, she left me behind, because I told her to go mind the kids.

Bill Gasiamis 10:48
They were at home alone, and it was around dinner time, and I would update her as soon as there was some information. And then from there, what would happen was I would get the scans, they would give me the details, and then I would go update her over the phone to tell her to come and pick me up. Now what happened was, as soon as I went into emergency and gave them the details of what was happening to me, well then they gave me the red carpet treatment.

Bill Gasiamis 11:22
I was in a ward immediately, and then very quickly, I was getting scans, a CT scan, blood pressure checks, the whole lot, but it did take a little while for the doctors to turn up and actually give me the news, and it was really late. We think it was around 11:30pm on the Friday night, and when I received the call and when I received the news, I sent a message to my wife and told her not to wait up for me. They haven’t got back to me. I basically lied. They haven’t got back to me with any news yet, and come and see me tomorrow morning.

Bill Gasiamis 12:12
And the reason I said that was because the doctor had come to see me and told me that there was a shadow on my brain, and that the shadow was something that they weren’t sure what it was. They didn’t know the cause of it, and they wanted to do further tests to find out what it was. So that was a seven day stay in hospital, where they continue to do all the tests that they could possibly do to determine what the cause of the bleed was. And at the end of seven days, I went home with no definitive answer, but I was told when you go home, you are not going to work.

Bill Gasiamis 13:00
Do any physical activity, nothing strenuous whatsoever, and then you’re going to come and see us in six weeks so we can do a follow up scan and work out what’s going on. So it’s exactly what I did for the majority of the time, until just before the six week appointment, I was bored at home. After being at home just dealing with all the dramas that we had just been through and not being allowed to do anything strenuous, and not being able to walk to work, anywhere, or do anything, I was going stir crazy.

Bill Gasiamis 13:38
So I decided that what I’m going to do is ring the guys to take me to work. They were going to pick me up so I don’t drive, because I wasn’t allowed to drive, and they were going to take me to work, and I was going to go and hang out with them for a day while they worked. I was going to watch them work, not fun for the employees, but nonetheless, I wasn’t going to be critical. I was just going to go and be there, because they were managing really well. Without me for six weeks, they were doing a great job, and I needed to get out of the house.

Bill Gasiamis 14:11
So somebody did come and pick me up, and they took me to work. And they were painting this massive wall. It was the wall of a hotel. They needed to use the room very quickly, this particular client of ours gave us short notice, and then when they gave us the work, we would go in, get it done within a day, and then go home and hand it back over to them. And then this particular day, the guys were doing well, getting the work done, and I was sitting on a chair just watching them and chatting to them.

Bill Gasiamis 14:43
And I noticed the room started to spin again, and I felt like I needed to throw up, and I couldn’t orient myself. And I was on the chair that I was sitting on. I was starting to lean in one direction. I was starting to kind of like i. Just fall away. And I couldn’t write myself. In order to write myself, I started to slap my face a couple of times, which didn’t really work, but the guys hadn’t finished the job yet, so I didn’t want to rush them, and I did say to them, I’m not feeling well, hopefully you’ll finish pretty soon, and then you’ll be able to take me home.

Bill Gasiamis 15:23
And I waited for them to finish the wall, which seemed to be the most important thing to me, and that’s exactly what they did. They finished the wall, and it took about another hour or so after I started feeling strange, for them to finally pack everything up and have me in the car. And then the idea in my mind was we’re going to drive home, and when I get home, I’m going to tell Christine, my wife, to take me to the hospital. And it was a great idea. On the way home, we passed by one hospital. Nearby, there was another hospital.

Bill Gasiamis 16:03
It didn’t occur to me that we should stop at the hospital. We passed by, but I did stop outside that hospital to throw up on a tree, which was in the park across the road. So instead of going into the hospital, I jumped back into the van and told the person who was driving me home to continue taking me home. So that’s what they did. Now, for some reason, it was extremely busy that day, and it took forever for us to get home, and I think we were in the car for about another hour, hour and a half, something like that.

Bill Gasiamis 16:40
And by the time we got back home, way too many hours had elapsed after I’d started feeling the room spinning, nauseous and not being able to orient myself. Christine was warned. I called her and told her be ready to take me to the hospital. So she got me and was ready to take me to the hospital. And then when we got to the hospital, which from my house, again, is about another 15 minute drive, she dropped me off an emergency we were chatting in the car. Everything was fine, and when I got to emergency and she left to go and park the car.

Bill Gasiamis 17:26
She was just going to come back quickly and meet me in the waiting room, I remember going to the nurses station to check myself in and to let them know what was happening. And I got to the window, and that’s about all I remember. I don’t remember anything else after that. I didn’t remember my name. I couldn’t tell them what I was doing there, and that’s the last thing I remember. Then I blacked out, and I think I got my wallet out and potentially gave them my ID so that they could identify me, and so they they knew who I was.

Bill Gasiamis 18:06
And then I don’t know how much longer later I woke up in a bed with all the machines connected and all the monitors running and everything. And at that time, there was this strange lady waiting for me at the end of the bed, when I wake up, she asked me, Do you know who I am? And I didn’t know who it was. I bet you guys know who it was. And she’s never, never let me forget it that I forgot who she was. I didn’t remember her or recognize her. It was my wife, Christine. When she told the doctors that I couldn’t recognize her, that was it.

Bill Gasiamis 18:47
They went mental again, and the bed that I was in was being moved at a rapid rate of knots to get me into some area where they were going to further assist me and saved my life, I imagine, and that’s exactly what they did. That was a three day hospital stay. And when I went home, I went home with a whole bunch of deficits. I couldn’t remember how to begin and finish a sentence. I couldn’t write an email. Had a lot of cognitive issues. I had a lot of trouble just doing the daily tasks that I needed to do.

Bill Gasiamis 19:40
And I felt spaced out a lot like I was some some kind of other plane, some kind of other planet. And it was the weirdest time of my life. They’d given me some medication so there was no numbness, but there was a lot of strange sensations for. Things I couldn’t make sense of, a lot of forgetfulness and anger, personality changes the whole lot. There was so many issues that I had to live with and deal with, and so did my wife. And I did my best to manage that, but I didn’t have a lot of success.

Bill Gasiamis 20:20
What had happened was the blood vessel that they finally discovered had that had bled in my brain the first time, had bled again, and this time the size of the bleed went from being about the size of a in Australia, what we call a 10 cent piece, which is probably the size of a dime, to about the size of a golf ball. And because of the position that it was in, they weren’t going to operate and remove it. They just left it in there. And because it was impacting a lot of area, what that did was it created the situation where it was impacting a lot of my brain negatively.

Bill Gasiamis 21:08
So that whole journey started to get better. After the blood clot started to decrease in size, and things started to come back online. And as they came back online, I started to get more and more active. Now, the first bleed was in February 2012 the second one was in March 2012 and after doing really well from March 2012 to about November 2014 the blood vessel burst again, and that meant that I needed another state hospital. But let me tell you the story of what happened when it burst.

Bill Gasiamis 21:57
When it burst, I was driving my car in the city, I was going to see a client, and I felt a burning sensation down my entire left side. And I thought, Oh, that’s a bit weird. So I parked the car, I got out the car, I walked around the car to see if I could shake it off, and it went away. And then I got back in the car. And then as soon as I got in the car, I realized that the numbness was back, the burning sensation, and the numbness was back. It was like I had been in the sun, and half of my body, right down the middle, got burned by the sun, and the other half did not. And it was a very bizarre feeling.

Bill Gasiamis 22:44
Now, yes, I did realize that I was probably having another bleed. So I did what everyone would do when their blade is brain is bleeding. I drove myself to the hospital in the city this time, and when I got there, I parked my car in a no standing zone, straight outside the hospital, walked to emergency, rang Christine and told her, I’m on my way. And then when I got to emergency, I went to the nurses and said to them, I am having a bleed in the brain. You need to get me into a CT scanner right now. Now they knew that that was a bit strange.

Bill Gasiamis 23:34
Nobody who’s having a stroke normally walks in to say they’re having a stroke and that they need a CT scanner. They asked me for my details. I wouldn’t give them my details because I was saying there’s no time for that. Get me into a CT scanner. And eventually I gave them my details, because that had been the hospital that I had moved all my records to after the second bleed, they found my details and confirmed that I wasn’t a crazy man, and they admitted me into hospital, where a little while later, I was met by my neurosurgeon.

Bill Gasiamis 24:15
My neurosurgeon was the one and only back then, Associate Professor Kate Drummond, now she runs neurosurgery at the Royal Melbourne Hospital in Melbourne, and she is considered to be one of the best neurosurgeons in Australia. In my mind, she’s the best. Kate came to see me and said, the blood vessel has burst again. It is bleeding now, and what we need to do is take it out. It has got to the point where this thing is not going to stop bleeding.

Bill Gasiamis 24:51
And what you need to do is make a decision as to whether or not you want to take that risk, or whether you want to prepare for brain surgery. Do, and that’s exactly what I did. I told her, we are going to prepare for brain surgery. We’re going to get this thing out, and we’re going to somehow or another, whatever comes after that. We’re going to deal with it and move on. So that was early November 2014 and then a little while later, we went and did all the paperwork, all the pre checks, etc, for surgery.

Bill Gasiamis 25:31
And in that time, just about two weeks before surgery, was booked in, my mother in law passed away, and things got really dramatic and intense, and then we got scared, and we didn’t know what the future holds. So then we have to deal with a funeral, and all of the emotions that go along with my mother in law passing away, not to mention all the emotions associated with the fact that my blood vessel in my head is bleeding. And I’m not sure how you prepare for that kind of thing, especially when you’ve been through nothing that dramatic before, and my wife was beside herself.

Bill Gasiamis 26:25
It was a very difficult time for us, the entire family, and at the funeral, I wasn’t allowed to be a pallbearer, for obvious reasons, so we attended the funeral, we did all The things that we needed to do, and then we had about a week to prepare for brain surgery, and it was such a difficult time, and that’s what we did, though we prepared. And after we prepared, we attended the hospital where I met with my surgeon again and her team. It was first thing in the morning on the 24th of November, and it was a significant day, because in Greek Orthodox tradition.

Bill Gasiamis 27:16
That’s the name day of st Catarina. And some people had mentioned that to me, they told me that everything will go well because they’re going to pray to st Catarina for me so that she can look over me during surgery and give strength to the team and to me to make sure that we have a great outcome. And first thing in the morning on the 24th of November, went into brain surgery, woke up some hours later, and was quite relieved that I woke up and things seemed to be okay, until I noticed that my left side was numb and it felt a little bit strange.

Bill Gasiamis 28:01
But I didn’t know how serious it wasn’t or what it meant, until my family came to visit. They all came to visit me. We had a little bit of a chat at the bedside in recovery. I don’t really remember seeing them. I just remember hearing them. I was quite out of it, as you can imagine. But in that time, a nurse came in as well, and the nurse asked me if I had been to the toilet yet it’s one of the things that they want to do is make sure that every patient gets to the toilet and starts moving their bowels as soon as possible after surgery.

Bill Gasiamis 28:41
And I said I had not, and she said she would help me in the to get to the toilet. And all I had to do was step off the bed on the left side, and she was going, and I was going to put my arm around her, and she was going to help me get to the toilet, because she knew I was a little groggy from surgery, and she wanted to make sure that I didn’t have a fall. Now, what she and I didn’t know was that the numbness on my left side meant that I couldn’t feel my leg, and I actually couldn’t walk, and as I got out of the bed and put my weight on the left leg.

Bill Gasiamis 29:21
I collapsed from the bed onto the ground just hours after brain surgery with a fresh scar on my head, and I screamed my lungs out. And then you can imagine what happened after that. Then there was a massive rush to get me off the ground back onto the bed, and they quickly determined that I cannot feel my left side, and they started doing more tests to try and work out what extent of numbness I had, what that meant, and how bad was the situation. Could I, Couldn’t I walk?

Bill Gasiamis 30:01
When they determined that I couldn’t walk, it was a little while later that Kate come in and arranged to have me booked in to two months of surgery, to two months of rehab so that I could learn how to walk again and regain the use of my left side. So I was alive, but I was fairly injured. My wife was definitely relieved, but then was a lot of concern about what the future had in store for us. I remember while I was still in hospital, and they wanted to get rehabilitation started.

Bill Gasiamis 30:46
They sent a rehab team into the ward, wheeled me out in a wheelchair and took me to a room and hung me up from the ceiling in a harness to help get my walking starting again. It was so strange. Anyway, I’m hanging from the ceiling. Basically, what they’re doing is they’re putting weight on my leg with my body, but just enough so that obviously I can’t fall, and that I’m completely safe. And then they’re using their hands to move my leg for me at the beginning so that I can kind of get the movement back the way that the leg moves, the mechanical part of the movement back.

Bill Gasiamis 31:32
And that’s exactly what we did for a little while. And then that had me in hospital for about another seven days. Then they moved me to the rehab ward of the hospital, the rehab section, and I was in the rehab section for the next month. I got out a little earlier than I expected, which was really big deal for me, because it was just a few days before Christmas of 2024 and I didn’t want to be in hospital over Christmas, so I was really pleased to be able to get out and go home for Christmas.

Bill Gasiamis 32:06
Now, in rehab, things started slowly. They assessed me, and then I had to go and do small amounts of rehabilitation on a daily basis because the fatigue was killing me. We’re talking about doing half an hour of recovery exercises and Neuroplasticity training of my arm and my leg, and then I’d be wiped out for that entire rest of the day as I was in hospital, the longer I was in there, the more rehab I could do without being so fatigued, but I don’t think I ever did into rehab where the fatigue didn’t kick in and then wiped me out.

Bill Gasiamis 32:48
So because of the level of fatigue at the beginning, the sessions weren’t so frequent, but then later, the sessions started to increase, and I started doing two sessions a day. I learned how to use my left side again. I learned how to use my left leg again. I learned how to use my arm. One of the exercises I did for my arm was to have my arm in a box of rice where the task was to reach in and grab all the little duvallies and knickknacks that they had in there. There were some pen lids, there was some there was some paper clips, there were some ball bearings, there was some marbles.

Bill Gasiamis 33:32
There was whole bunch of different things that I had to find, identify them before I pulled my hand out, and then put them on the table and then go again. With regards to the walking, I remember getting to a stage where I wanted to try walking on my own without anyone coming with me. So what I did was I asked the nurse who would pick me up every morning, instead of coming with me and helping me walk back, I felt I was strong enough to walk on my own. I said to her, Can I walk to the rehab room, which would have been about maybe 100 meters away?

Bill Gasiamis 34:15
Can I walk to the rehab room on my own tomorrow? And if that’s okay, that’s what I want to do, because I had the confidence now and I felt like it was the right time for me to try my own reluctantly, she said yes, but I’m sure she would have got it authorized and ticked. And I remember that day walking back to the rehab room where we were going to do some training, off on my own, off my own steam, holding on to the rail the whole way, obviously, because I didn’t want to fall over. But nonetheless, without anybody else next to me was a big deal as a big milestone moment.

Bill Gasiamis 35:00
Yeah, it was a pretty cool time to realize that you’re back on your feet. Now, my left side didn’t feel fantastic, but I was back on my feet. My knee would buckle every so often, and it still does very rarely, but sometimes it still buckles. And I got myself home in a few days, just before Christmas in December 2012 and it was a bittersweet moment, because I was home, but my mother in law wasn’t there, and we couldn’t celebrate Christmas like we had the previous years, because there was somebody missing, and we still marked the occasion.

Bill Gasiamis 35:47
But it was different. It wasn’t the same as the years before. There was a lot of happiness to have me around, and a lot of sadness because my mother in law wasn’t around, and I think it would have been so much sadder if I wasn’t there for my family, but we worked it out I got there. I now this is really important, something I want to share. So one of the reasons I believe that I got out of hospital a month earlier was because I had prepared myself a hospital, and I had done a lot of research into Neuroplasticity and how that works.

Bill Gasiamis 36:28
And whether or not I could use that in my favor in case I needed to. And what I discovered was the work of Dr Michael Merz and the kids, the doctor who I interviewed in the podcast. I can’t remember which episode, but I will put details on this video so you can find it. And he’s considered one of the world’s first authorities in Neuroplasticity, because of the work that he did in the 90s to prove that the brain was not fixed, that it was malleable plastic, and that could be retrained in different ways. And his team was part of the first team that invented the world’s first cochlear implant.

Bill Gasiamis 37:11
The bionic ear, that restored hearing to people who had lost their hearing. I bumped into Michael one time at a Melbourne event, and I asked him if he would be on the podcast, and he agreed, and what I learned from him was that I could do some things to help me in my recovery that didn’t take any Time or any effort, especially when I am sitting down because I am so fatigued all the time because of my brain injury. And this was a game changer.

Bill Gasiamis 37:50
And that thing that I learned was that if you imagine yourself doing something that activates the same part of the brain as if you’re actually doing it. So when I couldn’t do anything in my bed at rehab, I was imagining myself using my left arm and walking again, and I was doing that for hours upon hours every day, so that when I got to rehab, not only had I done the physical part of it, of rewiring the brain, I had also done the software upgrade of rewiring the brain, if you like.Yeah, that makes sense.

Bill Gasiamis 38:40
The software upgrade, and if you just imagine yourself doing something that’s rewiring that part of the brain, and when you do that task, it fires off the same neurons that you were firing off when you were imagining it. So what that means is that you can do way more rehab than you’re doing just by imagining something. So that’s one of the things that I believe to help me get out of, get out of hospital or rehab a month early.

Bill Gasiamis 39:19
Now, one of the other people whose work I looked at was a guy called Paul Bucha reader, and Paul Bucha reader was the scientist who kind of discovered Neuroplasticity, the way that we talk about it today, kind of discovered it back in the day when his Father, I believe, had a stroke, and he and his brothers decided to rehabilitate their father based on some research that they had read from many, many years ago, way back in the 1940s I believe, or even before that, and they decided to help rehabilitate their father.

Bill Gasiamis 40:00
Rather than just let him sit in a state after the hospital after his brain injury that most patients would have sat in when they were going through stroke recovery, back in those days, they did not give into the narrative, which was that, take your father home, there’s nothing you can do for him. You need to just look after him and that be about it. So they rehabilitated their father quite successfully. And then they started looking into the research about Neuroplasticity. And what they did is they devised some tools that helped blind people see again.

Bill Gasiamis 40:58
They also devised a tool that would eventually lead to restoring the balance in a lady called Cheryl Schultz, using her tongue as the balance mechanism that replaced the inner ear of Cheryl, which was damaged due to a medical situation where they gave her some medication, and that medication damaged her inner ear, and she could not Stand up on her feet after that particular intervention, the medication damaged her inner ear so much that she was not able to restore her balance. She was always in a state of vertigo.

Bill Gasiamis 41:52
The Room The world was always spinning, and she could not participate in regular life until she came across Paul Bucha reader and his team, and with a probe, with this thing that they put on the tongue, they taught the tongue to take over the task of the inner ear and restore balance to Cheryl Schultz. Now I’m going to have the details of that episode, because I interviewed Cheryl Schultz to get a first hand account of what happened to her. And I can’t believe that these are the things that I had stumbled across to help me in my recovery. And that’s what I did. I implemented them.

Bill Gasiamis 42:38
Now there are a couple of things that I should say and that depending on the severity of the damage, that might not be possible for all people. However, I don’t want to be the person who tells you something’s not possible. I would rather you work that out on your own than me tell you it’s not possible. I’m just sharing my story and the story of some other people that helped me in my journey to get from being in a wheelchair and not being able to walk and relying on other people to drive me around and pick me up and get my things done to walking to walking.

Bill Gasiamis 43:19
So that’s why I’m sharing this. I’m sharing this for that reason, and also to update people on who I am and how I came to be in the situation that I’m in, and why I’m the host of the recovery after stroke podcast, and why I wrote the book. The unexpected way that a stroke became the best thing that happened. I mean, stroke wasn’t the best thing that happened, but it’s the thing that I learned the most from.

Bill Gasiamis 43:51
It’s the experience in my life that taught me the most and that galvanized me to find information, to help myself, to seek out other people, to make sure that I was going to be able to have some sort of a regular life after all of this stuff that I was going to go through. So I hope you’ll continue listening, because I want to share some of the rest of the story. Now check out this little Wildlife Reserve at the park I’m walking in not far from where I live. So man made lake, but it’s amazing. This used to be a tip, what we call a tip, a garbage dump.

Bill Gasiamis 44:43
For many, many years, there was a hole in the ground that was so deep because it used to be a site where they would make bricks, so they had good clay here, so they would dig out the clay. They made a massive, massive hole. And. Over, I don’t know how many years, how many decades, and then after that, they refilled it, and this is where we would come to dispose of rubbish. Over the years, all sorts of different rubbish would get disposed here. And then after the decades of filling it up, then they’ve turned it into a park for the community, and it is quite massive.

Bill Gasiamis 45:23
That’s where I’ve been walking today in the park where all of the rubbish has been laid. Okay, let’s see if I can go find a shadier spot. So when I got home in 2014 we had Christmas. It was a very chilled time for New Years. We got through New Year’s 2015 and then soon after, my wife started to return back to work, because she had taken a lot of time off work, and I found myself at home alone. And while I was at home alone, I was trying to work out what I’m going to do with myself, like, what was the point of going through all this stuff? I wasn’t working yet.

Bill Gasiamis 46:10
Didn’t have the ability to go back to work. I still wasn’t allowed to drive. I was still going to regular follow ups with my surgeon to check my condition, scan the brain, see where it’s all at. And I remember being at home one day and falling over because I got up to take a plate that I had used to hold my sandwich, to take it back to the sink, and as I took the plate back to the sink and took the first step on my left leg, my left leg collapsed, and I found myself on the ground. Before I fell on the ground, I hit my chest on the couch, on the on the end of the couch, and I bruised my ribs a little.

Bill Gasiamis 47:04
The plate fell on the ground. I smashed the plate. And it was quite a fun time, as you can imagine. And I had a few more falls after that. Anyway, I digress. So then I was catching up. Had a lot of downtime. A lot of my friends would come to visit me. I was catching up with them during different parts of the day, and while they visited me, one of my closest friends, an amazing guy, the guy who wrote the forward of my book, Michael, asked me that question, you know, what are you going to do with all this information that you’ve learned about your recovery.

Bill Gasiamis 47:45
And how are you going to put information out there? Had this big desire to share what I had learned to make a life a little easier for other people, so that they wouldn’t have to go through the kind of recovery or the kind of dramas that I went through, and so that they could also reach out to me if they needed, and I could reach out to them, and we could create a community. Because in 2014 even though I had met a lot of stroke survivors, there wasn’t a massive community in the area that I lived. And I needed to find people who were like me.

Bill Gasiamis 48:23
And he sort of suggested, how would you do that? And I told him, I could do coaching. I could support people in my local community. And he he smiled and threw out at me this idea. And he said, like, you know, there’s this thing called the internet, and if you have something to share and you reach 10 people in your local area, maybe you can reach 10 times that on the internet. And it was a little daunting. I didn’t know exactly what to do about that. I didn’t know if I was ready to put out so much information about myself online in that kind of way.

Bill Gasiamis 49:06
But in around 2015 I decided that what I was going to do was put out some episodes of some podcasts that I was going to record, and it was for the first iteration of my podcast, and that first iteration came from an idea that I had, believe it or not, when I was going from hospital to rehab and they were wheeling me out in a bed to an area where I was going to wait for transportation, and that area where I was going to wait for transportation had a sign at the door as I entered. It was just a waiting room, but it said the transit lounge.

Bill Gasiamis 49:49
And I don’t know why, but that that title of that particular room stayed in my head, and I created a little metaphor about it, like. It’s the transit lounge where you go from where you are in hospital, where you can’t walk and things are a little bit difficult to where you want to be in an area where you’re going to learn how to walk and get back on your feet again. And that was the first name of the podcast, the recover, the transit lounge podcast, and the tagline was helping you go from where you are to where you’d rather be.

Bill Gasiamis 50:27
But I didn’t know yet that my audience was meant to be stroke survivors, so I started interviewing people from all walks of life who had recovered from any kind of serious situation, and I was just sharing inspirational stories, just to see whether or not I could begin a conversation, meet people, learn from them, maybe they can learn from me. And at around about episode 20, I had the aha moment that my audience and my podcast should be called the recovery after stroke podcast, and my audience should be stroke survivors, because I have way more in common with stroke survivors.

Bill Gasiamis 51:10
They are the people that I’m looking for, after all, and that’s what I did. I renamed the podcast the recovery after stroke podcast, and that’s when the podcast really took off. I started interviewing stroke survivors exclusively, and people started to notice, and they started to tune in, and I started to get a lot of good feedback, which is not why I started, but it was very useful to get it. And I met some fascinating people who I interviewed, and they were just so amazing. I learned so much from them, all different types of stroke from all over the world.

Bill Gasiamis 52:00
And it was at around episode 70 when I said one of the strangest things I’ve ever said in my life. And I referred to that earlier. It’s the title of my book, I said to the other guest, I think that strokes the best thing that happened to me. And what was even weirder than that is that she said that back to me, and then it’s like, okay, why? Why is this the case? Why is there another person on the planet saying the stroke was the best thing that happened to them? I think that I’m the only weird one that would come up with such a phrase, and that got me curious.

Bill Gasiamis 52:40
And again, it’s something that I just sat with for a little while, and I did nothing about until I went to a course with one of my mentors, who was doing a course to teach people how to model excellence, for example, or how to model the behavior of somebody else that you want To teach to someone to another group of people. It’s modeling is something that helps you shorten the time to getting a result, similar to how using imagination helps you create Neuroplasticity, just as actually doing the task that you want to achieve creates Neuroplasticity.

Bill Gasiamis 53:25
While modeling helps you model how one person does something so that you can decrease the amount of time it takes to get to the same outcome. And in the modeling course that I was doing, I learned that I might be able to, in fact, model how. Stroke is the best thing that happened. How do people get to be able to say that I didn’t know how it was that I got there. All I knew is that I was there and I needed to unpack how.

Bill Gasiamis 54:01
And then what I did was I put out a post on Instagram to ask people if they were willing to share with me how they got to the stage in their life where they were able to say that stroke was the best thing that happened to them? Well, firstly, I wanted to know if, in fact, there were people that thought that. And to my surprise, there were heaps, and they reached out, and then I reached out to them, and I interviewed them, and they helped me unpack. How does somebody get to be able to say that stroke was the best thing that happened to them.

Bill Gasiamis 54:41
And what we discovered was we had these 10 things in common, which became the chapters of my book. And then before you know it, I’m in the process of being in lockdown in Melbourne during COVID In 2020 we had the longest lockdown in the. World, we were locked down for the best part of two years, and we didn’t come out of lockdown till the end of 2022.

Bill Gasiamis 55:11
So I thought, I’m going to put all this information that I learned at this course about modeling, all the information, the commonalities that I discovered in people about how they got to be able to say that stroke was the best thing that happened to them. I’m going to pull all of that into a book, and I’m going to call my book The unexpected way that stroke became the best thing that happened. And it’s ridiculous that I, of all people would, a, have a podcast. B, have a book and C, recording a vlog about the whole situation.

Bill Gasiamis 55:51
Not that recording a vlog is the actual C, but you know where I’m going with that. Basically, this is just unbelievable, that I’m in the situation that I am in, that I’ve achieved the things that I have meant, I really can’t explain what it means to be, to be in a position where I get to speak to almost 350 stroke survivors from around The World on my podcast, including medical professionals, rehabilitation professionals, all sorts of people from all around the world. I have presented and done public speaking on the topic.

Bill Gasiamis 56:32
I’ve been on the radio because of it. I’ve been on TV because of it. And it’s just not who I was before stroke. I wasn’t that guy. They’re not the things that I used to do. They’re not the ways that I would go about my life. So I love this journey that I’ve been on. You’ll see in my previous vlog, it’s not all roses, it’s not all amazing. I don’t feel great all day, every day, but I don’t let that get in the way of me doing the things that I need to do. I found my voice through stroke. I found an audience. I created a community, and I want to encourage you guys to become a part of that community.

Bill Gasiamis 57:18
Even if it’s just by commenting on the YouTube video, even if it’s just by hitting the like button, even if it’s just by subscribing, just see what goes on in that community. You don’t have to do it the way that I do it, but you do need to find your meaning and your purpose after a stroke and your new identity, because they’re the things that I lost, that I was missing, that I needed to find and restore. And I think that’s what I’ve done. I’ve done that really well. I’ve found a way to create purpose meaning, and to move beyond all of the terrible parts of stroke.

Bill Gasiamis 58:06
It’s cost me a lot of money to have a stroke. I haven’t earned a proper income for more than 10 years, but I’m not going to let that stop me doing this thing that I love. I found it. I’m not letting it go, and I want to record 1000 podcast episodes so that no stroke survivor has to ever find themselves in a situation like I did in 2012 where there was no information about stroke recovery. There is a story for everybody on my YouTube channel, I encourage you to go through and look at them, and if you’re still listening to this particular vlog after all that time.

Bill Gasiamis 58:51
I really want to thank you for being here and doing so, and I want To tell you that you’re not alone and the recovery is possible in some way, shape or form, and it might take years. It’s taken me 12 years after my brain surgery to get this to this point, 13, in fact, to get to this point, not after my brain surgery. It’s taken me 13 years to get to this point after my stroke. Journey started. Anyhow, that’s it for me, for now, if you want to check out my book, go to recovery after stroke.com/book, or search my name, Bill Gasiamis on Amazon.

Bill Gasiamis 59:38
And subscribe to the show on iTunes, on Spotify, leave a comment. Give me a review as well. Let me know what you think of this type of content. Every interaction helps the podcast find more stroke survivors, and it’s amazing.

Bill Gasiamis 59:57
Because today I had a stroke survivor reach out onto one of my YouTube channel videos and tell me that they are in hospital, lying in bed after they’ve just had a stroke, looking at videos on stroke recovery, and one of the first videos that came up was mine. So I really appreciate all the interactions, because that makes it easier for other people to find the content See you in the next episode.

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