Recovery After Stroke

At 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn’t remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down.

Here’s the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay.

And yet, Judy’s story isn’t about doom. It’s about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life.

Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging.

Those collateral vessels can become a risk. In Judy’s case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life.

The emotional gut punch wasn’t only the stroke itself. It was the psychological whiplash of thinking you’re safe… and discovering you’re not.

Judy didn’t just resist the hospital. She resisted the idea that this was happening at all.

She’d been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There’s nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help.

So when her husband wanted to call emergency services, her reaction wasn’t logical, it was emotional. It was the reflex of someone who’d been through too much.

Denial isn’t weakness. It’s protection. It’s your mind trying to buy time when the truth is too big to hold all at once.

In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it.

But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren’t speaking the same language.

She believed she lifted her foot, then saw it hadn’t moved for several seconds.

That’s when she finally had to admit what so many survivors eventually face:

Recovery begins the moment you stop arguing with reality.

Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be.

If you’re living through Moyamoya syndrome stroke recovery, it’s easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance.

But Judy’s most persistent challenge wasn’t always visible.

It was cognitive fatigue, the kind that makes simple tasks feel impossible.

Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes.

And then there’s the emotional layer: when you’re a perfectionist, errors feel personal.

Judy described how fatigue increases mistakes, not because she doesn’t care, but because the brain’s bandwidth runs out. That’s a brutal adjustment when your identity has always been built on competence.

A practical shift that helped her

Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It’s not glamorous, but it reduces cognitive load and protects energy.

In other words: consistency beats intensity.

Judy’s drive didn’t disappear after her stroke. If anything, it became part of the recovery engine.

She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion.

That matters for one reason: it proves recovery doesn’t have one shape.

For some people, recovery is walking again.

For others, it’s parenting again.

For others, it’s working again without losing themselves to burnout.

The goal isn’t to recreate the old life perfectly. The goal is to build a life that fits who you are now.

[Quote block mid-article]

“If you couldn’t make fun of it… it would be easier to fall into a pit of despair.”

Judy doesn’t pretend everything is okay. She’s not selling toxic positivity.

But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving.

She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous.

Laughter can’t fix Moyamoya.

But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow.

And sometimes, tomorrow is the whole win.

One of the most profound shifts Judy described was this: the stroke changed her scale.

Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her.

That’s not magical thinking. That’s a perspective earned the hard way.

Many survivors quietly report this experience: once you’ve faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn’t matter.

Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map.

Helping others doesn’t erase what happened.

But it can transform pain into purpose.

If your recovery feels messy… if you’re exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality…

You’re not broken.

You’re adapting.

And your next step doesn’t have to be dramatic. It just has to be honest and repeatable:

Recovery is not a straight line.

But it is possible to rebuild a life you actually want to live.

If you want more support and guidance, you can also explore Bill’s resources here:

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

She thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy’s comeback will change how you see recovery.

Judy’s Instagram

Highlights:

00:00 Introduction and Guest Introduction

Transcript:

The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging.

She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed.

and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast.

Judy Kim Cage (01:43)

Bill Gasiamis (01:45)

Judy Kim Cage (01:51)

Bill Gasiamis (02:04)

Judy Kim Cage (02:20)

Traveling every other week, basically so 50 % of the time, flying to Columbus, staying there, and then flying back home for the weekend and working in a rented office for the week after. And I did that for all of 2018. And then in 2019 is when my body said, hang on a second. And I had a stroke.

Bill Gasiamis (03:17)

Judy Kim Cage (03:19)

Bill Gasiamis (03:26)

Judy Kim Cage (03:26)

Bill Gasiamis (03:37)

in that time when you’re working 90 hours a week. Is there time for anything else? you get to squeeze in a run at the gym or do you get to squeeze in a cafe catch up with a friend or anything like that?

Judy Kim Cage (03:51)

⁓ yeah, I remember on one of my very first jobs, I had been so excited because I had signed up to take guitar lessons and I was not able to leave in order to get there in time. ⁓ so that took a backseat.

Bill Gasiamis (04:40)

Judy Kim Cage (04:44)

Absolutely. We started as a cohort essentially of, I want to say 40 some people all around the same age. And then, you know, as the years ticked by, we started falling off as they do in that industry.

Bill Gasiamis (05:19)

Judy Kim Cage (05:31)

And yeah, no, was, when I had put in a year, when I was in ⁓ acute therapy, ⁓ I had spoken with a number of students and they had interviewed me as a patient, but also from the psych side of it all, ⁓ asking, well, what does it feel like to all of a sudden have your life stop? And I said, well,

⁓ and things got a bit emotional, I said, I felt like I was at the top of my game. I had finally achieved the job that I absolutely wanted, had desired. ⁓ I felt like I’d found a home where I was now going to retire. And all of a sudden that seems like it was no longer a possibility.

Bill Gasiamis (06:55)

or I do well, where I succeed, where people believe in me, where I have the support and the faith or whatever it is of my employers, my team. Is that kind of how you describe on top of your game or is it something different?

Judy Kim Cage (07:41)

from undergrad to here. However, I was able to take pieces of everything that I had done and put it together into a position that was essentially kind of created for me and then launched from there. So I felt as though it was essentially having climbed all of those stairs. So I was at the top. Yeah.

you know, looking at my Lion King kingdom and yeah.

Bill Gasiamis (08:43)

Judy Kim Cage (08:49)

And I decided, I absolutely insisted that I was going to go back. The doctor said, okay, you can only work four hours a week. I said, four hours a week, what are you talking about? ⁓ But then I realized that four hours a week was actually really challenging at that time. ⁓ And then ⁓ I climbed back up. was, you know, I’m driven by deadlines and…

⁓ I was working, you know, leveraging long-term disability. And then once I had worked too many hours after five years, you know, I graduated from that program, or rather I got booted out of the program. ⁓ And then a year later, I was actually, well, no, actually at the end of the five years I was promoted. So, ⁓

after coming back full time.

Bill Gasiamis (10:20)

or you’re trying to explain a rare condition like Moyamoya and nobody really gets it. I want you to hear this clearly. You’re not failing. You’re recovering. If you want extra support between episodes, you can check out my book at recoveryafterstroke.com slash book. And if you’d like to help keep this podcast going and support my mission to reach a thousand episodes, you can support the podcast at Patreon by visiting patreon.com/recoveryafterstroke.

All right, let’s get back to Judy.

It was four in the morning and I was told I woke up screaming and I felt this horrible, horrible worst headache ever ⁓ on the right side. And I think because I have, I have Moyamoya syndrome, because of that and because I had had brain surgeries, ⁓

10 years or back in December of 2008, I had a brain surgery on each side. And that at the time was the best of care that you could get. You know, that was essentially your cure. And so I thought I was cured. And so I thought I would never have a stroke. So when it was actually happening, I was in

denial said there’s no way this could be happening. But the excess of pain, ⁓ the nausea and ⁓ it not going away after throwing up, the numbness ⁓ and then the eventual paralysis of my left side definitely ⁓ was evidence that something was very very wrong.

Bill Gasiamis (13:09)

Judy Kim Cage (13:14)

Bill Gasiamis (13:24)

Judy Kim Cage (13:30)

Bill Gasiamis (13:38)

Judy Kim Cage (13:41)

Bill Gasiamis (13:45)

Judy Kim Cage (13:53)

Bill Gasiamis (14:11)

Judy Kim Cage (14:19)

and then say, hours and hours and hours later, there’s nothing we can do. The next course of action, if it was absolutely necessary, would be another surgery, which would have been bur holes that were drilled into my skull to relieve some sort of pressure. ⁓ In this particular case, the options were to ⁓ have a drain put in my skull.

and then for me to be reliant on a ventilator. Or they said, you can have scans done every four hours and if the damage becomes too great, then we’ll move on. Otherwise, we’ll just keep tabs on it, essentially.

Bill Gasiamis (15:37)

puts your mind at ease and everybody else around you is let’s go and get a scan and then, and then move on with life. Once they tell you it was, ⁓ it was not another bleed or whatever. Yeah. However, three times I did go and three times there was a bleed. So it’s the whole, you know, how do you wrap your head around like which one isn’t the bleed, which one is the bleed and

It’s a fricking nightmare if you ask me. And I seem to have now ⁓ transferred that concern to everybody else who has a headache. On the weekend, my son had a migraine. And I tell you what, because he was describing it as one of the worst headaches he had ever had, I just went into meltdown. I couldn’t cope. And it was like, go to the hospital, go to the hospital, go to…

He didn’t go, he’s an adult, right? Makes his own decisions. But I was worried about it for days. And it wasn’t enough that even the next few days he was feeling better because I still have interviewed people who have had a headache for four or five or six days before they went to hospital and then they found that it was a stroke. it’s just become this crazy thing that I have to live with now.

Judy Kim Cage (17:26)

Bill Gasiamis (17:35)

Judy Kim Cage (17:53)

the days of teams and zoom and that we all tested out ⁓ from COVID. ⁓ yeah, that’s.

Bill Gasiamis (18:35)

Judy Kim Cage (18:37)

my gosh. ⁓ Well, yeah, absolutely. ⁓ Massive amounts of pain ⁓ from all the blood absorbing back into the brain. ⁓ The left side, my left side was paralyzed. My arm fell out of my shoulder socket. So it was hanging down loosely. ⁓ I had dropped foot, so I had to learn to walk again.

Double vision and my facial group on the left and then. Bluff side neglect.

Bill Gasiamis (19:31)

Judy Kim Cage (19:56)

makes up essentially your entire body. And so I have hypermobility, the blood, I have pots. So my, my blood basically remains down by my feet, it pulls at my feet. And so not enough of it gets up to my brain, which also could, you know, have affected the moimoya. But

Essentially, it creates vestibular issues, these balance issues where it’s already bad enough that you have a stroke, but it’s another to be at the risk of falling all the time. Yeah. Or if you get up a little too fast, which I still do to this day, sometimes I’ll completely forget and I’ll just bounce up off the sofa to get myself a drink and I will sway and all of a sudden

Bill Gasiamis (21:07)

Judy Kim Cage (21:22)

Bill Gasiamis (21:37)

Judy Kim Cage (22:02)

So, my way is a cerebrovascular disorder where your internal carotid progressively constricts. So for no known reason, no truly known reason. And so because it keeps shrinking and shrinking, not enough brain, blood gets to your brain. So what the brain decides to do to compensate

is it will form these collateral vessels. And these collateral vessels, which there are many of them usually, you know, the longer this goes on, ⁓ they have very thin walls. So due to the combination of the thin walls, and if you have high blood pressure, these walls can break. And that is what happened in my case. ⁓

Well, the carotids will continue to occlude, but what happens is, ⁓ least with the surgery, they took my temporal artery, removed it from my scalp, had taken a plate off of my skull and stitched that.

temporal artery onto my brain so that it would have a separate source of blood flow so that it was no longer reliant on this carotid. So we know that the carotid, sorry, that the temporal artery won’t fail out. ⁓ So usually, ⁓ and this was my surgery was actually done at Boston Children’s Hospital ⁓ by the man who pioneered the surgery.

And he was basically head of neurosurgery at Harvard Medical School and Boston Children’s because they more often find this in children now. And the sooner they find it, the fewer collateral vessels will form once the surgery is performed.

Bill Gasiamis (24:17)

Judy Kim Cage (24:25)

But I was diagnosed at the age of 29. So I had quite a while of these collateral vessels forming in what they call a puff of smoke that appears on the MRI. ⁓ And that is what, you know, Moyamoya essentially means in Japanese, is translated to in Japanese, it’s puff of smoke.

Bill Gasiamis (24:50)

Judy Kim Cage (25:07)

Bill Gasiamis (25:19)

Judy Kim Cage (25:34)

one of my least favorite things to do anymore. Whereas it was very easy at one point. ⁓ And now if I want to clean up my inbox, it is just a dreaded task. ⁓ And so now I’ve learned that if I do a little bit of it every day, then I don’t have, it doesn’t have to take nearly as long. ⁓

Bill Gasiamis (26:26)

it’s dreaded about it is it making decisions about where those emails belong, what to do to them or.

Judy Kim Cage (26:33)

That might by the time I get to this tedious task, I’m not thinking about it strategically. ⁓ Yeah, I’m just dragging each individual line item into a little folder. ⁓

So, ⁓ but yeah, like the cognitive deficits. gosh. mean, I’m working on a computer all day. I am definitely a corporate desk rat or mouse, you know, on the wheel. ⁓ And a lot of Excel spreadsheets and just a lot of very small print and sometimes I get to expand it. ⁓

And it really is just trying not to, well, the job involves making as few errors as you possibly can.

Bill Gasiamis (28:01)

Judy Kim Cage (28:02)

Bill Gasiamis (28:30)

Judy Kim Cage (28:46)

Bill Gasiamis (29:00)

break this because it’s not, it’s not good. So I totally get what it’s liked to be like that. And then I have had the cognitive fatigue where emails were impossible. Spreadsheets forget about it. I never liked them anyway. And they were just absolutely forget about it. Um, I feel like they are just evil. I feel like the spreadsheets are evil, you know, all these things that you have to do in the background, forget about it. That’s unbelievable. So, um,

What was it like when you first sort of woke up from the initial stroke, got out of your unconscious state and then realized you had to deal with all of this stuff? I know for some time you were probably unable to speak and were you ⁓ trapped inside your body? Is that right or?

Judy Kim Cage (30:19)

I was paralyzed on the left side, so I was not able to get up, not really able to move much. ⁓ I was not speaking too much, definitely not within the first week. I was in the ICU for 10 days. ⁓ And yeah, I just wasn’t able to do much other than scream from the beam.

⁓ And then I, once I became more aware, I insisted that I could get up and walk to the bathroom myself. I insisted that I could just sit up, get up, do all the things that I had done before. And it being a right side stroke as well, you know, I think helps contribute to the overestimation or the…

just conceitedness, guess, and this self-confidence that I could just do anything. Yes, absolutely. And I was told time and time again, Judy, can’t walk, Judy, can’t go to the bathroom, Judy, you can’t do these things. And I was in absolute denial. And I would say, no, I can, I can get up. And meanwhile, I would say that

Bill Gasiamis (31:30)

Judy Kim Cage (31:51)

Bill Gasiamis (32:00)

Judy Kim Cage (32:20)

You know, and like you had mentioned, you know, I had lost the signals from my brain to my bladder. They were slow or whatnot. And I was wetting the bed, like a child at a sleepover. And I was pretty horrified. And that happened for, you know, pretty much my, pretty much all my time at Kratie, except I got the timing down.

⁓ eventually, which was fantastic. But then when I moved to post-acute, ⁓ then I had to learn the timing all over again, just because, you know, of different, rules being different, the transfers being different, and then, ⁓ you know, just ⁓ the timing of when somebody would answer the call button, et cetera.

Bill Gasiamis (33:45)

Do you, what was it like going to rehab? I was really excited about it. I was hanging out because I learned that I couldn’t walk when the nurse said to me, have you been to the toilet yet? And I said, no, I hadn’t been to the toilet. We’re talking hours after surgery, you know, maybe within the first eight or nine hours, something like that. And I went to put my left foot down onto the ground. She was going to help me. She was like a really petite Asian.

framed lady and I’m and I’m probably two feet taller than her, something like that, and double her weight. And then she said, just put your hand on my shoulder and then I’ll support you. So I did that. I put my hand on her shoulder, stepped onto my left foot and then just collapsed straight onto the ground and realized, ⁓ no, I’m not walking. I can’t walk anymore. And then I was then waiting.

hanging out to go to rehab was really excited about that. ⁓ What was it like for you?

Bill Gasiamis (34:56)

as in like, were you aware that you could ⁓ improve things? Were you kind of like, we’re gonna overcome this type of stuff? Because you had a lot more things to overcome than I did. So it’s like, how is that? How do you frame that in your head? Were you the kind of person who was like, ⁓ rehab’s around the corner, let’s do that? Or were you kind of reluctant?

Judy Kim Cage (35:19)

And so I was told on Tuesday that I would be there for another at least four to six weeks. And so that was even before therapies really began. So there was a part of me saying, I don’t care, let me go home and I’ll do outpatient every day and everything will be fine. At least I get to go home. But then the other part.

Bill Gasiamis (35:52)

Judy Kim Cage (36:11)

They were so caring, so understanding. They made jokes and also laughed at mine, which was even better. And when you’re not in therapy, especially on the weekends, you’re just in your room by yourself. And you’re not watching TV because that input is way too heavy. Listening to music.

maybe a little bit here and there. ⁓ You know, all the things that you know and love are nowhere to be found, you know, really. ⁓ Yeah, absolutely. Yeah, yeah. And I get claustrophobic in the MRI, in the hospital, et cetera. yeah.

Bill Gasiamis (37:14)

Yeah.

I was on YouTube, searching YouTube videos that were about neuroplasticity, retraining the brain, that kind of stuff, meditations, type of thing. That really helped me on those weekends. The family was always around, but there was delays between family visits and what have you that couldn’t be there that entire time. ⁓ So I found that very interesting. And you know, rehab was a combination of

frustration and excitement, excitement that I was getting the help, frustration that things weren’t moving as quickly as I wanted. ⁓ And I even remember the occupational therapist making us make breakfast. And I wouldn’t recommend this breakfast for stroke survivors. I think it was cereal and toast or something like that. And I remember being frustrated, why are they making me make it? My left side doesn’t work. Like I can barely walk.

I cannot carry the glass with the tea or anything like that to me. What are these people doing? They should be doing it for us. I wasn’t aware. I wasn’t aware that that was part of the therapy. I just thought they were making us make our own bloody breakfast. I thought these people are so terrible. And it took a while for me to clue on like, ⁓ okay.

Judy Kim Cage (38:44)

Bill Gasiamis (38:52)

Judy Kim Cage (39:00)

I can cook and I used to love cooking, but I don’t do it nearly as much as I used to. So that skill did not really transfer over. ⁓ I have Post-it notes up by the microwave that tell me right hand only because if I use my left hand, the temperature differential

I will burn myself ⁓ without even realizing it or even reaching for a certain part of a pan that I think is going to be safe and is somewhat heat resistant. And I touch it and then poof, well, you know, get a burn. So there are post-it notes everywhere. There’s one by the front door that says, watch the steps, because I had a couple of times flown down them and gashed my knee.

Bill Gasiamis (40:13)

Judy Kim Cage (40:26)

Bill Gasiamis (40:35)

Judy Kim Cage (40:46)

but it only fell down, I think, a couple of years ago.

Bill Gasiamis (41:18)

Judy Kim Cage (41:44)

Bill Gasiamis (42:04)

Judy Kim Cage (42:29)

Also, because not many people did that apparently. You know, most people curse them off or, you know, were kind of miserable. And there were times when I was miserable too. Absolutely. But, but I probably took it out more on my husband than I did the staff. And he, and he would call, you know, I said, I was so mean to you, Rich. was so mean to you. And he said, yeah, you were nicer to the nurses than to me. And I.

I apologized for it, but at the same time I’m like, yeah, but sometimes, bud, you are so annoying.

Bill Gasiamis (43:33)

Judy Kim Cage (43:34)

I called it my evil twin because I didn’t even recognize that it was mine. But then I would give it a high five every time I started gaining function back. And I would say things like, yeah, hey, evil twin, congrats. Or ⁓ I would say, I guess I don’t have to clean the house anymore. I don’t have to use my left hand to dust. I’m not capable of doing it. So why do it?

Bill Gasiamis (44:29)

Judy Kim Cage (44:30)

Bill Gasiamis (44:48)

you know, really dial it down just by picking something strange that happened and laughing at it. I found myself doing that as well. And I’m similar in that I would go to rehab and they would, you know, we would chit chat like I am now with you and would have all sorts of conversations about all kinds of things. And the rehab was kind of like the, the, it was like the vessel, you know, to talk shit, have a laugh. ⁓

you know, be the clown of the rehab room. And I get it, everyone’s doing it tough, but it lightened the mood for everybody. You know, was, it’s a hard thing. You know, imagine it being just constantly and forever hard. And it was like, I don’t want to be that guy and wish they have fun as well. And, and I think my, my, my tough times were decreased as a result. Like, you know, those stuff, mental and emotional days, they, they come, but they go. then

you have relief from them. And I think you need relief.

Judy Kim Cage (46:23)

Bill Gasiamis (46:39)

Judy Kim Cage (46:59)

I’m pretty confident in who I am, which is funny. ⁓ I ⁓ actually lean more into making more jokes or ⁓ lean into the fact that things don’t, they don’t have nearly the importance or the impact that you would otherwise think. ⁓ One of my sayings, I guess I say all the, you know, how they say don’t sweat the small stuff.

my big stuff, like big stuff became small stuff, you know. So it would have to be something pretty big in order for me to really, really, you know, think about it. And a lot of the little things, you know, the nuisances in life and stuff, would usually just laugh or if I tripped or something, then I would just laugh at it and just keep moving on. ⁓ And I think, you know,

It’s funny because some people will say, ⁓ gosh, like stop, you know, there is toxic positivity, right? And there’s plenty of that. And ⁓ I stay away from that, I think. But when I try to give people advice or a different outlook, ⁓ I do say, well, you you could think of it this way, you know.

It’s not all sunshine and rainbows and flowers and, you know, care bears, but it is, you know, but it, but you can pull yourself out of a situation. You can try to figure out a way to work around it. You can, you know, choose differently for yourself, you know, do things that you love. You know, you’re only given a certain amount of limited time on the earth.

So how do you want to spend it? And if you are on your deathbed, you know, would you have, do you have any regrets? You know, like you did read the books about, you know, that, ⁓ why am I forgetting? Doctors ⁓ that perform palliative care and, you know, they’ve written books about

you know what people’s regrets have been after, know, once they are about to pass and you know, that not taking action was a regret. You know, like why didn’t I do this? Or why didn’t I do this? Why didn’t I try this? Like really, what would have been the downfall to trying something? ⁓ And I find that, you know, aside from just naturally being able to see

things to laugh at or, or positive sides of things. ⁓ I tried, like, I wish that people could experience that without having gone through what we went through. ⁓ but that’s virtually impossible. I think.

Bill Gasiamis (50:18)

Sad as that is.

Judy Kim Cage (50:39)

Bill Gasiamis (51:03)

Judy Kim Cage (51:04)

Bill Gasiamis (51:29)

Your journey seems like you’re growing through this adversity, like as in it’s very post-traumatic growth type of experience here. Something that I talk about on my book, the unexpected way that a stroke became the best thing that happened. Not something that I recommend people experience to get to the other side of that, of course. But in hindsight, like it’s all those things that you’re describing.

a lot of overlap there, right? And one of the chapters that there’s overlap in is the volunteering and purpose. I’ve got parts of my book that specifically talk about doing stuff for other people and how that supports recovery and how the people who said that stroke was the best thing that happened to them, the ones that I interviewed to gather the data, one of the main things that they were doing was helping other people, volunteering in some way, shape or form. And that helped shape their purpose in life.

and their meaning in life. And it’s how I got there as well. It was like, okay, I’m gonna go and prevent stroke. I’m gonna go talk on behalf of the Stroke Foundation. We’re gonna raise awareness about what stroke is, how to take action on stroke, what to do if somebody’s having a stroke. And I started to feel like I gained a purpose in my life, which was gonna to not allow other people to go through what I went through. And then,

With that came public speaking and then with that came the podcast and then the purpose grew and it became really ⁓ all encompassing. It’s like, wow, like I know what my mission is. I didn’t seek to find it. I stumbled across it and the chapter in my book is called stumbling into purpose because you can’t think it up. You just have to take action and then bam, bam, it appears. Like, is that your experience?

Judy Kim Cage (53:53)

whether it’s because they see me as inspiring that I was able to recover so quickly or that I was able to go back to work, you know, permanently. And just to give them hope, really. And ⁓ when I was in acute, I felt as though like,

We do so much of the recovery alone ⁓ and there isn’t a ton of, you know, of course our therapists are fantastic and they’re, you know, they’re loving and they’re caring. But in terms of having to make it through, you know, certain darkness alone or, ⁓ you know, just feeling sorry for yourself even sometimes, or feeling like, hey, I can do everything, but nobody’s encouraging that.

because they think it’s dangerous. ⁓ I had wished that, you know, there were more people who could understand ⁓ what survival and then recovery was, you know, truly like. And so I had read that in a number of books before hearing people tell me their stories in person because

Emotionally, I absorbed too much of it. ⁓ I wanted to, I think I passed that five-year survival mark of the 26.7%, which I know varies for everybody. ⁓ at the same time, I said, wow, I did, I made it to the other side, I beat these odds. I think I wanted to keep it secret from all the people I worked with.

which I still have actually, it won’t be for too much longer. ⁓ But ⁓ just being able to share that and to be vulnerable and to say all the deficits that I have and what I have overcome, ⁓ I think it’s also given people some hope that they can, if she was able to do it, then maybe it isn’t as tough as I think it is.

Bill Gasiamis (56:43)

Dude, you don’t know who I am. Like if you think I’m the podcast guy, you’ve got no idea. I’m in the back of my, in my garden, in a shed. what was something that’s meant to be a shed that looks like a studio and amazing and all this kind of stuff. Like, dude, I’m just.

Judy Kim Cage (57:29)

Bill Gasiamis (57:32)

hurdle and stumble through that one and then keep going. I really want people to understand that even the people who appear to be super fabulous at everything, like they’re just not, nobody is that, everyone is just doing their best they can. Even the guy who’s got more money than you, a bigger house, whatever, a better investment, all that stuff, they’re all faking it until shit hits the fan and then they’ve got to really step up to be who they are.

You know, that’s what I find. But attitude, mindset, ⁓ approach, know, laughing, doing things for other people all help. They are really important steps, you know. The other chapter that kind of.

made me pay attention and take note ⁓ was you talk about the night everything changed, complicated medical history, lifesavers, volunteering and purpose, the caregivers, ⁓ easing back into life, which I think is a really important chapter, returning to work, which is really important. then chapter nine, life after stroke continued. That kind of really

is something that made me pay attention because that’s exactly what it is, right? It’s life after stroke. It’s like a continuation. It’s a never ending kind of ⁓ unattainable thing.

Judy Kim Cage (59:27)

you know, what I had gone through for a little while. I said, why do I still have to learn the same lessons that everybody else has to learn? You know, if I’ve gone through this kind of transcendental thing, why do I still have to learn, you know, these other things? But then I realized that I was given the opportunity ⁓

from surviving, was given another chance to be able to truly realize what it was like to be happy and to live. And I’d never, I mean, I had, I had been depressed, you know, for an anxious for years. And, you know, I’ve been in therapy for years and, ⁓ you know, it really wasn’t truly until kind of getting this push of the fast forward button

on learning lessons that it truly became happy, like true, true happiness. And I said, wow, that was the gift. And then to try to pass that on.

Bill Gasiamis (1:01:10)

Judy Kim Cage (1:01:15)

Bill Gasiamis (1:01:20)

Good days, bad days, and I even recently had a bit of a day where I said to my wife, I got diagnosed with high blood pressure, headaches, migraines, a whole bunch of stuff, and then just tomorrow, I’m I’ve had enough. Why do I need to to be diagnosed with more things? Why do I need to have more medical appointments? Enough, it’s enough. I need to stop this stuff. It’s not fun. And then it took me about half a day to get over myself and go, well, I shouldn’t be here, really. Technically,

Somebody has three blades in the brain, you know, I don’t know, maybe 50 years ago, they weren’t gonna make it. So now you’ve made it also high blood pressure. If you had high blood pressure 50 years ago, there was nothing to do to treat it. It was just gonna be high until you had a heart attack or ⁓ a brain aneurysm burst or something. And it’s like, I get to live in a time when interventions are possible and

it is a blip on the radar. Like just all you do is take this tablet and you’re fine. Not that I revert to give me the tablet solution. I don’t, I’m forever going under the underlying cause. I want to know what the underlying cause is trying to get to the bottom of all of that. But in the meantime, I can remain stable with this little tablet and ⁓ decrease the risk of another brain hemorrhage. So it’s cool, know, like whatever.

And that kind of helps me get through the, why me days, you know, cause

They’re there, they come, they turn up, especially if it’s been one day after the next where things have been really unwell and we’ve had to medical help or whatever. When it’s been kind of intense version of it, it’s like, okay, I don’t want any more of this. So I get the whole, I’ve experienced the whole spectrum in this last 13, 14 years. We’re coming up to, I think the 20th or 21st, I think is my,

maybe the 25th of my anniversary of my brain surgery. Jeez, I’ve come a long way. It’s okay. It’ll be like 11 years since my brain surgery. A lot of good things have happened since then. We got to live life for another 13 years, 11 years. I keep forgetting the number, it doesn’t matter. Yeah.

Judy Kim Cage (1:04:17)

Bill Gasiamis (1:04:33)

of years, a lot of years, great that they’ve happened and I’m really happy with that. Keep doing these podcasts, makes me forget about myself. It’s about other people, so that’s cool. know, meet people like you, putting out awesome books. And when I was going through early on, there wasn’t a lot of content. It was hard to get content on stroke surviving, recovery, all the deficits, all the problems. That’s part of the reason why I started this.

And now I think I’ve interviewed maybe 20 or 30 people who have written a book about stroke, which means that the access to information and stories is huge, right? So much of it. ⁓ Your book comes out in early December. Where is it going to be available for people to buy?

Judy Kim Cage (1:05:20)

Bill Gasiamis (1:05:39)

Judy Kim Cage (1:06:07)

around.

Bill Gasiamis (1:06:09)

If you stuck around, give us a thumbs up, right? Stuck around in the comments or something, you know? ⁓ Absolutely. Thank you so much for joining me, reaching out, sharing your story. It is lovely to hear and I wish you well in all of your endeavors, your continued recovery. yeah, fantastic. Great stuff. Thank you so much. Thank you.

Well, that’s a wrap for another episode. want to thank Judy for sharing her story so openly. The way she spoke about denial, rehab, reality, cognitive fatigue and rebuilding identity is going to help a lot of people feel less alone. If you’re watching on YouTube, let us know in the comments, what part of Moyamoya Syndrome stroke recovery has been the hardest to explain to other people for you? Was it the physical symptoms or is it the invisible ones?

like fatigue and cognition. And if you’re listening on Spotify or Apple podcasts, please leave a review. It really helps other stroke survivors find these conversations when they need them most. Judy’s book is called Super Survivor, How Denial Resistance and Persistence can lead to success and a better life after stroke. And you’ll find the links in the show notes. And if you want more support from me, you can

Grab a copy of my book at recoveryafterstroke.com/book, and you can become a Patreon supporter at patreon.com/recoveryafterstroke. It genuinely helps keep this show alive. Thanks again for being here. Remember you’re not alone in this recovery journey and I’ll see you in the next episode. 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 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical

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. 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

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The post Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis appeared first on Recovery After Stroke.

If you’ve had a stroke (or you love someone who has), you’ve probably seen the same promise pop up again and again:

“Stem cells can fix the damage.”

And when you’re tired, frustrated, and doing the hard work of rehab every day, that promise can feel like a lifeline.

But here’s the problem: hope is powerful… and hype knows it.

A viewer recently asked me a question that’s become more common over the last few years: “What can you say about the effectiveness of STC30 stem cell treatment?” And my honest first reaction was: I don’t even know what that is.

So instead of guessing, I did what I always encourage stroke survivors to do:

I checked. Carefully.

Because the last thing I want is to sound confident while accidentally sending someone into an expensive rabbit hole.

When people hear “stem cells,” it’s easy to imagine a simple story:

“New cells will replace the damaged brain cells… and I’ll be back to normal.”

But most current thinking in research is closer to this:

Stem cells may act more like helpers than replacements.

Instead of becoming brand-new brain tissue, the hope is that stem cells may release signals that support healing, things like:

So rather than “magic new brain,” the real question becomes:

Does this create better conditions for recovery?

That’s still an exciting idea. But exciting isn’t the same as proven.

When you zoom out and look at the research as a whole, the most accurate summary is this:

There are encouraging signals… and real uncertainty.

Some studies suggest stem cell approaches might help some people improve things like movement, function, or daily activities especially under certain conditions.

But here’s the fine print most people never see:

Trials vary widely in:

So when someone says, “stem cells work,” the real question is:

Which stem cells are given when, given how, and for who?

Not all trials are designed equally. Some are small. Some use different measurement scales. Some follow up for shorter periods. And that makes it hard to draw strong conclusions that apply to everyone.

Even when short-term safety looks okay in some studies, long-term tracking can be limited depending on the approach used.

So the responsible stance is not “yes” or “no.”

It’s: “Show me the details.”

This is where many survivors get stuck.

A clinic or company may use a name that sounds scientific, something like “STC30,” “protocol X,” “advanced regenerative therapy,” but the name itself doesn’t automatically tell you:

So if the name is unclear, don’t decide based on the label.

Decide based on the details.

“Promising doesn’t automatically mean proven.”

You don’t need a science background to avoid being misled.

Here’s the filter I use simple, practical, and hard to game:

If a provider can’t clearly explain in plain English what the treatment actually is, where it comes from, and what the protocol involves, treat it as experimental.

Experimental doesn’t automatically mean bad.

It just means: you’re stepping into uncertainty, and you deserve to know that upfront.

Look for things like:

If all you’re getting is testimonials and before/after stories, that might feel hopeful… but it’s not enough to make a serious decision.

This one is huge in stroke recovery.

Sometimes people chase a big intervention and accidentally reduce the things that are already proven to help:

So if you ever explore stem cells, my personal view is:

Don’t let it replace the fundamentals.

Treat it as an add-on decision, not the main plan.

If you’re seriously considering stem cell therapy, print this list or screenshot it.

Ask your provider:

If they can answer calmly and clearly, that’s a good sign.

If they dodge, rush, or oversell?

Pause.

I used to spend half a day digging through articles, trial registrations, and scattered resources, especially when someone asked a question about a product or protocol name I didn’t recognize.

Now I use Turnto.ai to speed up the finding part, and then I still do the most important step:

I check what matters.

That means:

If you’re the kind of person who wants to stay current, tools like that can help you find relevant research faster but the real power is still the same skill:

curiosity without getting fooled by hype.

If you’re reading this and thinking, “I just want something that works,” I get it.

But the best progress usually comes from:

If you want to go deeper, here are two ways I can support you:

And if you haven’t watched the video yet, it’s embedded above because seeing how I search and how I evaluate claims can help you do the same.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

The post Stem Cell Stroke Recovery: What the Research Says (and What It Doesn’t) appeared first on Recovery After Stroke.

There are stroke stories that arrive like lightning.

And then there are the ones that feel like a quiet, terrifying slide hour by hour until you wake up and everything is different.

For Debra Meyerson (also known as Deborah), that difference had a name: “the slow fall off a cliff.” Her husband Steve describes watching the change unfold overnight in the hospital, neurological tests every hour, skills fading, the unknown getting heavier with each check-in. And the scariest part? Not knowing where the bottom was.

This episode isn’t only about what Debra lost. It’s about what she rebuilt with aphasia, with grief, with a fierce independence that made asking for help its own mountain, and with a new definition of recovery that doesn’t depend on going back in time.

One of the most jarring elements of Debra’s experience was the way the stroke revealed itself.

Steve shares that Debra left the emergency room still talking, slurring a little, but still planning. Still believing she’d be back teaching soon. Then the overnight monitoring began, and the decline became visible.

From midnight to morning, her movement and speech changed dramatically.

By morning, she couldn’t move her right side. And she couldn’t make a sound.

That’s what makes Debra’s phrase so powerful: it captures the reality many survivors and families live through, watching ability disappear in stages, not all at once. It’s not just a medical event. It’s an emotional one.

And it changes how you experience time. The mind starts bargaining. The heart starts bracing. The body is suddenly not predictable anymore.

Debra’s stroke was ischemic, but the cause wasn’t a typical blood clot. Steve explains that it was due to a dissection, a tear in the inner wall of an artery.

In the months leading up to the stroke, there were warning signs:

Steve describes a likely “opening and closing” pattern of temporary interruptions to blood flow that didn’t show up clearly during exams because, in the moment, she appeared okay.

This is one reason caregivers can feel so haunted after the fact: you did the right things, you sought help, you went to specialists… and the stroke still happened.

That’s not failure. That’s reality.

Aphasia isn’t one experience. It’s a spectrum, and Debra’s challenge is word-finding, both in speaking and writing.

When Bill asks whether writing is easier than speaking, Debra’s answer is simple and blunt: it’s hard either way.

She also notes that dictation isn’t a shortcut.

What makes Debra’s story especially moving is how Steve describes the long arc of speech returning:

It happened during a normal moment at a table with family, searching for the name of the pig from a movie no one could remember.

And Debra suddenly blurted out:

“Babe.”

It might sound small to someone who’s never experienced aphasia. But for anyone who has, or for anyone who’s loved someone through it, that moment is enormous.

It’s proof that the brain is still reaching for language. Proof that the person is still in there, still trying to connect.

And yes, Steve mentions melodic intonation therapy, a method that attempts to engage the brain’s musical/singing pathways to support speech. Debra’s improvement, even years later, is described as gradual marginal gains that add up over time.

When Bill asks what part of her old identity was hardest to let go, Debra points to the heart of it:

This is the part many survivors don’t see coming: you’re not only recovering movement or speech. You’re grieving a version of yourself that once felt automatic.

And that grief can be complicated, because you might still look like you.

Inside, everything is renegotiated.

This is where Debra and Steve offer something that can change the trajectory of recovery: adaptation instead of abandonment.

Debra couldn’t ride a single bike anymore, but they began riding a tandem, and it became the thing they could do together vigorously, something athletic, meaningful, and shared.

Not the same.

But real.

Debra describes grief as something that shows up constantly, “every day… every hour.”

Steve offers a powerful example: becoming grandparents.

Debra was ecstatic. Over the moon.

And then, the next morning, she was furious, spring-loaded into a bad mood, snapping at everything.

Why?

Because beneath the joy was a private inventory of what she couldn’t do:

This is what “cycles of grief” looks like.

Not sadness replacing joy.

Sadness sitting next to joy.

And if survivors don’t understand that’s normal, they can interpret it as brokenness or failure.

It’s not.

It’s grief doing what grief does: reminding you of what mattered.

Care partners often disappear inside the role. Steve names a different approach, one supported early by friends who told him plainly: if you don’t take care of yourself, you’re no use to Deb.

So he set priorities:

He also acknowledges how support made that possible: family help, flexible work, and friends showing up.

Then comes a line that many couples will recognize immediately: toxic positivity.

Steve admits he struggles with sadness; he tends to solve problems, cheer people up, and push toward the bright side. But Debra doesn’t always want to be talked out of it. Sometimes she needs space to grieve without being “fixed.”

That’s the lesson:

Support isn’t always uplifting someone.

Sometimes support is staying present while they feel what they feel.

Debra’s philosophy shows up in the opening of her book and in the arc of this conversation:

“True recovery is creating a life of meaning.”

At first, recovery was about returning to who she used to be, therapy, effort, pushing hard.

Then something shifted: writing a book became a turning point. It helped her stop using her old identity as the measuring stick and start asking a new question:

“How do I rebuild a life I can feel good about with the cards I’ve been dealt?”

That idea is the bridge for so many survivors:

You don’t have to pretend you’re fine.

You don’t have to deny what you lost.

But you also don’t have to wait for a full return to start living again.

Debra Meyerson’s “slow fall off a cliff” stroke led to aphasia, grief, and a new definition of recovery: rebuilding identity with meaning.

Stroke Onward:

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Debra Meyerson

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Steve:

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Highlights:

00:00 Introduction and Background
06:11 The Experience of a Stroke: A Slow Fall Off a Cliff
22:45 Navigating Caregiving: Balancing Needs and Support
32:01 Understanding Aphasia: A Spectrum of Experiences
43:05 The Importance of Sadness in Healing
50:08 Finding Purpose Through Advocacy
53:31 Building the Stroke Onward Foundation
57:12 Advice for New Stroke Survivors

Transcript:

Bill Gasiamis (00:00)
Welcome to the recovery after stroke podcast. name is Bill. And if you’re a stroke survivor or you love someone who is you’re in the right place before we begin a genuine thank you to my Patreon supporters. After more than 10 years of hosting this show solo, your support helps cover the costs of keeping it online and helps me keep showing up for stroke survivors who need hope and direction. And thank you to everyone who supports the show in the simple ways to YouTube comments, Spotify, Apple reviews.

people who’ve grabbed my book, and even those who stick around and don’t skip the ads. It all matters more than you know. Today you’re going to meet Deborah Meyerson and her husband, Steve Zuckerman. Deborah describes her stroke as a slow fall off a cliff. And that phrase captures something so many stroke survivors experience but struggle to explain. We talk about aphasia after stroke, word finding.

The moment a single word returned and what happens when recovery stops meaning going back and starts meaning rebuilding a life you can actually feel proud of. Deborah and Steve Myerson. Welcome to the podcast.

Debra and Steve (01:08)
Steve Zuckerman That’s okay. I don’t mind being Mr. Meyerson from time to time.

Bill Gasiamis (01:17)
Steve Zuckerman, of course. I mean, I’ve seen it on every email. I’ve seen it on every conversation we’ve had, but that’s okay. I mean, you’ve probably been called worst, Steve.

Debra and Steve (01:29)
Absolutely, much worse.

Bill Gasiamis (01:32)
Debra, before the stroke, how would you have described yourself professionally, socially and personally?

Debra and Steve (01:39)
Outgoing, social, comfortable, no time to to to other’s time. Not taking up other people’s time? Yes. In contrast to me.

Bill Gasiamis (01:59)
Yes, David, you’re very needy.

Debra and Steve (02:02)
Yeah,

and ⁓ yeah, it’s really outgoing.

Bill Gasiamis (02:09)
Outgoing, yeah, fantastic.

Debra and Steve (02:11)
I’ll add, because you didn’t say it, a incredibly hardworking, self-demanding professional for whom good was never good enough. Yeah. Yeah. Yeah. Something like that.

Bill Gasiamis (02:23)
perfectionist.

Fair enough Steve. What roles defined you back then? you’re a partner, you’re a father. How did you go about your day?

Debra and Steve (02:37)
I mean, I think, you know, very similar to Deb, we were both hard driving professionals who had serious careers. We had three kids that we were raising together and both took parenting very seriously. So worked really hard, you know, to not travel at the same time, to be home for dinner, ⁓ to be at sports games. And we were both very athletic. So both things we did together and things we did separately.

I think, you know, before Deb’s stroke, most of our time and attention was focused on career and family and, you know, sort of friends were a third, but, ⁓ staying healthy and staying fit. So those were kind of all parts of, I think, who we both were. met mother, ⁓ athletic sailor, biker, ⁓

⁓ family is first in academics.

Bill Gasiamis (03:44)
and academic and what field were you guys working in?

Debra and Steve (03:48)
No, am a, Steve is not academic. I am an academic. ⁓ Deb was, you know, immediately before the stroke. Deb was a tenured professor at Stanford. She had had lots of other academic jobs before that. ⁓ We met when

I was in grad school for an MBA and Deb was getting her PhD. ⁓ So, you know, she is lot smarter than I am and was willing to work a lot harder academically than I ever was. ⁓ I’ve bounced back and forth between kind of nonprofit roles, nonprofit management roles, and a career in finance and business. So I sort of…

have moved back and forth between for-profit and not-for-profit, but always sort of on the business side of things.

Bill Gasiamis (04:50)
often say when people meet my wife, Christine, for the first time and we talk about what we do and the things that we say. I always say to people that between me and my wife, we have four degrees. And then I qualify that. say, she has four and I have zero. And ⁓ she has a master’s in psychology, but ⁓ I never went to university. I never did any of that stuff.

Debra and Steve (05:10)
Yeah.

Bill Gasiamis (05:19)
So it’s very interesting to meet somebody who’s very academic and to be a part of her life when she’s in the study zone. my gosh, like I have never studied that much, that intensely, that hard for anything. And it’s a sight to behold. And I’m not sure how people go through all the academic side, all the requirements. And then also Deb, being a mom, being a friend.

being active in your community and doing all the things that you do. I just don’t know how people fit it in. So it’s a fascinating thing to experience and then to observe other people go through.

Debra and Steve (05:57)
It’s really that we had really a lot of time to talk. It was a full life.

Bill Gasiamis (06:11)
Yeah, fantastic. What you did, Deb has described the ⁓ stroke as a slow fall off a cliff. What did it actually feel like in the first moments that the stroke happened?

Debra and Steve (06:28)
Two

weeks after my stroke, I am going to the, back to the classroom. I am really not aware of the damage. So right at the outset, Deb was kind of in denial. As the symptoms were first starting to set in, she was still talking about

you know, okay, this is annoying, but in three weeks I’m starting the semester ⁓ and genuinely believed she would. actually the slow fall off a cliff was really how I described the first full night in the hospital. This was in Reno, Nevada. ⁓ And Deb sort of left the emergency room talking.

slurring her words a little bit, but talking about how she was going to be back in the classroom. And then over the course of that night, from midnight to eight in the morning, they woke her every hour to do a neurological test, you move your arm, move your leg, point to this, you know, say this word and just her skills got worse and worse and worse. And in the morning,

She couldn’t move her right side at all and couldn’t make a sound. And that was the, that’s what we called the slow fall off the cliff because we knew at midnight that there was significant brain damage, but we didn’t see the ramifications of that damage. sort of happened over that eight hour period. ⁓ that Deb really wasn’t aware of any of that. was.

you know, kind of her brain was in survival mode. ⁓ But for myself and our oldest son, Danny, you know, that was sort of a feeling of helplessness. was watching the person you love kind of fade away or the capabilities fade away. And we didn’t know how low the bottom would be ⁓ without being able to do anything.

Bill Gasiamis (08:53)
Is there an explanation for that? Now, obviously Deb had a stroke, so that’s the overarching issue, the problem. But I’ve had a lot of stroke survivors explain their symptoms in that slow onset ⁓ situation, whereas mine were just there. I had a blade in my brain, the symptoms were there. Another person ⁓ had an ischemic stroke, bang, the symptoms were there.

So why does it take so long for some people to, for the symptoms to develop?

Debra and Steve (09:25)
I had a dissection five months ago for this stroke. I had really bad headaches.

Yeah, so five, six months before Deb’s stroke, she was having bad headaches. She had two episodes where she kind of almost lost consciousness. And one of them, she actually said to our son, call dad, I think I’m having a stroke. And by the time the EMS got there, she was fine. ⁓ Her stroke, it turned out was caused by a dissection, which is a tear.

in the inner wall of the artery. So in some ways it’s like a blood clot. It is an ischemic stroke because it’s the blockage of blood flow. But unlike most ischemic strokes, it’s not because of a blood clot. It’s because of this flap of, it’s not biologically skin, but it’s like a flap of skin coming across and blocking off the blood flow. And what they think happened, and it’s really just educated guessing, is that

for that six month period, the flap was there, but it kind of kept opening, closing, opening, closing. So she’d have temporary loss of blood flow to the brain, but not permanent loss.

Bill Gasiamis (11:04)
We’ll be back with more of Deborah Meyers’ remarkable story in just a moment, but I wanna pause here because what Deborah and Steve are describing is something a lot of us live with quietly. That feeling, you can be having a good moment and then grief shows up out of nowhere, or you’re working so hard to stay positive and it starts to feel like pressure instead of support. In the second half, we’ll go deeper into the cycles of grief.

the trap of toxic positivity and the shift that changed everything for Deborah when she stopped measuring recovery by who she used to be and started rebuilding identity with meaning. If this podcast has helped you feel less alone, you can support it by sharing this episode with one person who needs it, leaving a comment or subscribing wherever you’re watching or listening. All right, back to Deborah and Steve.

Debra and Steve (11:58)
And when she had those two events, it was probably stayed closed a little bit longer, but then opened up. But she had a scan, she went to neurologists and because every time she was examined, it was okay. They didn’t find the problem. And then when she had the stroke, it was a permanent blockage that just didn’t open back up again. And

Your question is a great one that I’ve never asked. I don’t know why, because what they told us was we can see the damage to the brain. The brain has been damaged. They can tell that on the scan, but that the impact of that damage, how it will affect your motion and your speech will play out over time. And I don’t know why that was true for Deb, whereas, as you say, for some people, it seems like the impact is immediate. And that’s a, that’s a good one. I’m going to, I’m going to

Try to research that a little bit.

Bill Gasiamis (12:58)
That’s just a curious thing, isn’t it? to sort of understand the difference between one and the other. I’m not sure whether if we find out what the difference is, whether there’s say something that a stroke survivor listening can do or a caregiver can do in that situation, like what can be done? How can it be resolved? Maybe different steps that we need to take. I don’t know, but I’d love to know if there was a doctor or a neurologist or somebody who might be able to answer that.

Maybe we need to find someone.

Debra and Steve (13:29)
The doctor and the neurologist didn’t see it. Yeah, in the period before the stroke, they didn’t see it. While we were in the hospital when the stroke was happening, what they told us was at that point, there really wasn’t anything that could be done. The damage was done. So no intervention.

would lessen the damage. ⁓ again, we are far from doctors. So there’s a lot about that that we don’t know.

Bill Gasiamis (14:08)
understood. Deb, what part of your old identity was the hardest to let go?

Debra and Steve (14:14)
The Stanford professor, athlete, had really a lot of…

One hand is so difficult and independent person.

Bill Gasiamis (14:33)
Yeah.

Debra and Steve (14:34)
I am, skiing is so, I really love to ski and I am not, I am really not able to ski.

Bill Gasiamis (14:52)
understood so you were a professor, you were independent, you were physically active and all that stuff has had to stop happening at this point in time.

Debra and Steve (15:03)
I am the…striking…crossing…cycling…we are the…the…Sieve and I…

Bill Gasiamis (15:19)
You guys used to do something tandem.

Debra and Steve (15:21)
Yes,

a lot of time in the stroke across America. Well, so I think we’re sort of answering a couple of different questions at the same time. I think what Deb was saying was early on, kind of in that first three or four years, she really, you know, was giving up her role as a Stanford professor, giving up skiing, cycling, sailing, and just the…

not being a fully independent person needing so much help. That was really a lot of the struggle early on. Deb did return to a lot of those things. And that was a big part of the recovery process was realizing that she may not be able to do them the same way she used to, but there were a lot of different things. And then the cycling, Deb can’t ride a single bike, but we started riding a tandem. And that adaptation has proven

really important for us because it’s, it’s the thing we can now do together vigorously for long periods of time. That is really a, a sport that we can do together, ⁓ and love. And so that that’s really been a, an adaptive way to get back to something, not exactly the same way as she used to do it before the stroke, but in a way that is very meaningful.

Bill Gasiamis (16:46)
A lot of stroke survivors tend to have trouble with letting go of their old identity in that they feel like they need to completely pause it and put the whole identity aside rather than adapt it and change it so that you bring over the parts that you can and you make the most of them, know. And adaptive sport is the perfect way. You see a lot of people in the Paralympics becoming gold medalists after they’ve been injured.

a sports person before their injury and now all of a sudden they’re champion gold medal winning athletes because they decided to adapt and find another way to participate. And that’s what I love about what you guys just said. That’s still able to meet the needs of that identity, but in a slightly different way. What about you, Steve? Like when Deb goes through a difficult time and

she has a stroke and then you guys come home from hospital, you’re dealing with, ⁓ well, all the changes in your life as well because you become a care, while you guys describe it as a care partner, we’ll talk about that in a moment. But as a care partner, ⁓ how do you go about doing that without, and also at the same time, protecting a little bit of your needs and making sure that your needs are met? Because a lot of caregivers, care partners,

put all their needs aside and then they make it about the person who is ⁓ recovering from stroke. And then it leads to two people becoming unwell in different ways. One potentially emotionally, mentally, and the other person physically and all the other things that stroke does.

Debra and Steve (18:36)
Yeah, I mean, I think, um, Kyle was lucky in a couple of ways. One, a very close friend very early on who had been through similar situations said, you know, don’t forget, you’ve got to take care of yourself. If you don’t, you’re of no use to Deb. And so from the very beginning, I had people reminding me. I also had a ton of support in supporting Deb. Deb’s mom,

you know, came up and lived with us for six months. ⁓ So I could go back to work a lot sooner than I otherwise would have been able to go back to work. And I was fortunate that my job was fairly flexible. ⁓ But, you know, I loved my work and it meant I wasn’t focused on the caregiving or care partnering aspects of my role 24 seven. I got to go do something else independently. ⁓

We also had a lot of friends lend support as well. So, you know, I think I basically said, I’ve got to organize around supporting Deb, no question about it. But with guidance from friends, I sort of said, okay, my three priorities are going to be exercising, eating well, and sleeping well. And I really just set those out as my goals and I created ways to do that.

wall and that was sort of my physical health but also my mental health. And so, you know, sort of a problem solver and compartmentalizer by nature. So I guess maybe I was lucky that dividing up those roles was a little more natural to me than maybe it is for others. But it also took, you know, took deliberate choice to make sure not to let myself get sucked so far into the caring piece.

that I got in healthy and was lucky enough to have support so that I was able to not let that happen.

Bill Gasiamis (20:42)
Yeah, a lot of people feel guilt like this unnecessary guilt that, I can’t leave that person alone or I can’t ⁓ look after myself or take some time to myself because the other person needs me more than I need me. And that’s an interesting thing to experience people talk about in the caregiver role where they become so overwhelmed with the need to help support the other person that they… ⁓

that they have guilt any time that they step away and allocate some care to themselves. They see caring as a role that they play, not as a thing that they also need to practice.

Debra and Steve (21:29)
Yeah, yeah. Well, I think I was also lucky because Deb is so fiercely independent that she wanted as little help as she could possibly get away with. So ⁓ she was not the kind of stroke survivor that was sort of getting mad when I walked out of the room. It was like she was trying to kick me out of the room at times that I shouldn’t leave the room. And so, you know, again, ⁓

Deb was not a demanding, again, she just wanted as little help as she could possibly survive with. And that probably made it easier for me to not feel guilty because it’s like, well, that’s what she wants. She wants me to get out of here as long as she was safe.

Bill Gasiamis (22:16)
That mindset is a really useful one. It makes it possible for people to activate neural plasticity in the most ⁓ positive way. Because some people don’t realize that when it’s hard to do something and then the easier thing is to say, Steve, can you go get me that or can you do this for me? That neural plasticity is also activated, but in a negative way. ⁓

How does your recovery or your definition of recovery evolve over time? How did it change over time?

Debra and Steve (22:57)
⁓ How did how you think about recovery change over time? The realizing I had to build realizing I had the

of my identity and my life. The same past and writing a book. ⁓ Three, four years ago, four years after my stroke, really, well, ⁓

I am really, I am so committed to doing the best. No. I mean, you know, the first three or four years after Deb’s stroke, it really was all about trying to get back to who she used to be. Therapy, therapy, therapy, therapy, therapy, work hard, we’ll get back to life as we do it. And when Deb said,

when she lost tenure and said she wanted to write a book, I thought she was nuts. was like, you know, her speech wasn’t as good then as it is now. you I was at her side when she wrote her first academic book and that was brutal and she didn’t have aphasia. So I was like, I really thought she was nuts. But in hindsight, it really was that process of writing a book that got her to turn her knowledge about identity onto herself.

that really changed her view of what recovery meant. She sort of started to let go of recovery means getting back to everything I used to be doing and recovery means how do I rebuild an identity that I can feel good about? May not be the one I’d ideally want, but in the face of my disabilities, how do I rebuild that identity so that I can rebuild a good and purposeful and meaningful life? that really was an evolution for both of us.

over the five-year book writing period. I sometimes say it was the longest, cheapest therapy session we could have gotten because it really was that kind of therapeutic journey for us. And really a lot of the 25 people are in the book and the friends and colleagues are

in the book, really a lot of the colleagues. Deb was a social scientist and a researcher and she didn’t want to write a memoir. She wanted to write a research book. It has elements of a memoir because her story and our story is threaded throughout. But, you know, we learned so much from the interviews Deb did and

and I was not involved in the interviewing process, but having that diversity of stories and understanding some of the things that were very common for stroke survivors and other things that were so different from survivor to survivor helped her, helped us on our journey. So that book writing process had so many benefits.

Bill Gasiamis (26:49)
Very therapeutic, isn’t it? I went on a similar journey with my book when I wrote it and it was about, again, sharing other people’s stories, a little bit about mine, but sharing what we had in common, know, how did we all kind of work down this path of being able to say later on that stroke was the best thing that happened. Clearly not from a health perspective or from a ⁓ life, ⁓ you know.

the risk of life perspective, from a growth perspective, from this ability to be able to ⁓ look at the situation and try and work out like, is there any silver linings? What are the silver linings? And I get a sense that you guys are, your idea of the book was in a similar nature. Do you guys happen to have a copy of the book there?

Debra and Steve (27:39)
Yes. Of course. Don’t we have it everywhere?

Bill Gasiamis (27:42)
Yeah, I hope so. Identity theft, yep. I’ve got my copy here somewhere as well. Now, how come I didn’t bring it to the desk? One second, let me bring mine. Yes. There you go, there’s mine as well. I’ve got it here as well. So it’s a really lovely book. ⁓ Hard copy. ⁓

Debra and Steve (27:52)
Yeah.

You

must have the first edition not the second edition. Because we didn’t print the second edition in hard copy so it’s not a white cover can’t tell in the photo.

Bill Gasiamis (28:07)
okay, that’s why.

That is a blue cover.

Debra and Steve (28:17)
⁓ No, the paper cover on the front.

Bill Gasiamis (28:20)
The paper cover is a white cover.

Debra and Steve (28:22)
Yeah.

So that’s actually the first edition of the book that came out in 2019. And then the second edition just came out about two months ago. ⁓ And they are largely the same. But the second edition has a new preface that sort of, because we wrote that in 2019 and then had five years of working on Stroke Onward and learning more, we kind of brought our story up to 2020.

2024 and then two chapters at the end, one with some of the insights we’ve learned ⁓ kind of since writing the first book and a final chapter about what we think might need to change in the US healthcare system to better support stroke survivors. So we’ll have to get you a copy of the new one. Yeah.

Bill Gasiamis (29:13)
Yeah, why not? Signed copy, thank you very much. ⁓

Debra and Steve (29:15)
Yeah,

and the Julia Wieland. ⁓ It’s available on audiobook as well via, we were fortunate to be able to work with a great narrator named Julia Wieland, who’s an award winning audiobook narrator and actually has a business called Audio Brary that she started to really honor narrators and help promote the narrating of audio.

the narrators of audio books. ⁓ well, make sure you send us an email with the right mailing address and we’ll get you new copy.

Bill Gasiamis (29:55)
Yeah, that’d be lovely. So what I’ll do also is on the show notes, there’ll be all the links for where people can buy the book, right? We won’t need to talk about that. We’ll just ensure that they’re included on the show notes. I love the opening page in the book. ⁓ It’s written, I imagine, I believe that’s Deborah’s writing.

Debra and Steve (30:14)
⁓ yeah, yeah. yes, we have a signed copy of the first edition. Yeah.

Bill Gasiamis (30:20)
So it says true recovery is creating a life of meaning. Deborah Meyerson. Yeah, you guys sent me that quite a while ago. By the time we actually connected, so much time had passed. There was a lot of people involved in getting us together. And you know, I’m a stroke survivor too. So things slipped my mind and we began this conversation to try and get together literally, I think about a year earlier. So I love that I have this.

this copy and I’m looking forward to the updated one. ⁓ And it’s just great that one of the first things that Deb decided to do was write a book after all the troubles. Now your particular aphasia Deb, I’m wondering is that also, does that make it difficult for you to get words out of your head in your writing as well and typing?

Debra and Steve (31:13)
Yes, dictation is my dictation. It’s so hard. Speaking and writing isn’t the same.

Bill Gasiamis (31:31)
Speaking and writing is the same kind of level of difficulty.

Debra and Steve (31:35)
Yeah, and the ⁓ other survivors in aphasia didn’t, Michael is. Want me to help? Yeah. Yeah, just that, and I think you know that there are so many different ways aphasia manifests itself and word finding is Deb’s challenge and it’s true whether she’s speaking or writing.

other people and a guy who rode cross country with us, Michael Obellomiya, he has fluent aphasia. So he speaks very fluently, but sometimes the words that come out aren’t what he means them to be. So the meaning of what he says, even though he says it very fluently, and he also has, I think, some degree of receptive aphasia so that he hears what people are saying, but sometimes the instruction or the detail doesn’t.

register for him and so aphasia can be very very different for different people.

Bill Gasiamis (32:37)
Yeah, there’s definitely a spectrum of aphasia. then sometimes I get to interview people really early on in their journey with aphasia and, ⁓ and speech is extremely difficult. And then later on, if I meet them again, a few years down the track, they have ⁓ an improvement somewhat. ⁓ perhaps there’s still some difficulty there, but they can often improve. ⁓ how much different was the

Debra and Steve (33:08)
15 years ago? I don’t know speech at all.

Bill Gasiamis (33:23)
No speech at all.

Debra and Steve (33:24)
Yeah. So Deb, it took several weeks for her to even be able to create sounds, maybe a month or two before she was sort of repeating words. ⁓ We have a great story of the first time Deb actually produced a word out of her brain. So it wasn’t an answer to a question or a therapy exercise.

but we were sitting around a table and a bunch of people who hadn’t had strokes were saying, what’s that? No, my family. Yeah, with your brother. No, our family. Yeah. Danny and… Okay, anyway. We were talking about, what was that movie where the guy trained a pig to…

do a dog show and what was the pig’s name and none of us could remember it and Deb just blurted out, babe. And it was like we started screaming and shouting because it was the first time that something that started as an original thought in her head actually got out. And that was like four months after her stroke. ⁓ A year after her stroke, it was really just isolated words.

⁓ She then did a clinical trial with something called melodic intonation, a kind of speech therapy that tries to tap into the other side of the brain, the singing side of the brain. And then I would say, you know, it’s been, mean, Deb’s speech is still getting better. So it’s just marginal improvement ⁓ over time.

Bill Gasiamis (35:10)
Yeah, Deb, what parts of Professor Deborah Meyerson remain and what’s entirely new now?

Debra and Steve (35:19)
⁓ The sharing knowledge and trading knowledge is the same. The new is how I do it. More constraints, I need help.

really help and I am so bad at asking. Really bad at asking. I have really a lot of phases of classes and

Ballroom classes, you know ballroom dancing. Yeah, no In the work we do Deb’s favorite thing to do is to teach so we’ve been invited, you know ⁓ Quite a few speech therapists in the United States are using identity theft as part of the curriculum in their aphasia course in the speech language pathology programs

Bill Gasiamis (36:28)
So

speaker-2 (36:28)
I’ll be.

Debra and Steve (36:48)
⁓ and we’ve been invited to visit and talk in classes. And Deb just loves that because it’s back to sharing knowledge. It’s a different kind of knowledge. It’s not about the work she did before her stroke, but it’s about the work and the life experience since. that is still, Professor Deb is still very much with us.

Bill Gasiamis (37:14)
Yeah, Professor Deb, fiercely independent, ⁓ doesn’t like to ask for help, ⁓ still prefers to kind of battle on and get things done as much as possible and suffer through the difficulty of that and then eventually ask for help. Do you kind of eventually?

Debra and Steve (37:32)
Yeah,

yeah, you skipped the part about correcting everything her husband says. That’s not quite exactly right.

Bill Gasiamis (37:40)
Well, that’s part of the course there, Steve. That’s exactly how it’s meant to be. And you should be better at being more accurate with what you have to say.

Debra and Steve (37:49)
I thought we’d be on the same side on this one.

Bill Gasiamis (37:53)
Sometimes, sometimes as a host, you know, I have to pick my hero and as a husband, I truly and totally get you. Deb, you describe experiencing cycles of grief. ⁓ What does that actually look like in a day-to-day life now? And I kind of get a sense of what cycles of grief would mean, but I’d love to hear your thoughts, your version of what that means.

Debra and Steve (38:22)
Every day, hour every day, small ways and big ways. Like one year ago,

Well, grandmothers. Can I correct you? It was 16 months ago. I’m going to get her back. Yeah. That’s what she does to me all the time. I am really happy. Make sure you explain. don’t know if they would have caught what it was that made you so happy. Grandmother. Sarah, Danny and Vivian.

I know, you don’t have to tell me. Just that we became grandparents for the first time. And Deb was ecstatic. I am so happy and also really frustrated.

And I don’t… crawling… no. You want me to help? I mean, you know, it’s sort of the day we got there, the day after the baby was born in New York and Deb was over the moon and the next morning…

We were walking back to the hospital and Deb was just spring-loaded to the pissed off position. She was getting mad at me for everything and anything and she was clearly in an unbelievably bad mood. And when I could finally get her to say what was wrong, it was that she had been playing all night and all morning all the ways in which she couldn’t be the grandmother she wanted to be. She couldn’t hold the baby. She couldn’t change a diaper. She couldn’t, you know,

spell the kids later on to give them a break by herself because she wouldn’t be able to chase no one is our grandson around. And so she had had really kind of gone into grieving about what she had lost just in the moment when she was experiencing the greatest joy in her life. And that’s an extreme example of a cycle of grief. And but it happens, as Deb was saying, it happens.

every hour, maybe three times an hour where you’re doing something that’s good, but then it reminds you of how you used to do that same thing. so, you know, when we talk about and write about cycles of grief, it’s the importance of giving yourself that space to grieve because it’s human. You lost something important and it’s human to let yourself acknowledge that.

But then how do you get through that and get back to the good part and not let that grief trap you? And that story from 16 months ago in New York is sort of the, that’s the poster child, but it happens in big ways and small ways every day, 10 times a day.

Bill Gasiamis (42:00)
Sadness is a thing that happens to people all the time and it’s about knowing how to navigate it. And I think people generally lack the tools to navigate sadness. They lack the tools to ⁓ deal with it, to know what to do with it. But I think there needs to be some kind of information put out there. Like you’re sad. Okay. So what does it mean? What can it mean? What can you do with it? How can you transform it? Is it okay to sit in it? ⁓

What have you guys learned about the need for sadness in healing?

Debra and Steve (42:35)
grief and sadness is so important and through the really once it’s an hour.

From my perspective, I have learned a ton about sadness because I don’t have a good relationship with sadness. In most cases, it’s a great thing. just, you know, I’m a cup is nine tenths full person all the time and I tend to see the positive and that’s often very good. But it makes it really hard for me to live with other people’s sadness without trying to solve the problem.

Bill Gasiamis (43:12)
Hmm.

Debra and Steve (43:35)
And we actually came up with a phrase because sometimes if I get positive when Deb is sad, it just pisses her off. She doesn’t want to be talked out of it. And so we now talk about that dynamic as toxic positivity because, you know, most people think of positivity as such a positive thing. And yet

If someone needs to just live in sadness for a little while, positivity can be really toxic. And I think that’s been my greatest learning, maybe growth is sort of understanding that better. I still fall into the trap all the time. devil tell you there are way too many times when, you know, my attempts to cheer her up are not welcomed.

but at least I’m aware of it now. ⁓ And a little less likely to go there quite as quickly.

Bill Gasiamis (44:38)
Hmm. What I, what I noticed when people were coming to see me is that it was about them. They would come to see me about them. It wasn’t about me and what they made them do. What made what their instinct was, was to, if I felt better, they felt better and all they wanted to do was feel better and not be uncomfortable and not be struggling in their own ⁓ mind about what it’s like.

to visit Bill who’s unwell. And that was the interesting part. It’s like, no, no, I am feeling unwell. I am going to remain feeling unwell. And your problem with it is your problem with it. You need to deal with how you feel about me feeling unwell. And I appreciate the empathy, the sympathy, the care I do. But actually, when you visit me, it shouldn’t be about you. It shouldn’t be, I’m gonna go and visit Bill.

and I hope he’s well because I don’t want to experience him being unwell. It should be about you’re just gonna go visit Bill however you find him, whatever state he’s in, whatever condition he’s in, and therefore ⁓ that I think creates an opportunity for growth and that person needs to consider how they need to grow to adapt to this new relationship that they have with Bill.

⁓ which is based now around Bill’s challenges, Bill’s problems, Bill’s surgery, Bill’s pos- the possibility that Bill won’t be around in a few months or whatever. Do you know what I mean? So it’s like, ⁓ all, all the, ⁓ the well-meaning part of it is well received, but then it’s about everyone has a, has to step up and experience growth in this new relationship that we have. And some people are not willing to do it and then they don’t come at all.

They’re the people who I find other most interesting and maybe ⁓ the most follow their instincts better than everybody where they might go, well, I’m going to go and say, Bill, he’s all messed up. ⁓ I don’t know how I’m going to deal with that. can’t cope with that. And rather than going there and being a party pooper or not knowing what to say or saying the wrong thing, maybe I won’t go at all. And they kind of create space.

Debra and Steve (46:58)
So.

Bill Gasiamis (47:01)
for your recovery to happen without you having to experience their version of it.

Debra and Steve (47:09)
Yeah, that’s it. That’s really interesting to hear you talk about it that way. And I would say very generous to hear you talk about it that way, because most of the time when we’ve heard people talk about it’s that because people talk about the fact that because other people don’t know what to say, they don’t say anything or they don’t come.

But that then creates an isolation that’s unwanted. You’re talking about it as a, maybe that’s a good thing. They’re giving me space, given their skill or willingness to deal with it. Whereas I think a lot of people feel that when people just disappear because they don’t know what to say, that’s a lack of caring and a lack of engagement. ⁓

interesting to hear your take on it. think there’s a close cousin to this that Deb felt very intensely is that some people in the attempt to be understanding and supportive really took on an air of pity. And that there were some people that

that we had to ask not to come if they couldn’t change how they were relating to Deb because it was such a like, ⁓ you poor thing that was incredibly disempowering. Whereas there were other people who had the skill to be empathetic in a supportive way.

And so, I mean, in some ways, I think we’ve learned a lot, not that we necessarily do it right all the time, but we’ve learned a lot about how to try to support other people by what has and hasn’t worked in supporting us.

Bill Gasiamis (49:20)
Yeah, it’s a deeply interesting conversation because people get offended when they need people the most that don’t turn up. And I, and I understand that part of it as well. And then in, in time, ⁓ I was, I was like that at the beginning, but then in time, I kind of realized that, okay, this is actually not about me. It’s about them. They’re the ones struggling with my condition. They don’t know how to be. And maybe it’s okay for them.

not to be around me because I wouldn’t be able to deal with their energy anyway. ⁓ yeah. So Deb, what made you turn to advocacy? What made you decide that you’re gonna be an advocate in this space?

Debra and Steve (50:08)
⁓

Feeling purpose and meaning. Survivors? Yes. And caregivers? Yes. Really a lot of risky is really… ⁓

medical, medical. Yeah. I mean, I I, I know what Deb is trying to say, which is, you know, once she got past the life threatening part and kind of on her way and was relatively independent, she was drawn back to saying, I want to live a life that has meaning and purpose. And so how

in this new state, can I do that? And Deb, as I’m sure you know by now, doesn’t think small, she thinks big. And so what she’s saying is, yes, I want to help other people, other survivors, other care partners, but really we need a better system. Like I can only help so many people by myself, but if we can actually advocate for a better healthcare system in the United States that treats stroke differently.

then maybe we can make a difference for a lot of people. that’s kind of the journey we’re on now. the survivors and caregivers, advocacy is so important to California or even the state.

Bill Gasiamis (52:05)
Yeah, advocacy is very important ⁓ and I love that I Love that you become an advocate and then you find your purpose and your meaning you don’t set out to Find your purpose and your meaning and then think what should I do to find my purpose of my meaning it tends to catch Catch go around the other way. I’m gonna go and help other people and then all of a sudden it’s like, ⁓ this is really meaningful I’m enjoying doing this and raising awareness about that condition

that we’ve experienced and the challenges that we are facing. And wow, why don’t we make a change on a as big a scale as possible? Why don’t we try to influence the system to take a different approach because it’s maybe missing something that we see because we’re in a different, we have a different perspective than the people who are providing the healthcare, even though they’ve got a very big kind of, you know, their purpose is to help people as well.

their perspective comes from a different angle and lived experience, I think is tremendously important and ⁓ missed and it’s a big missed opportunity if ⁓ lived experience is not part of that defining of how to offer services to people experiencing or recovering a stroke or how to support people after they’ve experienced or recovering from a stroke. ⁓ I love that. So that

led you guys to develop the foundation, stroke onward. it a foundation? it a, tell us a little bit about stroke onward.

Debra and Steve (53:42)
In US jargon, we’d call it a nonprofit. Generally, foundations are entities that have a big endowment and give money away. We wish we had a big endowment, but we don’t. We need to find people who want to support our work and make donations to our nonprofit. And yeah, we now have a small team. ⁓ Deb and I

given our age, given that we’re grandparents, we were hoping not to be 24 sevens. So needed people who were good at building nonprofits who were a little earlier in their careers. And we’ve got a small team, a CEO, a program manager and a couple of part-time people ⁓ who are running a bunch of programs. We’re trying to stay focused. We’re trying to build community with stroke survivors, care partners, medical professionals.

We’ve got an online community called the Stroke Onward Community Circle that we just launched earlier this year. We’re hosting events, ⁓ some in medical settings that we call Stroke Care Onward to really talk with both ⁓ a diverse group of medical professionals, as well as survivors and care partners about what’s missing in the system and how it can be improved. ⁓ And then a program that we call the Stroke Monologues, which is sort of a

a TEDx for stroke survivors where survivors, care partners, medical professionals can really tell their story of the emotional journey in recovery. And we want to use all of that to sort of build a platform to drive system change. That’s kind of what we’re trying to build with Stroke Onward.

Bill Gasiamis (55:32)
I love that. I love that TEDx component of it. ⁓ People actually get to talk about it and put out stories and content in that way as well.

Debra and Steve (55:35)
Yeah.

⁓

Yeah. Denver, Pittsburgh, ⁓ Boston, and Oakland and San Francisco. We’ve now done six shows of the stroke monologues and a big part about our work in the coming year.

is really trying to think about how that might scale. can we, you know, it’s a very time consuming and therefore expensive to host events all the time. So how we can work with other organizations and leverage the idea ⁓ so that more people can get on stage and tell their story. ⁓ Also how we capture those stories on video and how we can do it virtually. So that’s a big part of what the team is thinking about is, you know, how do we

Cause you know, at the end of the day, we can only do as much as we can raise the money to hire the people to do. So, that, that developing a strategy that hopefully can scale and track the resources that it takes to make more impact. That’s kind of job one for 2026.

Bill Gasiamis (57:05)
Yeah, I love it. Lucky you haven’t got enough jobs. That’s a good job to have though, right? ⁓ So if you were sitting, if you guys were both sitting with a couple just beginning this journey, what would you want them to know? What’s the first thing that you would want them to know?

Debra and Steve (57:12)
Yeah.

Don’t have a stroke.

Bill Gasiamis (57:28)
Profound.

Debra and Steve (57:29)
Yeah. Yeah. I

mean, I think, you know, it’s a journey and think of it as a journey and try to get as much as much of your capabilities back as you can. But don’t think of recovery as just that. It’s a much broader journey than that. It’s rebuilding identity. It’s finding ways to adapt.

to do the things you love to do, to do the things that bring you meaning and purpose and create that journey for yourself. Nobody else’s journey is gonna be the right model for yours. So give yourself the time, space, learn from others, but learn from what’s in your heart as to the life you wanna build with the cards you’ve been dealt.

Bill Gasiamis (58:25)
Yeah. What are some of the practices or habits that have helped you guys as a couple, as partners stay connected?

Debra and Steve (58:34)
⁓ It’s, it’s hard. mean, and we’ve gone through phases, ⁓ where I think, you know, in some ways early on after the stroke, we may have been as close or closer than we’ve ever been. as Deb got better ironically and wanted to do more.

Bill Gasiamis (58:39)
You

Debra and Steve (59:01)
that created a different kind of stress for us. ⁓ stress is the key. No, stress is not the beauty. I had so much stress. Yeah. And sometimes I say stress is a function of the gap between aspiration and capability and

while Deb’s capabilities keep growing, I think maybe her aspirations grow faster. And the question then says, how do you fill that gap? And so I think Deb struggles with that. And then for me, a big struggle is, so how much do I change my life to support Deb in filling that gap versus the things I might want to do that I still can do? So.

You know, when Deb decided to write a book, I really wasn’t willing to give up my other nonprofit career, which was very meaningful to me. And I felt like I was midstream, but we had to find other ways in addition to my help nights and weekends to get Deb help so she could write the book she wanted to write. Whereas when the book came out and we decided to create Stroke Onward, that was a different point in time. And I was sort of willing to.

cut back from that career to come build something with Deb. So I think again, we hate to give advice because everybody’s journey is different, but things change and go with that change. Don’t get locked into a view of what the balance in relationship should be. Recognize that that’s gonna be a never ending process of

creating and recreating and recreating a balance that works for both of us.

Bill Gasiamis (1:01:04)
Hmm. What’s interesting. Some of the things that I’ve gone through with my wife is that I’ve kind of understood that she can’t be all things that I needed to be for me. And I can’t be all things that she needs me to be for her. And we need to seek that things where we lack the ability to deal to provide those things for the other person. The other person needs to find a way to accomplish those tasks needs, have those needs met, whatever with

in some other way. for example, my whole thing was feeling sad and I needed someone to talk me through it and my wife wasn’t skilled enough to talk me through it, well, it would be necessary for me to seek that support from somebody else, a counselor, a coach, whomever, rather than trying to get blood out of a stone, somebody who doesn’t have the capability to support me in that way. Why would I expect that person to…

all of a sudden step up while they’re doing all these other things to get through the difficult time that we were going on to that we’re dealing with. So that was kind of my learning. was like, I can’t expect my wife to be everything I need from her. There’ll be other people who can do that. Who are they? And that’s why the podcast happened because I’ve been talking about this since 2012 and since 2012 and

⁓ well, yeah, that’s 2012 as well. 2012 anyhow. ⁓ I’ve been talking about it since.

Debra and Steve (1:02:41)
You’re both our roles. You’re saying it and then correcting yourself.

Bill Gasiamis (1:02:45)
Yeah. Yeah. Yeah. I have a part of me that corrects me as I go along in life. Yeah. Sometimes I don’t listen to it. ⁓ but today was a good one. The thing about it is I have a need, a deep need to talk about it all the time. That’s why I’ve done nearly 400 episodes and those 400 episodes are therapy sessions. Every time I sit down and have a conversation with somebody and I, and even though my wife has a

I, ⁓ masters in psychology. I wouldn’t put her through 400 conversations about my stroke every single day or every second day. You know, it’s not fair because it’s not her role. I, ⁓ I talked to her about the things that we can discuss that are important, for the relationship and for how we go about our business as a couple. But then there’s those other things that.

she can’t offer her perspective because only stroke survivors know how to do that. And I would never want her to know how to ⁓ relate to me having had a stroke and having the deficits that I have and how it feels to be in my body. I would never want her to be able to relate to me. So ⁓ it’s, that’s kind of how I see, you know, the couple dynamic has to play out. have to just honor

the things that each of us can bring to the table and then go elsewhere to ⁓ have our needs met if there’s needs that are left unmet.

Debra and Steve (1:04:23)
Yeah. Really. Well, it’s good to know that if this is a ⁓ helpful therapy session for you, you won’t mind if we send you a bill. Yeah.

Bill Gasiamis (1:04:32)
Yeah. Yeah. Send it along with the book. Just put it in the front cover and then, and then I’ll make a payment. ⁓ Well guys, it’s really lovely to meet you in person and have a conversation with you. Have the opportunity to share your mission as well. Raise awareness about the book, raise awareness about stroke onward. I love your work. ⁓ And I wish you all the best with all of your

endeavors, personal, professional, not for profit. And yeah, I just love the way that this is another example of how you can respond to stroke as individuals and then also as a couple.

Debra and Steve (1:05:18)
Yeah, thank you. Well, and we hope you’ll join our online community and that includes the opportunity to do live events. yes. And maybe there are some additional therapy sessions. Yes. On our platform and chat with people and well, all over the place. So yeah, please join us.

Bill Gasiamis (1:05:43)
That sounds like a plan. Well, that’s a wrap on my conversation with Deborah and Steve. If Deborah’s slow fall off a cliff description resonated with you, leave a comment and tell me what part of your recovery has been the hardest to explain to other people. And if you’re a care partner, I’d love to hear what you needed most early on. You’ll find the links to Deborah and Steve’s work, their book, identity theft and their nonprofit stroke onward in the show notes.

And if you’d like to go deeper with me, grab my book, The Unexpected Way That a Stroke Became the Best Thing That Happened via recoveryafterstroke.com/book. Also, you can support the podcast on Patreon by going to patreon.com/recoveryafterstroke. Thank you for being here. And remember, you’re not alone in this journey.

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 Gassiamus.

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. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator.

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The post Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means appeared first on Recovery After Stroke.

Some stroke survivors are told a version of the same sentence in hospital: “After three months, what you have is what you’ll have.”

Andrew Stops didn’t buy it, not because he was naïve, but because he needed a reason to keep showing up for rehab when nobody could give him a straight answer about what “recovery” would look like.

Four years after his ischemic stroke, and 18 months after a stroke etanercept injection, Andrew is back to share what improved quickly, what continued to evolve, and how he made peace with research results that didn’t match his lived experience.

When people reach out about perispinal etanercept (often discussed as “etanercept after stroke”), they’re rarely asking for a science lecture.

They’re asking:

Those questions are valid. They’re also heavy, because the stakes are high: the treatment is expensive, travel can be intense, and the emotional cost of hoping—then not getting results—can be brutal.

Andrew’s stroke most impacted his right side. Early on, he had:

He worked hard to walk again quickly, using practical supports early (including an elastic extension on his shoe to help keep his foot up). But his bigger mission was clear: find ways to complement rehab—because medical staff couldn’t give him a timeline, and he felt a “lack of hope” from their perspective.

That’s a common moment for survivors: you’re doing the work, but you also want a map.

Before etanercept entered the picture, Andrew leaned on what had helped him before: hyperbaric oxygen therapy (HBOT). He had a history of a brain tumor and had used hyperbaric previously for healing, so he rented a soft-shell chamber at home for three months and went in daily for 90 minutes.

Andrew was careful with his claims: he couldn’t measure physiological changes in real time at home. But he could measure something important, his ability to cope.

HBOT became a daily “warm cocoon” where he could breathe oxygen-rich air and calm his nervous system. For him, that mental-health benefit wasn’t a side note. It was fuel.

And when you’re rebuilding your life after stroke, fuel matters.

Andrew discovered perispinal etanercept through a media story about Dr. Tobinick’s clinic, and after about a year, decided he needed to know he’d tried everything he reasonably could.

He crowdfunded to afford the trip and treatment.

That detail matters because it introduces the single biggest ethical challenge around treatments like this:

Even if you try to stay balanced, it’s hard not to hang hope on something that costs time, money, energy, and pride.

Andrew doesn’t tell people to go. In fact, when people contact him now (he’s spoken to more than 50), he’s careful:

That’s responsible guidance from someone who understands how fragile hope can become when it’s under financial pressure.

Andrew’s report of early changes is striking not because it proves causality, but because it describes specific, functional shifts:

He noticed cognitive fatigue dial down immediately. He still experiences it, but it takes far more to trigger now.

The most vivid example: on the way to the clinic, he used an eye mask, noise-cancelling headphones, and had medication ready for overload. On the return flight 24 hours later, he didn’t need any of it. He stood in the airport like any other traveler.

A persistent cramp in his right calf eased significantly.

He noticed improvement in emotional control, something many stroke survivors quietly struggle with and often feel ashamed about.

His right hand went from feeling like it moved “in molasses” to loosening up.

And here’s where the “18 months on” part becomes powerful: Andrew recently discovered he could play scales on his clarinet again, covering holes with independent finger movement, something he hadn’t been able to do since the stroke.

That’s not framed as: “etanercept did this.” It’s framed as: recovery kept unfolding.

“Your stroke recovery doesn’t stop. There’s no end date.”

Then came the PESTO trial results, which (as discussed in your episode) reported that etanercept was not more effective than placebo in the studied group.

This is where Andrew’s story gets even more human.

He didn’t just shrug it off.

He described feeling guilt, even fraudulence, because he couldn’t reconcile the research headline with his lived experience.

That response is deeply relatable: when something helps you, and others don’t get the same outcome, it can feel like survivor’s guilt, especially when people have spent enormous money and emotional energy.

In your conversation, Bill raises a hypothesis, not a proven conclusion that deserves careful attention:

If etanercept struggles to cross the blood–brain barrier in general, could certain people have a more permeable barrier due to factors like stroke, surgery, or radiation therapy (which Andrew had)?

Andrew himself wonders if radiation could be part of his “why.”

This isn’t a sales pitch. It’s a research direction, a possible explanation for why outcomes might vary so dramatically between people.

If that line of thinking ever becomes clinically actionable, it could change the whole decision-making process for survivors, because the question would shift from “roll the dice” to “are you likely to be a candidate?”

If you’re reading this because you’re considering a stroke etanercept injection, here are the grounded takeaways from Andrew’s 18-month update:

If you want ongoing encouragement and tools to navigate recovery (and the emotional complexity that comes with it), Bill’s work is built for that:

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

18 months later, Andrew shares what improved after etanercept fatigue, function, and the tough questions raised by the PESTO trial.

Highlights:

00:00 Introduction and Background

Transcript:

Bill Gasiamis (00:00)

has bought my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, and even the folks who don’t skip the ads, thank you. All of it helps this podcast reach the people who are searching for answers late at night when recovery feels heavy. Now today’s episode is a follow-up many of you have asked for. Andrew Stopps is back, and we’re talking about stroke and etanusept injections 18 months on.

We’ll unpack what changed for him, what’s continued to improve and how he processed the PESTO trial results that found Etanercapt wasn’t more effective than the placebo. If you’re considering this treatment or you’re trying to make sense of conflicting stories and research, this conversation will help you think more clearly without hype and without fear. All right, let’s get into it.

Bill Gasiamis (01:17)

Andrew (01:20)

back.

Bill Gasiamis (01:22)

Andrew (01:30)

have been before that even, probably a couple of weeks before that.

Bill Gasiamis (01:34)

Andrew (01:36)

Bill Gasiamis (02:03)

Andrew (02:23)

Bill Gasiamis (02:40)

You were very gracious as well as you. I’ve interviewed, by the way, a bunch of other about Etanercept. And one of them was Dwayne Simple. Dwayne also gets a few people who I sent to him that are in Canada because Dwayne is in Canada. He’s had Etanercept and it worked out for And then I’ve spoken to another lady from Australia, Karen.

who also a shot or two of Etanercept and had positive results. But of course, Etanercept is extremely controversial. And one of the challenges with it is that it doesn’t work for everybody. And there’s only one way of knowing if it’s going to work is to go and get the injection to pay the money and then to kind of roll the dice and see what happens. Now, that’s what we’re going to talk about today. But before we talk about the new

Andrew (03:37)

Mm-hmm.

Bill Gasiamis (03:58)

Andrew (04:17)

But otherwise physically that was really it for the stroke. And I worked really hard to get myself walking again as quickly as I could. And so when I got home I could walk but I’d had an elastic extension on my shoe to help keep my foot up. And I…

From that moment, I was looking for ways to complement my rehab to help me recover fully from the stroke because the doctors and people in the hospital, no one could say to me like how long, how I was going to be, how much recovery, what I could expect, like anything. was just everyone’s unique. And I understand that, but there was a ⁓ lack of like hope from their perspective.

So the first thing we did when we got me home was I’d heard, well, I knew that hyperbaric chambers helped healing. And I knew that because I had a, previously had a brain tumor and I used hyperbaric to help me heal from that. It was really, really good. So we hired one, we rented one for three months and had a soft shell chamber at home, which I went in every day.

for 90 minutes and it was fantastic. I can’t say how, if that physiologically helped because I don’t have access to an MRI at home or anything. Yeah, I can’t measure it, but it did wonders for my mental health. Like it was brilliant because for an hour and half every day, I got to sit in this nice warm cocoon shell, they do not over me.

Bill Gasiamis (06:01)

Andrew (06:15)

It’s hard to say if it helped me physically, but I certainly got back my ability to move my foot. My arm was another beast though, and that took a long time. That took about two months before it even moved slightly before I could just, you know, move it up and down. So getting back the function of my arm was a longer process. So I kept researching online and finding, you know, other ways that I could help myself to recover.

That’s when came across the 60 minutes interview with Dr. Tobinick and the clinic and the lady from Australia.

Bill Gasiamis (07:17)

by the way, 60 minutes has taken down. You can only find that on Dr. Tobinick’s YouTube channel now. Yeah, right. So that’s interesting just as a thing that I observed that people might find interesting as well to hear. It doesn’t mean anything perhaps.

Andrew (07:24)

Yeah, I mean, yeah, can be anything anyway, so I found that I watched it. I was really really inspired and I thought well I’ve got to know that I have tried everything like if this is how I’m going to be and this was After one year and I was told that you know after three months or That pretty much what I had after three months was was how I was going to be so

I figured after one year, I’ve got to try everything. And so I crowdfunded and had about 30 or 1000.

Bill Gasiamis (08:13)

US, New Zealand dollars.

Andrew (08:22)

Bill Gasiamis (08:37)

20, 24, 18 months ago.

Andrew (08:40)

⁓ So yeah, that was the 32nd story of Andrew’s stroke recovery.

Bill Gasiamis (09:04)

It’s 521 likes and it has just a ton of comments, just a ton, a ton of comments. Now, one other thing that has happened since then is I haven’t been able to find people who are willing to talk about Etanercept who did not have positive results when they went to Dr. Tobinick’s clinic. just, people don’t want to be interviewed if it’s about that. It seems as though it’s been really hard, right? So.

I can’t give this balanced view of here’s somebody who has had good results, here’s somebody who hasn’t had results. They comment on the YouTube comments and they send me emails about it, but they don’t really tell me whether or not they will join me on the podcast to discuss it properly. recently the Griffith University study came out about Perispinal Etanercept and it had some positive results. It didn’t find

that it was able to help restore certain functions, et cetera, but it did have an impact on pain relief for some people. Now, after that, the highly anticipated study was the one from the Flory Institute here in Australia called the PESTO trial. I’ll share my screen and I’ll put it on the screen while we chat about it, right? We’re gonna chat about what if.

what it found, Andrew, just so that we can bring people up to speed so they can just hear a conversation about it.

Bill Gasiamis (10:50)

And we’ll talk about the biggest question. If the PESTO trial says the Etanercept shouldn’t work better than the placebo, then why do some people still report a night and day difference?

Bill Gasiamis (11:30)

reporting on his findings. He has presented these findings at stroke conferences around the world. And what was interesting was that this study started in, I think, 2018. And then because of COVID had to be paused, amongst other things. And then finally, all the research was reviewed and it became available at the beginning of 2025. And then it’s been out probably for about seven or eight months now.

And what they found was that the, and they’re being a little bit provocative here calling it a miracle cure, but what they found was that a perispinal etanusept, the arthritis drug, ⁓ was not effective in treating people that were experiencing symptoms because of a stroke anymore.

than the placebo. So what they found was that the people on the placebo who ⁓ received the placebo, 56 % of them had a positive result from the placebo as opposed to less than 56 % of people who were actually using the Etanusept. And the reason being, they say, is because the drug doesn’t have the capability of crossing

the blood-brain barrier to get to where the ⁓ inflammation is and to actually ⁓ decrease the inflammation. In arthritis, for example, the inflammation is in the joints, which are not part of the brain. There is no blood-brain barrier or some barrier that stops the atanasip from going there. And therefore, when people get injected to experience relief from ⁓

the symptoms of rheumatoid arthritis, they do experience that relief sometimes almost immediately, et cetera. And ⁓ as a result of that, the guys published the study and basically concluded that it is not effective and more research needs to be done to understand why or why not it works for some people and why it doesn’t for others. And I’ve had a couple of

kind of ideas since then. And I’ll stop sharing my screen now because we can go back to just you and I, Andrew. And I’ve had some ideas as to how do I then talk to people about that, right? So I know I’ve interviewed Andrew, five other people that I’ve interviewed at least who said they had a positive result. And I should tell people there’s people who had a positive result, right? And then there’s the other people on the other side of the spectrum, which are really hostile saying like, it’s snake oil.

My idea is that even if you go there and you receive Etanercept and it works when it’s not meant to and it’s just a placebo working because you’ve got high expectations of it working. You need it to work. You’ve invested $30,000. You you’ve traveled half a way across the world. Even if it works and it didn’t cross your blood brain barrier, to me, that’s a tick, right? That’s like.

It worked fantastic. People improve their function. They got their life back. The body is very powerful. It can achieve amazing things. Who cares how it did that? A B, your blood brain barrier might be compromised. So there is a thing called leaky gut. We’ve heard about leaky gut. It is a compromised gut barrier which allows toxins to escape the gut and get into the blood.

and causes a lot of autoimmune conditions. The same thing is possible for the blood brain barrier. If you’ve got a really compromised blood brain barrier because you’ve had a stroke or you’ve had brain surgery or something like that, it’s possible.

Andrew (15:47)

radiation therapy, which I have.

Bill Gasiamis (15:50)

you know, through no fault of their own, I either have a really healthy blood brain barrier and Etanercept can’t cross it or have a compromised blood brain barrier and Etanercept can cross it. And therefore they experience positive results. But the issue then is how do we know? How can we work that out for people, you know, before they go and drop 30 grand on a treatment that they may not get a result for. Now.

That’s my thinking about it, right? But I still send people to you and I still send you these studies as they come up, just so that I can say, Andrew, I need your feedback. I need you to talk to me. I need you to tell me something. Like, where do you stand on all of this? I’m going to keep sending people to you who reach out to me to speak to Andrew because they’re interested. So like, how does that conversation go in your head and then with the people that you connect with?

Andrew (17:09)

So you’ve got to go like I did and don’t go with any expectations. Just go, just know that you’ve tried everything you can to help your recovery. That’s all. And so that’s how that conversation usually goes. They ask me lots of questions about what it feels like, what the place is like, what Dr. Tobinick was like.

just all the sort of the mechanical questions around it. But generally, it’s, I don’t know whether I should go. And it’s also, I want to go, but my family don’t want to go. And I can’t go because they don’t support me, because they think it’s snake oil.

Bill Gasiamis (18:18)

somebody hasn’t meditated before, thinks it’s woo woo and says, don’t worry about that stuff. What do you wanna be? Like a hippie or something? There’s those types of people who hang out in our world who do intervene with things that we’re curious about and we wanna kind of shift away from perhaps old habits to new habits, especially around alcohol as well. I found that people would go, aren’t you gonna have one drink?

Like what’s the point of going out if we can’t have a drink? It’s like, dude, like I’m a completely different version of myself. I’ve had a stroke, I can’t drink. But understanding how to deal with people like that is a bit of an issue. So then you’ve spoken to about 50 people who have either gone or not gone. Like have some people gone and contacted you and said it worked and some people gone and contacted you and said it hasn’t worked.

Andrew (19:40)

Bill Gasiamis (20:03)

Andrew (20:04)

Bill Gasiamis (20:22)

Andrew (20:35)

If you want to work something and exercise something and rehab part of your body, eventually it’s going to improve. Even if it’s only by a little bit and it’s really slow, it’s going to improve.

Bill Gasiamis (21:09)

Andrew (21:34)

And that just lifted like straight away and it didn’t come back. I still get cognitive fatigue now, but I really have to be doing stuff that that really taxes my brain to do it. And or I have to be really tired. But before I had the injection, I would get I would be on the verge of fatigue all the time.

So it wouldn’t take much to push me over into it. So that was gone. I had a ⁓ really nasty cramp in my right calf that never went away. That went away. That literally just dialed down as I was sitting there after the shot. the emotional control also came back.

Bill Gasiamis (22:42)

Andrew (22:43)

So when we flew down, because of my cognitive fatigue and sensory overload, I had eye mask, had noise-canceling headphones, had like, lorazepam in my pocket. Like, you know, I had all the, you know, all this stuff to, you know, save my senses. When we flew back, I didn’t need any of it, and that was 24 hours later. So I just stood in the airport like any other traveler. And that was…

Bill Gasiamis (23:26)

Andrew (23:28)

Bill Gasiamis (23:33)

Andrew (23:34)

Bill Gasiamis (23:52)

Andrew (23:57)

Bill Gasiamis (24:11)

Andrew (24:26)

Bill Gasiamis (24:50)

Andrew (24:57)

Bill Gasiamis (25:11)

Andrew (25:20)

Bill Gasiamis (25:41)

Andrew (25:51)

having the shot but ⁓ I don’t know I’ll see how my improvement goes.

Bill Gasiamis (26:20)

Andrew (26:22)

there’s a day and night difference. Whereas I had a hole in my brain after the stroke, all I had was a little bit of glial, called glial scar tissue. So scar tissue of the brain cells, a little white line in my brain. ⁓

Bill Gasiamis (27:08)

a round circle of what appeared to be offline or dead brain cells. Yeah, which, you know, it sounds like to me, it’s like where the inflammation was, that area they usually call, they often call, sometimes called the penumbra, which is the area that’s able to be rehabilitated, which is around the site of the stroke, which is offline but not dead, which HBOT targets, the right kind of,

Andrew (27:15)

Bill Gasiamis (27:38)

Andrew (27:47)

Bill Gasiamis (28:01)

Andrew (28:05)

Bill Gasiamis (28:07)

Andrew (28:10)

dead mess in there and they check every four years to make sure it hasn’t done anything naughty and It hasn’t so they actually said of this last scan look it hasn’t changed in the last 12 years, so no more scans

Bill Gasiamis (28:41)

Andrew (28:46)

Bill Gasiamis (28:47)

Andrew (28:54)

Bill Gasiamis (29:00)

Andrew (29:19)

Bill Gasiamis (29:31)

Andrew (29:43)

And for 10 years we thought that was anxiety. But what it was was that because my blood pressure wasn’t consistently high, I could go to the doctors and I could be normal. And then my other doctors didn’t have high blood pressure. It was not consistent. So I was just treated for anxiety and given a sort of a low dose blood pressure medication.

But actually what it was is both glands like over producing this hormone and that’s what gave me the stroke. So they’ve they’ve given me a hormone suppressant which helps, but they’ve been trying to.

to juggle multiple types of blood pressure medication to also bring my blood pressure down to a consistent normal. And so up until about three weeks ago, my blood pressure was still all over the place. And they had me on a really nasty cocktail at one point this year where I literally could not function. I couldn’t even get up. It suppressed my whole system so much.

that every time I stood my blood pressure would drop 50 points and I would almost pass out. So I was like a zombie. ⁓ It was just the combination of too many blood pressure medications at once. And finally, I’ve seen a different specialist and he changed my medication and I’ve just got one little pill at the minimum dose and it’s actually stabilized my blood pressure to normal.

Bill Gasiamis (30:51)

Righto, that’s good.

Andrew (31:18)

Bill Gasiamis (31:25)

Fantastic, what kind of stroke did it cause?

Andrew (31:31)

Bill Gasiamis (31:34)

there will be some people who will become all, what’s the word? Like they will, they’ll be all, this is snake oil stuff. And then there will be people who brag about it as being the best thing they’ve ever done, which seems to be kind of the camp that you’re in. I think, no, no, no, no. I mean, it’s one of the best things you’ve ever done with regards to your stroke recovery, right?

Andrew (32:18)

Yeah, yeah, and I found that when I got the results for the for the pesto test I really had to do a lot of soul searching because because I couldn’t explain to myself Why it seemed to have worked for me and yet the study was saying hey, doesn’t really have any effect and and I had to to

Bill Gasiamis (32:36)

Did you feel remorse or guilt about that? Wow, Wow.

Andrew (32:47)

Because why? I couldn’t explain how I had such a huge night and day difference. And that couldn’t be placebo and it’d be still working 18 months later.

Bill Gasiamis (33:08)

Andrew (33:15)

Bill Gasiamis (33:31)

I find it very fascinating that you would respond that way, that you would feel guilty and remorseful that it worked for you and the pesto child says it shouldn’t have.

Andrew (34:10)

Bill Gasiamis (34:14)

just wishing for the best for everybody.

Yeah, I can relate to that. Yeah.

Andrew (34:37)

Bill Gasiamis (34:41)

Andrew (35:00)

Bill Gasiamis (35:05)

Andrew (35:13)

Bill Gasiamis (35:17)

Yeah, I think that’s a great thing. I want to research that too, because I have known about it. I’ve understood it. I appreciated that I might be somebody who has had a leaky brain because of the strokes that I experienced, the brain surgery and all the stuff that I went through. And I know that if you restore the blood brain barrier, you can really decrease the fatigue that happens to people after a stroke. And you can make it impenetrable again to toxins.

and heavy metals and all that kind of stuff, which is often the cause of real chronic neurological fatigue, even in people who haven’t had a stroke, who are, quote unquote, normal. So that’s fascinating. I really appreciate your continued willingness to have conversations about this topic and sharing your story more than once with me. And then also being

being an ear to the people who are curious about whether or not they should go down this path and then kind of just like, you know, being honest about your story, sharing what happened to you, what you experienced and even your own reservations because I don’t think you have anything to, and you probably know this cognitively anyway, right? You don’t have anything to be guilty about or feel bad about or.

anything like that. But I understand why emotionally you might go down that path because you’re a guy that cares deeply for other people. You appreciate how hard it is for people to go through stroke and you wish them the same solution or other solutions that you had so that we don’t have to suffer. I know exactly what’s behind it.

Andrew (37:08)

Bill Gasiamis (37:12)

hopefully this continues the conversations to give people more things to think about. Leave us a comment in the YouTube comments section. Reach out via email. Yeah, drop us a comment. Reach out to us and we’d be happy to continue the conversation, support you, guide you. Just being here and I don’t know, help you make a more informed decision. That’s all we can do. We’re not going to suggest.

Andrew (37:35)

Bill Gasiamis (37:41)

Bill Gasiamis (37:46)

stroke survivors find these conversations. If you want to go deeper, you can grab my book at recoveryafterstroke.com slash book. And if you’d like to support the podcast and help keep it going, you can join us on Patreon at patreon.com slash recovery after stroke. Thanks again for being here. You’re not alone in this recovery journey and I’ll see you in the next episode.

The post Stroke etanercept injection 18 months on: Andrew’s update after the PESTO trial appeared first on Recovery After Stroke.

Ken Kerns didn’t just wake up from a stroke. He woke up from a 10-day medically induced coma after an AVM brain hemorrhage, facing a reality that would shake anyone’s identity: right-side paralysis, aphasia, and the exhausting work of rebuilding everyday life from scratch.

And then, because stroke recovery loves a twist, one of the nurses kept calling him Frank.

That moment might sound funny now, but in the early days of brain injury, it landed like a true identity crisis. Ken would later turn that experience into a book title: Anything But Frank—and into a bigger message that matters for every survivor and caregiver: recovery isn’t one problem to solve. It’s dozens. And you solve them one by one.

This episode covers the full story (AVM, coma, aphasia, purpose). But it also includes something many survivors are actively searching for: foot drop solutions after stroke without an AFO—specifically, a practical tool Ken found that helped reduce falls and made walking feel more natural again.

Ken’s stroke happened early in the COVID era, when work had shifted home and hospitals were under intense strain. He was preparing for a meeting when he went to the bathroom and collapsed. His wife, Carrie, couldn’t open the door—he’d fallen behind it. She called emergency services.

Ken has no memory of those moments. Like many survivors, he had to rebuild the story from what others told him.

What followed was terrifying uncertainty. A neurosurgeon reviewed imaging and initially feared a tumor (Ken had a history of kidney cancer years earlier). Carrie was allowed into the emergency room to say goodbye because it wasn’t clear Ken would survive surgery.

But in surgery, the cause became clear: an arteriovenous malformation (AVM). The surgeon removed it, and Ken was placed into a medically induced coma for 10 days.

When Ken woke, his deficits were immediate and brutal:

One of the most honest parts of Ken’s story is how confusing aphasia can feel from the inside. Ken described it like this: his cognition is there, answers are forming—yet the “path” to speech is obstructed.

“My brain works much faster than my mouth.”

“There used to be a direct path… and now that path is worn… covered by weeds.”

That metaphor matters because it reframes aphasia as a communication access issue—not a lack of intelligence.

Ken found a major turning point through a Minnesota-based communication group: Minnesota Connect Aphasia Now (MNCAN). Practicing weekly conversations (with support from a speech-language pathologist) rebuilt something more than words. It rebuilt confidence.

He went from relying on Carrie to order food or check in at airports… to speaking up again in real-world settings. And eventually, he didn’t just participate—he stepped into leadership and became president of the board.

If you’re living with aphasia, this is one of the most powerful “hidden wins” in recovery: you don’t have to wait until speech is perfect to start practicing in the world.

In the hospital, a nurse repeatedly called Ken “Frank.” It sounds like a paperwork mistake—but for someone fresh out of coma, it triggered fear and confusion: Did I die? Am I someone else? Who will I FaceTime?

When the iPad finally turned around and he saw Carrie, he cried—not from sadness, but relief.

Later, Ken’s siblings did what siblings do: they turned the story into a running joke. They called him Frank. Ken’s response became a line that carried him forward:

That phrase became the title of his book and a symbol of what recovery often is: reclaiming identity while your body and brain renegotiate who you are.

Ken also spoke candidly about emotional recovery. In rehab, he felt intense anger—then shifted into a daily question that gave him structure: “Guide my day. Show me the purpose.” Whether you share Ken’s faith or not, the takeaway is universal:

When recovery feels chaotic, survivors need a meaningful frame to keep going.

Foot drop is one of those stroke problems that seems “small” until it isn’t. It can quietly steal independence through trips, falls, and fear—especially on stairs, uneven ground, and (in Ken’s case) Minnesota snow and ice.

Ken described classic foot drop challenges:

He used an ankle-foot orthotic (AFO), which helped. But later, he discovered a product that—for him—became a workable AFO alternative: Cadence shoes.

Ken’s experience was specific and practical:

This is crucial: this isn’t “one weird trick.” It’s a tool that matched Ken’s exact pattern of movement, environment, and needs.

If you’re exploring foot drop solutions, here’s the smart way to use Ken’s story:

Ken also used another independence tool: a left-foot accelerator to return to driving while his right ankle remained immobile. That’s a reminder that “walking recovery” isn’t only rehab—it’s also smart adaptation.

Ken’s recovery wasn’t a straight line. It was many small wins, stacked over time. If you’re in the thick of it, consider this simple plan:

And if you’re a caregiver: the biggest gift is often helping your person keep experimenting—without pressure, without shame, and without rushing the timeline.

Ken’s “new way to walk” is a valuable segment—but the whole episode is the real promise: AVM stroke recovery, aphasia progress, identity rebuilding, and the meaning that can emerge after trauma.

If you want more stories like this (and practical tools survivors are actually using), you can also check out Bill’s book and support the podcast here:

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Ken woke from a 10-day coma after an AVM stroke, unable to speak or move his right side, then rebuilt his voice and his walking confidence for life.

Additional Resources:

The Transcript Will Be Available Soon…

The post Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence appeared first on Recovery After Stroke.

If you’ve spent any time in stroke recovery communities, you’ve probably seen the same pattern: a treatment gets talked about with real intensity, people share personal stories that pull you in, and suddenly you’re left trying to sort hope from hype from “maybe.” When the decision also involves significant cost, that uncertainty can feel even heavier.

That’s exactly why I recorded this episode: to help stroke survivors and their families understand the PESTO trial results in plain language without drama, without attacks, and without jumping to conclusions.

In this interview, Professor Vincent Thijs explains what the PESTO trial set out to test, why it was designed the way it was, and what the results can (and can’t) tell us about perispinal etanercept in stroke recovery.

If you’re a stroke survivor, you’re already doing something heroic: you’re living inside a recovery journey that demands patience, grit, and constant adjustment.

The challenge isn’t that you “don’t want to believe” in something. The challenge is that it’s genuinely hard to make an informed decision when:

My goal here isn’t to tell you what to do. It’s to help you think clearly, ask better questions, and understand what the best available evidence from this trial actually tested.

Professor Thijs explains that the PESTO trial was designed in response to strong community interest. Stroke survivors wanted to know whether the way perispinal etanercept is currently administered in some settings could be demonstrated to work under the standards used for medicines to become widely accepted as part of routine care.

So the researchers designed a randomized, placebo-controlled clinical trial. In this type of study:

In the PESTO trial, the focus was on stroke survivors with moderate to severe disability and reduced quality of life. The primary question was straightforward:

Does quality of life improve after one or two injections compared with placebo, over the measured timeframe?

One key detail Professor Thijs highlights is the design choice: the trial didn’t only target one issue, like pain or walking. It aimed to be more “pragmatic,” reflecting how treatment is used in real-world settings where people seek help for different post-stroke challenges (mobility, fatigue, speech, cognition, pain, and more).

That means the main outcome wasn’t “Did walking speed improve?” or “Did pain reduce?” It was broader:

This matters because your results can look different depending on what you measure. A trial targeting one symptom might see a signal that a broad quality-of-life measure doesn’t detect (and vice versa).

In Professor Thijs’ words, the trial did not show a difference in quality of life between the treatment and placebo groups at the measured time points:

That’s the central outcome.

But there’s another finding that grabbed my attention—and it’s one many listeners will find surprising.

Quote block (mid-article):

“We saw that 58% of the people also had that improvement [with placebo] and 53% had it with etanercept… our initial guess was very wrong.”

— Professor Vincent Thijs

A strong placebo response doesn’t mean “it was all in their heads.” It means that in a blinded clinical trial, people can improve for multiple reasons that aren’t specific to the drug itself, such as:

Professor Thijs describes how, during the blinded phase, participants reported improvements in a variety of areas (like sensation, vision, speech). The crucial point is: the team didn’t know who had a placebo or an active treatment at the time, which is exactly why blinding exists.

For you, the listener, this is a reminder of something empowering:

Personal stories can be real and meaningful—and still not answer the question of efficacy on their own.

One of the most important parts of this conversation is the desire to identify who might benefit most.

Professor Thijs explains that the team looked at subgroups (for example: age, sex, severity, diabetes, time since stroke). In this trial, they didn’t find a clear subgroup where the treatment stood out as reliably beneficial compared with placebo.

He also adds an important caveat: subgroup analysis is difficult, especially in trials that aren’t extremely large. So the absence of a clear “responder profile” here doesn’t automatically prove none exists—it means this trial didn’t reveal one.

Let’s keep this grounded and fair.

This interview is not about attacking any person, provider, or clinic. It’s not about shaming stroke survivors who tried something. It’s not even about telling you that you should or shouldn’t pursue a treatment.

It is about this:

If you’re considering any high-stakes treatment decision, here’s a neutral, practical way to move forward:

Is it pain? walking? fatigue? speech? cognition? daily function? quality of life?

A treatment might be studied for one outcome and discussed online for another.

Not “Does it work?” in general, but:

Talk with a qualified healthcare professional who understands your medical history, risk factors, and rehab plan. Ask about:

If you want the clearest explanation of the PESTO trial results—from the lead researcher himself—listen to the full episode with Professor Vincent Thijs.

And if you’d like to support the podcast (and help keep these conversations going for stroke survivors who need hope and clarity):

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Confused about perispinal etanercept after stroke? Prof Vincent Thijs explains the PESTO trial results clearly, calmly, and evidence-first.

More About Perispinal Etanercept:

Etanercept Stroke Recovery: Wesley Ray’s Relentless Comeback

Highlights:

00:00 Introduction and Overview of the PESTO Trial

Transcript:

Bill Gasiamis (00:00)

buys the book and even to those of you who don’t skip the ads. Every bit of that supports keep this podcast going. Now today’s episode is about the PESTO trial results and I’m interviewing Professor Vincent Theis. If you’ve ever felt confused by the conversation online about perisponal antenna sept, some people sharing positive experiences while others are feeling disappointed and plenty of strong opinions in between, this episode is designed to bring

clarity. We talk about what the PESTO trial set out to test, how the study was designed, what it found within the measured timeframes and what the results can and can’t tell us. Just a quick note, this conversation is educational and not medical advice. Always speak with a qualified health professional about your situation. All right, let’s get into it. Professor Vincent Dase, welcome to the podcast.

Vincent Thijs (01:24)

Bill Gasiamis (01:26)

the Etanercept injections and the lack of results. So today, the reason I reached out is because I wanted to get to the bottom of the findings of the PESTO trial. And I’m hoping that you can shed some light on that. The first question basically is, can you start by explaining in simple terms what it was that the PESTO trial set out to investigate?

Vincent Thijs (02:22)

and genders can be actually proven according to the standards that we use in the pharmaceutical industry to get it to become accepted as a standard of care treatment. For that, you need to do what we call a randomized controlled clinical trial, preferably two that show evidence that treatment

does what it’s set out to do. And that’s why with this background and the community pressuring the minister several years ago, Mr. Hunt at the time, to fund a trial that would help answer that question.

There was a call was set out to do this trial and several groups in Australia

applied and then an independent committee decided to award the trial to the PESTO study group. And then we tried to design this trial to give an answer. So it’s mostly about people that have moderate to severe disability after their stroke that have reduced quality of life. And

We wanted to know, does their quality of life improve when Etanercept is administered? And we wanted to test whether one or two injections were needed.

Because that’s what we heard from stroke survivors that from Australia and internationally that went over to the US. Well, this is how it’s done. You get one or two injections and there was a paper that had shown big effects with one injection. So that was the primary endpoint, but then we also looked at whether two injections could help. And when you design a trial, you have to make a decision, will we focus on people with.

pain after stroke, or will we look at people who have mobility issues or speech issues or cognitive issues? And we saw that current clinical practice actually was people with various impairments after stroke were accepted and received the treatment. And what would have been the advantage of doing say only mobility or only pain? Well, you can then look at the outcome of pain or mobility, does it improve?

Or is your cognition improved? But because we wanted to be pragmatic and we know that recruitment in clinical trials needs to reflect how is current practice. So we thought let’s put in all the people with moderate to severe disability, whatever their impairment after stroke and reduce quality of life. And then we looked at quality of life as an outcome rather than an individual

impairment. And so what we did then was to use the randomized technique and where it’s left up to the computer to decide what treatment a person will receive, the active Etanercept or a similar looking placebo, and then look at 28 days and we had to make a decision what makes sense 28 days, what is practical.

to see whether that injection then had improved quality of life. And then we did another injection again with a placebo or the active drug. And then after 28 days again, we looked again whether that had made a difference. So we have people that had received two times the placebo, one time the placebo, and one active injection. And then we have people that had received two active injections.

And then we were able to compare those and see whether they had made bigger improvements if you receive two injections versus one or zero. Unfortunately, we couldn’t show a difference in quality of life at 28 days. And we also couldn’t show an improvement at 56 days after people had two injections. But that was in a nutshell how we designed and the background of the study.

Bill Gasiamis (07:25)

Vincent Thijs (07:39)

Bill Gasiamis (07:54)

Vincent Thijs (07:59)

Recruitment was relatively slow. So we added this additional group of people later on after their stroke. that because many people, I’m five years, I’m six years after stroke. Why can’t I get the treatment? And you know, so we also wanted to expand the pool. And that’s also what happens in clinical practice. Current clinical practice, I don’t think the sites and

the US and they would refuse the patient six years or so. We just wanted to reflect the people that we see on the website going for this treatment.

Bill Gasiamis (09:01)

injection to 50 milligram injection.

Vincent Thijs (09:34)

Bill Gasiamis (09:49)

Vincent Thijs (10:00)

Bill Gasiamis (10:17)

Vincent Thijs (10:28)

Bill Gasiamis (10:43)

In the second half of this conversation, we get into the parts that really help you think clearly. What the trial results do and don’t mean, and why placebo responses matter in blinded research, and how to frame smarter questions before you commit time, money, or energy to any path. If you want to support the podcast and keep these episodes coming,

You can grab my book at recoveryafterstroke.com/book or join the Patreon at patreon.com/recoveryafterstroke All right, back to the episode.

Vincent Thijs (11:51)

So the variety of sources and then we have to determine eligibility that was mostly done either via an in-person visit or remotely via telehealth. We tried to get their medical information, what type of stroke they had. And then we also questioned whether they had this modified rank in scale, the disability they had, the impairments they had from their stroke. so then people came.

they were considered eligible, then we scheduled a visit and they would typically come in no overnight stay needed. It was a day procedure that was done. People were then receiving another questionnaire on the day itself to measure their quality of life and other measures like their fatigue levels and how much help they required, etc.

And then we proceeded with the injection, which was done. We had bought a special bed that was able to do the, the, the tilting that was required. So we set the people up, injected and then tilted the table. so, we received the drug. It was prepared independently by the pharmacist. So the pharmacist, they took the drug off the shelf or the made the placebo.

and they made sure it looked exactly alike. So then somebody from the trial team picked it up from the pharmacist. The pharmacist didn’t tell, of course, what it was. And then the administration happened. So the doctor who administered and the participant did not know what they received. So after the procedure, they were left like this for four minutes. And then after four minutes, people could sit up again. And we waited about half an hour.

then we asked them how they were doing, whether there were any adverse reactions, ⁓ and ⁓ then after that half an hour of observation people could go back to their habitual situation. ⁓ it’s a very simple ⁓ procedure to do.

Bill Gasiamis (14:35)

Vincent Thijs (14:40)

the treatment team to be paid, et cetera, and that ran out. So we had to stop at a certain time.

Bill Gasiamis (15:13)

Vincent Thijs (15:23)

Bill Gasiamis (15:32)

Vincent Thijs (15:42)

would improve with the placebo based on an earlier study. And then we had to make a guess because nobody had done this type of study on what Etanosap would provide. But reading the report that was published several years ago now, where 90 % of the people reported improvement in their impairments, we thought, well,

Let’s not go for 90%, but a 30 % improvement.

And so that was based on that we needed 168 people to participate in the trial.

So that was what we call the pre-planned sample size estimation, which is a guess.

When we stopped at 126 participants, actually we saw that the results were very different. There was not that 11 % actually in the placebo arm. saw that 58 % of the people also had that improvement and 53 % had it with ethanosab. So our initial guess was very wrong based on

some statistical advanced statistical techniques we have. We have quite a lot of power to estimate whether there was a difference. So I think the trial can provide us an answer. It’s large enough to give us an answer about this particular question. Is current clinical practice in these people with this range after their stroke, does it improve?

quality of life after a month or after two months. I’m not speaking about early improvement, I’m not speaking about six months down the line. We only can decide what we see in this study.

Bill Gasiamis (18:05)

Vincent Thijs (18:34)

Some people had improvement in their speech. there were, we, we observed these things, but we didn’t know whether they were active or placebo. And then surprisingly we had some people in whom we thought, they must have had active drug that turned out to have the placebo, but that’s years after, right? Because it takes a little bit of time to accumulate a sufficient number of patients. And we were only reporting and breaking the blind when the trial was finished.

because otherwise you may be biased in all your analysis, et cetera. You don’t want to do that. So you wait until the end of the study to break the blind. And that’s very frustrating for the participants because there were many people that said, I must have had the placebo because it didn’t do anything for me. And there were other people that were, and some people like that, they said, I still want to go to the US.

Bill Gasiamis (19:37)

Vincent Thijs (19:59)

the participants. And then there were some people that were very surprised that they had received the active drug. I remember one person vividly who said, you have to tell me now because I’m going. And then I said, hold off, hold off. And then we told them you had twice the active drug. And so they decided not to go anymore. So you see how

From a clinical trial perspective, it’s very important to remain very objective and not being able to see what people have received. From a humane level, of course, I understand it was very important to these people.

Bill Gasiamis (21:02)

Vincent Thijs (21:26)

Bill Gasiamis (21:35)

Vincent Thijs (21:36)

Bill Gasiamis (21:38)

Vincent Thijs (21:40)

often that, and I must tell you, often those were relatively little things that seemed to improve both with the placebo and in the active group. And you see that there are changes in quality of life that people have reported, but it happens as well with the placebo.

Bill Gasiamis (21:58)

Vincent Thijs (22:24)

reimbursed on the PBS. You need to have some trials that have been done such as PESTO. We do different trial phases. One would be a phase two trial and a phase three trial. So phase one is typically in people just to assess the safety and some dosages usually in healthy people. And then a phase two is safety amongst stroke survivors.

and preliminary efficacy. And that’s where PESTO was what we call a phase two B trial. And then a phase three trial would then be a trial in many more participants based usually on the results of a phase two B trial. And then usually when you have a phase three trial and it’s convincing and the authorities may approve such a trial.

Bill Gasiamis (23:46)

Vincent Thijs (23:56)

After stroke or maybe within a year after stroke. I mean, there are other possibilities, but at the moment, current clinical practice type trials, I don’t think there’s enough evidence to move forward with that.

Bill Gasiamis (24:43)

Vincent Thijs (24:51)

Bill Gasiamis (25:15)

Vincent Thijs (25:25)

Bill Gasiamis (25:45)

I think one of the challenges with the path of administering a TANACEP to stroke survivors is that there seems to be a missing step. And the step to me is determining whether or not somebody is a candidate for a TANACEP. perhaps if we knew more about the stroke survivor, what was actually happening in their particular brain, and we were able to determine some similarities between the people who have had a positive result and we developed a method, then that would make it a lot easier.

to say, well, I’m a stroke survivor. I’d like to have a TANACYPT and then go through a process of determining whether or not I was a candidate rather than just guessing whether I’m a candidate or not and then having to pay money to find out whether in fact I was a candidate.

Vincent Thijs (26:33)

diabetes, are you early after your stroke or later? That one to five versus six to 15 category. And we could not identify a group in whom the the drug worked particularly well. Now there’s a caveat when you do a clinical trial, it’s really hard to look at subgroups, especially if your trial is relatively small and the PESTO trial is relatively small. So you have to take this with a grain of salt, but it was nothing really promising.

that we could identify. So probably you need other markers. If you believe in Etanercept as a drug, you would possibly need to look at what are the levels of TNF alpha, the drug, the molecule that actually is targeted. Unfortunately, there’s nothing like readily available to do that. Could it be that people with a…

a stroke in a particular location that would work particularly more than in others, but we don’t have any real way at the moment to do that.

Bill Gasiamis (28:08)

Vincent Thijs (28:21)

go against the natural defense that we have to protect the brain against substances that could potentially be harmful for the brain or that have a large size. And the Tandacep we know has a large size would not cross the blood-brain barrier. So it doesn’t reach the brain. And many people look at it with relative skepticism that it actually enters the brain.

Bill Gasiamis (29:18)

if there’s any TNF alpha, if inflammation is the issue and it cannot resolve it one way or another. So for some people perhaps it can’t resolve it. Now, I don’t understand about Etanercept a lot. I don’t understand exactly how the molecule works, et cetera. But if it was injected into a blood vessel, is that not something that can occur? And if it was, if it can occur, would that then cross the blood brain barrier?

Vincent Thijs (30:15)

Bill Gasiamis (30:17)

Okay, so a lumbar puncture is probably riskier than…

Vincent Thijs (30:44)

Bill Gasiamis (30:58)

positive results with Etanercept. The challenge is getting interviews with stroke survivors who have had negative results with Etanercept. That is something I haven’t been able to do. So if somebody happens to be watching and listening to this and they have had the Etanercept shots and they didn’t get positive results, please reach out so that we can share a balanced story of what’s happening out there in the community. Would there be a reason for the community to perhaps

begin again to lobby a government or a minister of a government to look at perisponinal tenosept and study it in a different way, like administration via a lumbar puncture.

Vincent Thijs (32:08)

The theory is that it persists for years, but if you look at the actual experiments that have been done, it’s really hard to study in humans because we don’t have good tests. But if you look in animals, it’s also hard to do long-term studies in animals, but nobody has really proven that conclusively that there is still after the stroke causes a scar, that process is still really active.

Is TNF-alpha years after a stroke still present? Yes, it’s present because we use TNF as a transmitter in the brain or a chemical in the brain, but is it still worth reducing its activity? That’s probably, I think, a bigger question that science needs to answer is to understand that all inflammation piece and the time after stroke that it persists in my

Bill Gasiamis (33:35)

wouldn’t get a result even if it was able to cross the blood-brain barrier because the damage is done and that’s the challenge with the brain is once it’s damaged restoring the damaged part is not possible.

Vincent Thijs (34:15)

Bill Gasiamis (34:28)

Well, my final question then is, are you planning on exploring inflammation and recovery after stroke with any work that you’re doing in the future? Is there any more of this type of work being done?

Vincent Thijs (34:46)

looking at young people that have had a stroke up to age 55 and we’re taking them into the scanner. We will do a PET scan that’s looking at inflammation. We’re taking their bloods and looking at markers of inflammation and see how that relates to fatigue after stroke. This is between the first month and the sixth month after stroke.

That will give us a little bit of timeline of inflammation after stroke. It will give us some information about fatigue, which is very common, but I have no plans at the moment to look at ethanocephaly.

Bill Gasiamis (35:53)

a qualified healthcare professional who knows your situation. If this episode helped you, please do a couple of things. Subscribe on YouTube or follow the podcast on Spotify or Apple. Leave a review if you can. It really helps more stroke survivors find the show. And if you’ve had an experience you’re willing to share respectfully, positive, negative or mixed, add a comment. Those real-world perspectives help community feel less alone.

And if you’d like to support the podcast and keep it going, my book is at recoveryafterstroke.com/book. And you can join the Patreon at patreon.com/recoveryafterstroke. Thanks for being here with me. And remember you’re not alone in this recovery journey.

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 Gassiamus.

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. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator.

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The post PESTO Trial Results (Etanercept After Stroke) | Interview with Professor Vincent Thijs appeared first on Recovery After Stroke.

After a stroke, recovery doesn’t end when rehab does. For many survivors, that’s when confusion begins.

Fatigue, brain fog, limited appointment time, and conflicting advice make it incredibly hard to know what actually helps. And while research is advancing rapidly, most survivors are left trying to piece together answers from podcasts, Facebook groups, and late-night Google searches.

That’s why this conversation with Jessica Dove London, founder of turnto.ai, matters.

Stroke survivors aren’t lacking motivation. They’re drowning in disconnected information — and often too exhausted to process it.

Bill shares how, after stroke and brain surgery, even short bursts of research felt impossible. Jessica explains how parents and patients are expected to become full-time researchers — on top of surviving life-changing diagnoses.

Doctors care deeply. But no clinician can keep up with thousands of new stroke-related publications every week.

This gap leaves survivors feeling dismissed — not because professionals don’t care, but because systems aren’t built for rapid knowledge sharing.

“You shouldn’t have to rely on luck or Facebook groups to find something that could change your recovery.”

turnto.ai doesn’t replace doctors. It reduces the cognitive load on survivors.

Jessica explains how the platform:

For survivors managing fatigue, this alone is transformative.

Bill demonstrates how Tunrto.ai can instantly surface:

Instead of hours of searching, survivors gain clarity — and better conversations with their care teams.

Hope doesn’t come from miracle cures.

Tunrto.ai doesn’t promise answers.

If you’re a stroke survivor who feels lost, overwhelmed, or unsure where to look next, tools like turnto.ai represent a new way forward.

Learn more at turnto.ai

You’re not alone — and better answers are closer than you think.

Footer disclaimer:

After stroke, finding answers shouldn’t depend on luck. Discover how AI is changing stroke recovery with Jessica Dove London.

Turnto.ai

Highlights:

00:00 Introduction to the Journey

Transcript:

who truly understand what this journey is like. After a stroke, finding reliable up-to-date information is exhausting. You’re dealing with fatigue, brain fog, limited time, and often very little guidance beyond rehab. In today’s episode, you’re going to hear from Jessica Dove London, my new hero, the founder of Turnto.ai, a tool designed to help people like us find relevant stroke recovery information much

faster with less effort and far less energy delivered straight into your email inbox.

This is not a sponsored episode, but it is an episode about a solution I genuinely believe can change how stroke survivors find answers. Let’s get into it.

Bill Gasiamis (01:13)

Jessica Dove London (01:16)

Bill Gasiamis (01:17)

I’ve got no issue with that. If they’re relevant, I love sending new information to people. And one of the biggest challenges is determining what’s going to be the most helpful thing. How can I get things out that are not just another thing to talk about for the sake of talking about it? And then I didn’t respond to your email because it kind of goes down to the bottom of the list when all the other new ones come in and I’ll get to that. get to that. And then I saw a link in my

I comment on my LinkedIn and I thought, okay, this is familiar. I’ve seen this before. Let me check it out. And then I checked it out and thought, what an idiot. Why haven’t I contacted this person back quicker? This product is amazing. But before we talk about turnto.ai, give me a little bit of a background. I just want to get a sense of how it is that somebody comes up with the idea. I know what I’m going to do. I’m going to create a product that brings information to people.

more rapidly than ever before so that they can decrease the amount of time it takes to learn new and amazing things that are coming up about their condition.

Jessica Dove London (02:50)

from my lived experience. So when my son was 18 months old, he was diagnosed with a rare type of cerebral palsy, which is a little bit similar to Parkinson’s in his rare type. And when I went along, when he got diagnosed, I went along to his appointment, we knew he had something and I took a big research paper along systematic review and the doctor said, nothing you can do to help him. There’s no medication, surgery. She even told me, don’t bother reading those papers. And I just,

went on this journey that maybe a lot of people listening relate to when you are given something or you’re recovering, we have this huge life change of wondering what can I do to improve my son’s quality of life? And this real question, like, can I do anything? He’s amazing as he is, but we want to unlock the whole world for him. So I just went on this journey for years, finding treatments for him. And we just kept finding treatments and some were incredibly life impacting. And almost all of them were in the medical literature.

I just had to decipher them. I traveled the world, how did every world leader ended up studying neuroscience? We, we had a big YouTube channel where we shared our stories and I went to a huge conference with all these academics and this one world leader got up on the stage and she shared these incredible things coming for cerebral palsy, which actually is some relevance for stroke because there’s a lot of things that are free. They’re, sort of based on neuroplasticity. They’re very accessible. And I actually put my hand up and said, I shouldn’t have to fly around the world.

to learn about cutting edge things that could help my son or help people right now. you know, I guess I just live this experience that think many people do where all the cutting edge information can be all over the place. It can live in these research papers. It can live in the patient community. It can live in those incredible healthcare providers, but you have to sign or in clinical trials, you know, you don’t know, you have to piece it all together and then work out what’s relevant for me.

because you know, you could be sitting in a Facebook group, you could be listening to podcasts like this, but there’s so much time that is wasted and opportunity that is wasted while you’re trying to work out all these things. And for most people, you don’t have the world leading best healthcare providing team. Who knows everything doing that work for you. You have to do it on your own. So yeah, just live that problem of trying to find the cutting edge thing to help my son and you know,

For two years, it took me two years, we did find a whole lot of things.

Bill Gasiamis (05:40)

⁓ feeling terrible most of the time. And then, ⁓ my gosh, I’m feeling good right now. And then it’s a priority. Like what do I do now that I’m feeling good for five minutes or 10 minutes or an hour? And for me, I, I was very keen to kind of, understand what I can do to support myself. And I knew for certain there was stuff that doctors weren’t delivering when able to deliver, didn’t know about, weren’t telling me that if I did the research that, and I found that I could implement something that was

easy for me to implement. for me, just perfect example would be nutrition. But in my conversations with doctors, when I asked them about, this something I can stop eating or start eating to help my brain? There was no information out. There’s probably nothing that wouldn’t matter. Just go about the treatment that we’re offering. And then as a mom or a parent, let’s say as a parent who has a child who has needs beyond the

quote unquote normal. It’s like, I’ve got to do all these extra things as a parent for my child. And I’ve got to have my life. I’ve got to do work and do all the things that parents do other than just parenting. And then somehow in there, I’ve got to find a flight to a conference to the other side of the world to hear a researcher maybe, and it’s only like a maybe share something that’ll be life-changing and supportive. And that’s kind of…

where I was at, was in the same place. And I thought, what I’ll do is I’ll create a conversation so that people can come to me. We can chat about it amongst other things, share stories. But then hopefully somebody on my YouTube channel says, do you know about this? And then that happened. And then that was a problem as well, because it’s like, I don’t know about this. I don’t even know where to begin to have a conversation about that with you. And if I needed to…

do the research on something that I was asked about will take ages. Now, one of the questions I had recently was, you know about methylene blue? And it’s this ridiculously kind of current topic about improving mitochondrial function for people. And as a result of that, people are finding out how you can take that and they’re taking it, which I wouldn’t recommend. And, and now I don’t…

check it out, tell me what you think. And then I did. And I was able to see the power of being able to have the research just sent to me in my inbox because I asked the AI to do it and it does it on a regular basis. And in a moment we’ll share about it. But then tell me a little bit about that transition for you from I’m traveling all over the world to nah, stuff that. I’m gonna do that from.

my office in Brisbane, in Australia. I’m not going to travel the whole world to find out this information. It’s not efficient enough. How do you move from mum with a problem to mum with a massive solution?

Jessica Dove London (09:31)

think one of the biggest challenges is often at the beginning of your journey, you don’t have the context. You don’t know the map that you’re even looking at. All you know is the impact it’s having immediately and the potential future impact and all those really hard things that you’re facing. so probably for those first five years, I was just pulling everything together messily and someone’s trying things, low risk things, all these different things, trying to get the best people to give us that advice.

However, you know, after those five years, I went to that REITs big conference and actually initially got an AI grant to do a research project, an AI research project. And I had a really good friend get lung cancer, stage four lung cancer and a good friend get MS. And they just had the same problem that I was having. And so I just knew there was something here. And so initially what we did is we actually just brought all the treatments that exist for cerebral palsy in one place. And there were over 220 treatments and most patient knew about five to 10. And these are,

science backed different protocol treatments people are doing and having some impact on. They having some evidence of things that are working. And so the problem is just really wild because you again, you’re told, I’ll just try these few things, but there’s actually legitimate scientific leading people with all these other ideas and some of it’s really working. So I just, I initially I did that. And then when my kids started school,

⁓ I decided to start a tech platform because I saw this as a really huge problem, but I knew I needed a world-class engineering team because I knew AI had to be part of this. And this was before all the LLM, all the open AI. don’t know if people’s familiar with AI, familiarity with AI is. Before all of this amazing sort of last few years, I was using sort of different, more sort of machine learning to try and just bring the data in and categorize it.

but really just trying to make it accessible for people.

Bill Gasiamis (11:51)

exact problem is why this episode matters. What Jessica has built with turnto.ai is a way to reduce the mental and physical effort it takes to stay informed.

after a stroke. Instead of searching endlessly, relevant information is found for you based on where you are in your recovery and sent straight to your inbox. There’s a listener discount available which you’ll find in the show notes and I’ve also created a page with more details at recoveryafterstroke.com/turnto that’s recoveryafterstroke.com/turnto

But stay around, listen to the rest of this episode before you go and check out recoveryafterstroke.com/turnto, to get the discount code.

All right, let’s get back to the conversation.

Jessica Dove London (12:55)

You know, I think one of the unfortunate things is, is amazing groups out there, amazing orgs out there, but they often are technology specialists. So I don’t build things that can continue to be relevant. They often make really high quality resources and then the resources are actually not relevant even for you doing a search. You know, you do a search and then what happens in a month when there’s something new that’s come out about that. So yeah, we’re on that journey and probably the cornerstone of what we’ve built is this belief we have that all the voices matter.

And so research matters, patient experience matter, leading professionals, experts matter. And actually they sometimes can hold different pieces of the puzzle. probably unlike other tools that you’ll see out there and when we show what we’ve built and how we build it, that’s the key thing. The other thing we believe is that new information matters and it’s too much work for one person, let alone a doctor, a specialist can’t even stay up to date on the disease because

know, stroke is actually got an unbelievable amount of things that are created every week. can be over 2000 new things every week in stroke that are being published from expert interviews to new research to clinical trials to patient discussions to incredible events. It’s just wild. Like there’s actually so much incredible stuff happening. But you can’t find it all and you can’t read it all.

Bill Gasiamis (14:39)

It was cool because I’m not interested in everything that stroke has to offer me. The research has taught me, but I’m interested in certain things and I’m interested on things specifically that my followers and listeners on my podcast want to know about, you know, so I’d love to be able to bring that to them. So then I had a bit of a play and then we’re going to move to that. I’m going to share the screen in a minute and we’ll talk about that actual screen and the solution, but there is an onboarding process, which we’re not going to.

show today but can we talk about it a little bit just to give people a sense of how people they’ll come across turn to and then they’ll go okay ⁓ i want to start and then i want to make sure i get information information for just the stuff that i’m interested in how does the onboarding work

Jessica Dove London (15:21)

Yeah, I guess this is again, thing of like, you know, we’ve built a tool that you’re about to see where we want to keep you up to date, read every single new thing and just give you a handful of things. So how do we do that? And so the way we designed this is to find out what’s on top right now. If you’ve just had a stroke, you’re in a very different stage to one year post, two year post, five year post. the reality is of a patient journey is

Bill Gasiamis (15:40)

Jessica Dove London (16:02)

Sometimes some information is less relevant for certain groups than others. I’m in a cerebral palsy space, your subtype really matters because it’s actually completely different neurology. And so you might find this incredible breakthrough and it just not be relevant for the subtype, which is actually the case for my son. My son has a very rare subtype, which makes like, you know, anything published on his subtype is like gold because you’re like, wow, a new sort of thing has come out. Yeah. So what we’ve done is,

made the onboarding about what are you facing this week with your stroke recovery? You know, what is the symptom you’re worried about? And the thing about the tool is, you know, that week it’ll, it’ll go and read the thousands of new things and it will then match you according to what’s on top for you. And it’ll also go and do specific searches on your location. So if you’re living in Sydney, you’re living in anyway, Los Angeles, London, it’ll search for that week for stroke.

what is happening in that city. And the reason that’s so helpful sometimes is there are groups, there’s new clinical trials, there’s so many things that are all these incredible people are putting on webinars, like online support, online educational things. So we match you to all of those things every single week. But yeah, really it’s what are you doing with dealing with right now? And then if you get to Sunday, cause that’s when we send our update out and you’ve got something new that’s come up, you just can talk or type and say,

hey, I’m not interested, I’m now interested in keto and I’m interested in this and it will just make you, it’ll create new priorities. Cause that’s the real journey of living with a competition.

Bill Gasiamis (18:05)

Jessica Dove London (18:25)

Exactly.

Bill Gasiamis (18:35)

Jessica Dove London (18:38)

that’s right. The funny thing about health information is though, cause one of the things we’ve built, if let’s say you’ve tried something though, and there has been new research that’s come out about post impact, you may get that in your update because, know, let’s say you did a surgery or you did sort of some sort of intervention there. Sometimes studies coming out about five years post that intervention. And actually that’s really useful for you because what if it, this new potential thing you should be testing for? I think the key to what we,

Have learned from building these tools is you don’t actually know what you don’t know. And like, I think most people here have had that experience of sitting in a Facebook group, listening to your podcast. You learn something new and you go, ⁓ I wish I knew this. ⁓ it feels like luck. And I think that is just a really challenging thing because your health is so much more important than luck, but it can feel like that. You know, I can literally remember when I’ve been in a Facebook group and someone first mentioned this surgery that we ended up doing.

took us a year to make the decision, but it was like, ⁓ my goodness, what is this they’re talking about? And then I went to my, our surgeon and the surgeon was very, very dismissive even though there was huge body of literature behind this particular intervention. So then I had to find another specialist and so it begins.

Bill Gasiamis (19:53)

That’s a great thing too, as well. Like if you could be facing roadblocks that are based on other people and that, and then if you don’t have like some kind of ammunition to take to them to say, but you know, how about this? That’s one of the challenges. Cause then, you know, they kind of say, well, there’s no data. I haven’t seen it. If I haven’t seen, I’m a doctor. Like, you know, what do you know? How are you going to be the perfect person that makes the decision?

gatekeepers of information bother the hell out of me. Like I hate people who have information and think that because they have it, that they sort of hold the key to how that information is disseminated. But then also people who discourage people from doing searches on what may help them, you know, this is my life, it’s my condition. I wanna be able to find things to help me to make my life better. So I don’t have to be in the hospital system so I can go back to life.

so I can improve things. So luck is not part of the equation. If I didn’t jump into that Facebook group today and didn’t see that post, I would have missed it for years maybe.

Jessica Dove London (20:56)

popular treatment at the time, had no research behind it in the cerebral palsy space, but very low risk. It was like an intensive physio type protocol. And I actually shared this with a whole bunch of academics and a world leader came up to me and said, she’s now going to study this treatment. Because again, you know, are not academics sitting in Facebook groups.

or they’re not always, know, they’re not, you know, it takes years for these things to even begin to be getting researched. However, at the same time, are, like research has been, can be very, very helpful and it can also, you know, there are definitely a variety of things out there. Some things are snake oil, some things are, some things can look like snake oil and actually be the next best thing because there’s actually a sign, you know, reason why it’s working or we don’t know why it’s working. It is very hard to decide for all of this. Yeah.

Bill Gasiamis (22:17)

Jessica Dove London (22:19)

Bill Gasiamis (22:26)

It came to me, it said, these are some things that we found for you. And, ⁓ it said it found 18 things. It gave me this, ⁓ bar chart thingy, me jiggy here, which is not a bar chart. It’s actually an audio file telling me what it found. ⁓ and it gave me top insights, six things, and it told me one thing that was near me now, just for context.

said, I’m in Australia, in Melbourne, but I said I was in New York, New York. Okay. Just so that I can kind of get a sense of what happens when people from ⁓ other places in the world do a search. I kind of have an idea that if I had done the same thing, what type of results I would have got here. But the reason I did that is because I believe it or not, stroke survivors have reached out to me from New York and said, do I know any stroke survivors in New York? I’m in Australia, in Melbourne. Like technically that answer should be no.

but I know heaps of people in other areas. But what I don’t know is what’s happening in those other areas. And what Tony found was ⁓ groups, meetups or something along those lines that were happening in New York for people. So I found that really interesting. So I could immediately do that search and get that

I click near you, all right, I’m not in New York guys, but if I click near you, look what it found. Hybrid event stroke support groups at Mount Sinai, Sinai, I know I butchered that, but it’s.

probably an event that is happening ⁓ in that area. Union Square, I think I know what that is. I think that is in Manhattan. And then it gives its thoughts. It says, this group could help you connect with survivors for emotional regulation and post-traumatic growth. Like, what? That was like a few minutes of searching immediately now. If I had even moved.

to New York, it was a brand new place where I’m living and I want to connect with people, I’ve automatically found that. mean, that is fantastic.

Jessica Dove London (24:58)

Bill Gasiamis (25:06)

Yeah.

Jessica Dove London (25:28)

Bill Gasiamis (25:30)

Yeah.

Yeah, I love it. this one, this week’s daily update. So I’ve had a few of those updates and I’ve clicked a lot of them. And they, as I was going through my mind a few weeks after I logged in for the first time, I would then put in a new search. And then the most recent email that I got or update that I got was this one here. And

It has found 17 new things for me and the top insights have been updated because one of the additional searches that I put in later after I did the onboarding was about hand spasticity. And then also I did, and look at this, I did a podcast with,

a stroke survivor called Jonathan and it has already found it and brought that to my attention as if I didn’t know about it. And Jonathan Aravello shares his story. That’s an interview that I did with a stroke survivor a little while ago and it already knows that it’s there. And then if you scroll down, I found if you scroll down, you just go through other things that people are talking about. Vivastim is a new product that

stroke survivors are talking about because it’s an implantable and it attaches to autonomic, to the vagus nerve and somehow it supports people to improve function and it helps with neuroplasticity and all that kind of stuff. I’m just stunned by all the information that came to me and…

And I had a question this week in my YouTube channel. Let me tell you what it is. And let’s see if we can just do a search and find some information on that product. STC30 stem cell treatment. I’ve got no idea where to start. How would I answer that question for the person? They asked me a lovely question. What can you say about the effectiveness of STC30 stem cell treatment? So I’m getting asked like I’m an expert in these areas.

I don’t mind, but that’s the kind of information that people are looking for. They’re going, how do I find information about that thing when nobody else out there will talk to me about it? They’re kind of like doing a Hail Mary shot. They’re going, I’m going to ask this guy on the podcast, maybe he knows about stem cells. Who would know about that? But check this out. If I do ask a question, if I say,tell me.

about ST.

C 30.

stem cells. I’m going to generate.

And I love this part about it too, the searching and the thinking that it does. ⁓ What specific outcomes or improvements are you hoping to achieve? And I’ll just say. ⁓

Less brain fatigue.

That’s brain fatigue.

Jessica Dove London (28:52)

actually you can make spelling mistakes.

Bill Gasiamis (28:56)

Jessica Dove London (28:58)

Bill Gasiamis (29:00)

Jessica Dove London (29:27)

I mean, it’s trying to look for that answer and then it’s trying to match you to it. I think that’s just, it hasn’t actually restarted. It’s just.

Bill Gasiamis (30:05)

Jessica Dove London (30:09)

Bill Gasiamis (30:15)

And then here we go, ST stem cells is marketed as a supplement that claims to support cellular repair and regeneration, but its efficacy and safety are not well established in clinical research. So that’s like a little bit of ⁓ initial information. And then here you go, the patient view, which is so important in this, isn’t it? It’s important to find people who may have had a procedure and have something to share about it. That’s so, so helpful.

And then what the research says, how many research papers has it got here? Wow. Look at that one, two, three, four, five, six, seven already research papers. And they’ll all have links to other research papers that, you know, made those ⁓ studies that sort of give those studies the initial information to get the ball rolling on them. And then,

systemic review here which check

Jessica Dove London (31:15)

actually even a full paper on that. I actually don’t know this topic, obviously, but if you go up to the summary, might even say, sometimes you might learn, there’s actually not specific papers on this. However, here are papers that are relevant. you click show style. It’s on the research here. you click post. So if you go down to what research says.

Bill Gasiamis (31:31)

Jessica Dove London (31:37)

Bill Gasiamis (32:01)

Jessica Dove London (32:07)

Bill Gasiamis (32:19)

And look, here we go again. It’s found my podcast two times here. ⁓ that is brilliant. love it. And then I did this. went, I think I went back and then I asked the question here because I had like a thing that popped up in my brain today. Right. Somebody kind of said, Hey, have you heard about that? And, ⁓ somebody did that. And, ⁓ and then I just can go.

immediately into that and go okay where is it i’m just trying to search on my

Jessica Dove London (33:05)

searching, guess the thing that we built with our weekly tool as well, so let’s say you really want to learn about STC 30. I think that’s it’s called. You can just put that in your weekly, your profile, and every week our tool will look for that specific topic because that’s the other thing. So if you click strengthen my profile, can you see that purple box down at the bottom? Yep. If you click on strength, you click on that, you can just say, you can type anything new in here and it’s going to then keep searching it.

Bill Gasiamis (33:20)

⁓ yeah?

There you go, there’s all of my data that I put in at the beginning, New York, New York, early 50s age group, approximately 13 years post stroke, all the topics that I was interested in. And where would I put that? Would I put that here, add new?

Jessica Dove London (33:34)

Yeah, yeah. And if you start, then we’ll know that that’s at the top. Yeah. But you can, to be act, to actually be honest, you can actually, if you go back, I’ll show you an easier way. So at the end of every weekly update, there’s a huge box that just says, me anything new. but if you go back, I’ll show you something on the dashboard as well. Yep. So if you see, do you see want to do a deep dive, see how this says update me the top on the right.

Bill Gasiamis (33:52)

dashboard.

Jessica Dove London (34:13)

Bill Gasiamis (34:13)

⁓ okay. Next question I had a day ago, somebody wanted to know about red light therapy. So why don’t I do that? If I press that and then do that, right? Click this button here. Is that the one?

Jessica Dove London (34:31)

you can talk or type, whatever works for you.

Bill Gasiamis (34:34)

Jessica Dove London (34:36)

see if it works with the podcast, whether it’s taken them. Yeah, I think it’s not working just because you’re doing a podcast, because you’re using the speaker.

Bill Gasiamis (34:39)

⁓ no.

Okay,

so I’ll type I’ll just say ⁓ red light therapy.

Jessica Dove London (34:53)

Bill Gasiamis (34:58)

Jessica Dove London (34:59)

yep. So now it’s actually just added it to your health profile whenever you want to know. So for your next Sunday’s update, you’re now going to have red light therapy in there. But yeah, but the reason we put the voice box is it’s actually sometimes useful to talk a bit more like, Hey, I’m thinking about doing red light therapy. I’m really worried about this, this, this, just actually giving more context. Cause at the of the day, if there’s a thousand new things a week in stroke, you know, this is just a matter of how do you, how does

Bill Gasiamis (35:11)

Jessica Dove London (35:28)

Bill Gasiamis (35:32)

Jessica Dove London (35:41)

Bill Gasiamis (36:01)

put that in there, came up with a whole bunch of information again. This is just like the most obscure thing that everyone’s talking about now. And unfortunately, people are taking Methylene Blue ⁓ without knowing whether or not they’re a candidate. And when they request information from me, I want to be able to give them accurate information and don’t be like that.

person who holds onto the data and then doesn’t release it. But I’m confident it could say if you’re somebody considering taking Methylene Blue, do not take Methylene Blue. is so, ⁓ it’s such a nuanced bit of like tool. It’s such a nuanced tool and you need to know like the most amazing people in that space and there’s probably only two of them in the world. So it’s like great that everyone’s talking about it.

But I feel really confident now about having the information in front of me to share with stroke survivors. And I would not have felt like that if this tool did not exist.

Jessica Dove London (37:34)

Bill Gasiamis (37:40)

you

Jessica Dove London (38:00)

So I told the tool, I’m worried about my son having osteoporosis. I went to the doctor’s consultant and the consultant said, don’t worry, we don’t need to scan. He said we’re going try and them. But the doctor said, don’t worry. And then the week later, my son got very bad knee pain. We ended up doing an x-ray, which showed potential osteoporosis. I pushed and we got a dextrose. And

doctor rings me and he says, yes, your son has osteoporosis. And I said, what can we do to treat this? And he actually told me.

we wait for children to break their bones when they have cerebral palsy. Now, if you’re a wheelchair user and you break a bone, that could be a year of rehab for your life. Now I’d put this into the tool and in the period of two to three weeks, it had found me two papers studying children with osteoporosis with cerebral palsy and an expert interview. I said to the doctor, why are we not testing his calcium? Why are we not looking at his vitamin D? And the doctor said, you’re right. We need to test those levels. Now like,

One, the reality is that consultant just can’t stay to date. Like I actually understand he’s busy. He’s actually serving lots of different conditions. And so like my passion and my hope is that we can do that work for people. because I have organized my son to get these blood tests now because we’re being proactive. Cause I don’t want him to break, break his bones. You know, I care more than anybody. He, know, it’s quality of life. And also when you have a label like cerebral palsy or stroke,

Sometimes things can be disregarded, you know, it’s really, they think, ⁓ this is complex. We don’t really know. Well, maybe we just haven’t read the paper from three months ago or that really useful webinar from a conference that was last week. I’m talking about that exact symptom that is legitimate. So yeah, that’s my real passion, Bill is empowering people because, know, I think we all have these stories of being disregarded or.

You know, and I do have a lot of hope for the future and I love medical professionals. I have some incredible people that I work with, but curiosity is just not usually the experience of most professionals when they’re, you know, they are just humans doing their best overwhelmed and usually not fully up to date.

Bill Gasiamis (40:39)

Jessica Dove London (40:43)

That’s right.

Bill Gasiamis (41:06)

Jessica Dove London (41:08)

want to do it together. You know, I was on a call this week with not someone from stroke or cerebral palsy, but it was a consult specialist from another disease. I won’t mention what disease, but they said to me on the call, they picked up something from their desk and they said, I have a journal sitting here from early October and I’ve been trying to read it every day. But this person is a surgeon and is very, very busy. And they were telling me to build my tool, like this tool for doctors. She was like,

We can’t stay up to date and we really want to, and we do. Like she will read that paper. But it’s such a burden on healthcare professionals. So my real hope in the future is that we go to our professionals and we look together at the evidence. know, there is that, cause you know, the truth is some world leaders obviously in a lot of professionals know a lot more and their lens is very useful of going, actually that is interesting. this is something we hadn’t thought about, or let’s look at this. Just that there’s time limitation.

All right, sound good.

Bill Gasiamis (42:08)

Jessica Dove London (42:19)

actually.

Bill Gasiamis (42:35)

I’m going to spend an hour reading that. what somebody needs surgery. No problem. Let’s go. I totally get it. I get it. And this tool kind of enables patients, I think, to have more information and take that to a meeting with a surgeon with a clinical, you know, in a clinical setting, wherever they are, and begin a conversation that perhaps wouldn’t have begun again. That information then does go kind of in that

Jessica Dove London (43:09)

Bill Gasiamis (43:31)

Jessica Dove London (43:57)

don’t want to be doing this alone. Like that’s the other thing you want. You want people to help you and have the answers and give you better. You know, you don’t want to be doing the wrong treatment or wasting that, you know, I always think you can’t try everything even if lots of things worked. But you can do things that don’t work or you can do things that are risky. And I think for so long, has been very risk averse. However, there are so many treatments that are

You know, have huge outcomes. You know, we, one of the things we did with our son, he started school in continent. And I listened to a podcast interviewing a world leader out of UCLA. They, um, you know, we’ve actually got a lot of these stories, barely we’ve been able to talk before about some of the things we’ve tried, but it’s a, an external device giving, uh, this is a different one building what we talked about, but it’s a device you put on your back. And it was this new breakthrough about, uh, the spine is connected to motor planning and he.

within two days became fully continent. And this is a $300 machine. It was free. The protocol was free and he’s completely continent at school. Like that’s his whole life changed. And the reason I did it is because I listened to a podcast with a world leader and it’s heaps of evidence. There just wasn’t yet evidence in cerebral palsy because they just brought it to cerebral palsy from spinal cord injury. And his whole life changed and

I actually have a friend who’s a world leading researcher in this space in cerebral palsy and me and him have spoken about this technology and it’s very exciting. But not everyone can go and talk to this world leading research to go, yeah, this is valid. This makes total sense. You should be trying this. And so how many people are incontinent because of that one particular insight that’s not being shared. know, there’s just so many stories like this of things that are low risk, that have really good. ⁓

potential to change people’s lives.

Bill Gasiamis (46:17)

Jessica Dove London (46:23)

Bill Gasiamis (46:28)

the beauty of it, right? We wouldn’t have had that information hadn’t it been for this particular product coming up in the search in the results. ⁓

Jessica Dove London (46:37)

is I want new technology and new equipment. And so last week in my update, it found me a patient comment of someone who’s built a device, a hand device to hold things and they have a web link, but they themselves went and built this device. All the plans are online. And because I’m obsessed with new technology, it’s doing that for me. I’m also obsessed with like new wheelchairs and new, you know, know, new scooters and it’s all.

Bill Gasiamis (46:44)

Jessica Dove London (47:06)

Bill Gasiamis (47:17)

Jessica Dove London (47:37)

share that page when you ask Tony, you can do a URL and share that for your listeners so they can get access to it. Just so you know the bottom so they can just share it and see if it’s useful or not. And that’s the thing like it’s more about is it useful or not for you.

Bill Gasiamis (47:44)

Yeah, I think what I’ll be doing is answering people’s questions because they’re so lovely to ask them. What I’ll do is I’ll do a search for them on tourney. I’ll record the whole thing and I’ll tell them, you know, one of my stroke survivors who listens to my podcast wants to know about this information. Give me the data. We’ll come up with some research. I’ll answer the question. And then like, I’ll feel amazing that that happened relatively quickly as well, which is going to before for me to actually

my gosh, I just had that feeling where I’m like that doctor who gets asked these questions and doesn’t know. So says, my God, I’m going to leave that unanswered or or I’ll tell them there’s nothing about that that we can talk about because there’s no information. I just felt like that doctor where somebody asked him the question and I was like, I’ve got no idea what you’re talking about. Just keep doing what you’re doing or what I’m telling you to do. Whereas now that goes away. That feeling of

I don’t think I can help you, goes away. We might not be able to have the answers. We might find out that in fact there is nothing available yet in that space, right? So that’s kind of where Tony will also go. It’ll go, well, there’s nothing here.

Jessica Dove London (49:04)

that particular technology and that thinking. Like there was actually a surgery of how that was using the same, doing the same amount of healing. But the benefit of obviously using a machine that you put on your back is it’s not, or brain surgery, which is hugely risky or implanting devices and all that. It’s just not always answers. There’s not always evidence, but there is things, there’s not much happening. And that’s probably my last thought to share is just.

Bill Gasiamis (49:49)

Jessica Dove London (49:57)

And there was an online event about teenagers getting into skate parks. And I just had such hope that there’s all these people out there trying to make like a Yeah, I didn’t attend because I’m like, he’s only 10. I’m like, no, we can’t do this yet.

Bill Gasiamis (50:40)

I love that you don’t want him to break his arm roller skating.

Jessica Dove London (50:47)

Bill Gasiamis (50:48)

Jessica Dove London (50:51)

Bill Gasiamis (51:15)

Jessica Dove London (51:31)

But you can try it for free. So you can just try it for three weeks and see if it’s valuable because end of the day, that’s all we want. And you know, we want your feedback. If you’re like, I’d love it to do this, to do that. We’re a team that really just want to, you know, that’s the beauty of being a technology team is we can build some of these solutions pretty easily. So yeah, you can go through the link and get a 10 % discount, but you can also just try it for free and see if this is valuable for you.

Bill Gasiamis (52:22)

Jessica Dove London (52:29)

Bill Gasiamis (52:49)

that you’ve done that and that it’s there because it’s definitely going to improve. It’s going to decrease the amount of time that I take to find information to help me as well because I’m a stroke survivor and I’ve got my own stuff I go through. So thank you for that.

Jessica Dove London (53:30)

Bill Gasiamis (53:31)

I encourage you to explore the tool for yourself. You’ll find a listener discount code in the show notes. More information at recoveryafterstroke.com/turnto, and remember this podcast exists so that no stroke survivor ever has to feel like they’re doing this alone.

If you would like to support the work that I do here, you can support me on Patreon at patreon.com/recoveryafterstroke. Your support helps me continue recording these conversations and working toward my goal of a thousand episodes. Thanks for listening. I’ll see you in the next episode.

The post Tunrto.ai for Stroke Recovery: Why This Tool Is a Game Changer for Survivors appeared first on Recovery After Stroke.

Double vision after stroke is one of those symptoms no one imagines they’ll ever face—until the day they wake up and the world has split in two. For many stroke survivors, it’s confusing, frightening, and completely disorienting. And when it happens as part of a brainstem stroke, like it did for 45-year-old attorney Jorden Ryan, it can mark the beginning of a long and unpredictable recovery journey.

In this article, we walk through Jorden’s powerful story, how double vision after stroke showed up in his life, and what other survivors can learn from the way he navigated setback after setback. If you’re living with vision changes or recovering from a brainstem stroke, this piece is for you.

The Morning Everything Changed

Jorden went to bed preparing for a big day at work. By morning, nothing made sense. When he opened his eyes, the room looked doubled—two phones, two walls, two versions of everything. He felt drunk, dizzy, and disconnected from his own body.

Double vision after stroke often appears suddenly, without warning. In Jorden’s case, it was the first sign that a clot had formed near an aneurysm in his brainstem.

As he tried to read his phone, he realised he couldn’t. As he tried to stand, he collapsed. And as nausea took over, his vision became just one of many things slipping away.

He didn’t know it then, but this was the beginning of a brainstem stroke recovery journey that would test every part of who he was.

Even when paramedics arrived, the situation remained confusing.

By the time he reached the hospital, he was drifting in and out of consciousness. Inside the MRI, everything changed again—his left side stopped working completely. He couldn’t move. He couldn’t speak. He couldn’t swallow. His ability to control anything was gone.

For many survivors, this is where the fear sets in—not only the fear of dying, but the fear of living this way forever.

Understanding Double Vision After Stroke

Double vision happens when the eyes no longer work together. After a stroke—especially a brainstem stroke—the nerves that control eye alignment can be affected.

Survivors often describe it the way Jorden did:

In Jorden’s case, double vision wasn’t the only issue, but it shaped everything that came after. It influenced his balance, his confidence, and even whether he felt safe leaving his home.

Jorden spent nearly three weeks in a coma-like state. Days blurred together. Friends visited. Family gathered. He remembers fragments, but not the whole chapter.

When he finally became more aware, nothing worked the way it used to—not his speech, not his swallow, not his limbs, and certainly not his vision.

This is something many survivors aren’t prepared for:

Inpatient rehab became Jorden’s new world. It was full of firsts, none of them easy.

The first time he tried to sit up.

Everything required more energy than he had.

“When my affected hand moved for the first time, I felt human again.”

Double vision made everything more complicated, especially balance and spatial awareness. Even brushing his teeth triggered trauma because of early choking experiences in hospital.

Still, he kept going.

Just like so many survivors say, the world didn’t stop for Jorden to recover.

On the very day he left inpatient rehab, his close friend—who had also lived with paralysis—died by suicide. Not long after, his dog passed away too.

It felt unfair. Cruel. Like everything was happening at once.

But even in that darkness, Jorden found a way to keep moving.

Double vision after stroke made walking terrifying. Every step felt unpredictable. Every movement demanded complete attention.

He used a slackline as a walking rail. He held onto countertops, walls, chairs—anything that would keep him upright. He practised daily, even when the exhaustion was overwhelming.

This is something survivors often underestimate:

Your brain is constantly trying to make sense of visual chaos. Of course you get tired faster. Of course progress feels slow.

But slow progress is still progress.

Many survivors rely on humour to keep themselves grounded.

For Jorden, it showed up in moments like these:

Humour didn’t erase the trauma, but it gave him permission to keep going.

“Now it’s me versus me. Every step I take is a win, even if no one sees it.”

His story is proof that even when everything falls apart, life can still move forward.

You are not alone.

And you don’t have to navigate that alone either.

If you want guidance, support, and practical tools for rebuilding life after stroke, you’re invited to explore the resources below:

Read Bill’s Book:

Join the Patreon:

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

He woke up seeing double, and everything changed. Jorden’s journey through double vision after stroke shows how recovery can begin in the darkest moments.

Jorden’s Facebook

Highlights:

00:00 Introduction to Double Vision After Stroke

Transcript:

Bill Gasiamis (00:01)

and in control of your progress. And so you never have to feel alone or uncertain again. Today you’ll hear from Jordan Ryan, a 45 year old attorney who woke up one morning and nothing worked anymore. His story is raw, honest, and filled with moments that every stroke survivor will recognize. Fear, frustration, identity loss, and the courage to begin again. But I won’t spoil the episode. I’ll let you hear it from him. Jordan Ryan, welcome to the podcast.

Jorden Ryan (00:58)

Bill Gasiamis (01:01)

Jorden Ryan (01:10)

Bill Gasiamis (01:26)

Jorden Ryan (01:34)

Bill Gasiamis (01:55)

Jorden Ryan (02:17)

And I had just seen a person to help me lose weight, the doctor and everybody. so I thought my health was good. And I had probably maybe a year and a half ago, I got into a jet ski, just knocked on conscious when I hit the water. So they did a cat scan and I didn’t know, but I thought that when they did that, I was fine. I was healthy. I didn’t know it would take an MRI to know that stuff. So I felt.

totally fine until the event.

Jorden Ryan (03:22)

Bill Gasiamis (03:38)

What was it like? What happened?

Jorden Ryan (04:08)

and I was gonna be the only one on the call, only attorney on the call. And so I woke up, I could not sleep, which was kind of normal with the CPAP machine. So I watched a movie and then went to sleep maybe an hour before it was time to wake up. And I went to bed and my alarm went off and I got up and I felt like really strange. I saw double, basically like I felt like I’d been drinking all night or something. Then, ⁓

I called into work and said, I’m sorry I cannot help you. Like, I was looking at my cell phone, which I do all the time, and I couldn’t read it or anything like that. being, you know, kind of naive, I think I took a quick shower, like, rinse some cold water on me, thinking maybe that would fix it. No, that’s ridiculous, but I thought it would, and when it got worse, that’s when I called on my one.

Bill Gasiamis (05:35)

Jorden Ryan (05:38)

Bill Gasiamis (05:49)

Jorden Ryan (05:52)

my leg went out. I didn’t know that it like couldn’t move at all. I just fell backwards and it was kidney due to throwing up. So then they came and I was still able to stand and talk and I felt, I mean, other than throwing up and double vision, I felt fine. So they told me that I was probably too young to have a stroke and that maybe it was just ready to go. So I was thinking that, okay, well I’ll just go to the hospital and

you know, get checked out and I’ll come home early. But it seemed to get worse as things were going. I pulled myself up onto the gurney the EMTs had and I remember thinking like I’ve got to go to the hospital now and they were like being nice and getting my stuff and my phone and whatever else and if I threw up they were getting the trash can and I remember thinking I didn’t care if all of my stuff was stolen. I need to go to the hospital now.

So we definitely got up there. When I was kind of in and out of consciousness by that time and I got to the hospital and they checked me out like an actual MRI. And when I was inside of it is when my left side of my body completely quit working. So I didn’t know what was going on. I mean, I had no clue. So I pulled myself out of the MRI.

And some people get claustrophobic or whatever, but this was a square machine and because I felt sick already and half my body quit working while I was in there, it really put fear in me to get out.

Bill Gasiamis (07:59)

Jorden Ryan (08:10)

Bill Gasiamis (08:27)

okay. So when you got to hospital, what was that like? What happened then?

Jorden Ryan (08:33)

He’s gonna die anyway. There are people that need them. Machine.

Bill Gasiamis (09:04)

they didn’t say that, did they?

Jorden Ryan (09:07)

Bill Gasiamis (09:22)

So you have a sense that that’s what they said while you’re being, while you’re on the bed being moved to the MRI.

Jorden Ryan (09:32)

They said, need to call the family so they can say their goodbyes. I think I overheard that. And I was like, what is going on? This can’t be this serious, right? So I really do believe I did hear that though.

Bill Gasiamis (10:12)

Jorden Ryan (10:19)

That’s correct. I wish it would have been just ready to go. Right. But it was all of a sudden went from, you know, pretty good news or decent, extremely dire consequences or like something bad was going to happen. Yes.

Bill Gasiamis (10:42)

Jorden Ryan (10:46)

Bill Gasiamis (10:49)

your recovery and help you feel more confident, informed and in control. And if you’d like to go deeper, remember to check out my book, The Unexpected Way The Stroke Became, The Best Thing That Happened, and support the show on Patreon at patreon.com slash recovery after stroke.

Jorden Ryan (11:34)

Bill Gasiamis (12:03)

Jorden Ryan (12:31)

Bill Gasiamis (12:40)

Jorden Ryan (12:59)

Bill Gasiamis (13:26)

Jorden Ryan (13:32)

but my body like wouldn’t move like I could tell my left hand to move and it would not. So, but other than that, like, ⁓ I felt normal so to speak.

Bill Gasiamis (14:13)

Jorden Ryan (14:25)

Yes, they said I had a stroke, but I had no idea how bad it was.

Bill Gasiamis (14:58)

Jorden Ryan (15:13)

and people would bring plants and when those died, I mean, wow, that’s really a long time to be in the hospital, you know? And the plants died because I couldn’t water them because I’m paralyzed, so, at that time.

Bill Gasiamis (15:54)

Jorden Ryan (15:58)

Bill Gasiamis (16:23)

Jorden Ryan (16:29)

Bill Gasiamis (16:32)

Jorden Ryan (16:37)

I was regaining everything back pretty well from the first stroke. And I thought I was Superman basically. I was healing pretty fast and I was like, I beat it. This is great. And then right back to being in a bad stroke and being a wheelchair and all of that.

Bill Gasiamis (17:25)

Jorden Ryan (17:34)

Bill Gasiamis (17:57)

Jorden Ryan (18:06)

Good chance of death.

Bill Gasiamis (18:37)

Jorden Ryan (18:42)

Bill Gasiamis (18:52)

Jorden Ryan (19:04)

This area right here always felt wet. Like it felt like I was in a pool, even though I wasn’t. So I couldn’t tell if I had food all over me or what have you that I would have to rely on people to tell me. I could chewing a salad is, I mean, it was really, really hard. That was kind of the, as I advanced, that was something I could do. My first stroke, I could not, you know, a steady is it.

I don’t know if you know what that is for using the restroom. It’s like a basically a dolly. put you on and I had a really hard time even trying to use that. I went through a lot of swallow tests. I could not swallow my own saliva. So that was very difficult for me. ⁓ They brushed my teeth and I felt like I was gonna die. I could not breathe. Like probably for that went on for like five minutes.

Like, I mean, I could breathe, sorta, but it was very difficult.

Bill Gasiamis (20:29)

Jorden Ryan (20:34)

Bill Gasiamis (20:45)

Jorden Ryan (20:50)

I think in my colon, so I had to go back to the ICU.

Bill Gasiamis (21:24)

Bill Gasiamis (22:16)

Jorden Ryan (22:17)

Yeah, I think that’s right. And I think probably if it would have just been on me, maybe I could have, but I was like, I’m going to be such a huge burden to my family in my way life is going to be so bad. Like, I was just like, how is this happening? You know, I don’t smoke and like, I don’t do heavy drugs or any of that stuff. So what is going on? And then they said, well, you must drink a lot of energy drinks. And I was like, no, I don’t drink any energy drinks. So they’re like, we don’t know what’s going on then. So just that was.

So for me, I really didn’t know what was going on.

Bill Gasiamis (23:15)

I wasn’t able to solve it. Everything was kind of handed over to other people. It’s not, it was nothing. It was not up to me. And I had to just kind of go through it.

Jorden Ryan (23:51)

people would come and visit me but and to me what’s very strange is that my voice sounded exactly the same before the stroke which it didn’t in real life I was probably like I have no idea what I sounded like but people couldn’t understand me so I would say something to them and they’re like sorry I can’t understand you but in my head I said it perfectly it sounded like me I can hear ⁓ like my slur now but I could not at first

Bill Gasiamis (24:47)

Jorden Ryan (25:06)

I remember being kind of upset at you because you said it was the best thing that ever happened to you and that was it was too new for me. I was like, what do you mean? That’s not possible. And a nurse came and said, well, you have the beautiful blue eyes and that my eyes are green. So I was like, well, maybe my hair will grow back and I’ll have blue eyes. Maybe it’ll be the best thing that ever happened. But yeah, I mean, I wasn’t really mad at you. I just said the time I could not accept those that verbiage.

Bill Gasiamis (26:02)

Similar to what you said. It was a bit more rude. It wasn’t so polite ⁓ And I and I was like, ⁓ no, no, no, you guys have got it wrong I don’t think I think you missed the boat. No, sorry. You missed the point the point being that It was really terrible when I was going through it for three years But when I came out the other side, there was a lot of personal growth. There was a lot of ⁓ Things that I had appreciated that I’d done that I’d learned that I’d overcome etc

that became the reason why I was able to say it was the best thing that happened to me because I started a podcast, I wrote a book, I’ve spoken publicly about it, I have this platform, I’ve created a community, all these things, right? So the things that I didn’t know that I was lacking in life before the stroke, I thought my life was complete, waking up in the morning, going to work, coming home to the family, cooking dinner, paying the bills.

paying the mortgage, the car lease. I thought it was all cool, all complete, but I was kind of unhappy. There was a lot that I was lacking in my life. And only because of the stroke journey, the end result of the podcast, the book and all that stuff, did I realize, ⁓ actually the…

Aftermath, the things that I have grown and discovered were the best things that happened to me. And it was because of the stroke. It’s such a weird and dumb thing to say. Like I can’t even wrap my head around it, that I had to go through something so dramatic to accomplish some amazing things. I wish I would have just done it before the dramatic events. I wish there didn’t have to be one. And that being said though, I’m 13 years.

post stroke, the first one, and I still live with the deficits. I still have problems sleeping on my left side because it’s numb and it’s burning and it tingles and all that kind of stuff. When I get tired, I still have balance issues when, ⁓ you know, sometimes my memory is a bit flaky because of it, but you know, a little bit, I still have deficits in my muscles and spasticity and all that kind of stuff and it hurts. I’ve accepted that part of it.

how it feels in my body, but I’ve also ⁓ gone after the growth. Like I’ve really, ⁓ seriously, dramatically gone after the post-traumatic growth that comes from a serious episode. And what I hope-

Jorden Ryan (29:10)

Bill Gasiamis (29:21)

Jorden Ryan (29:38)

Bill Gasiamis (29:45)

I definitely come across people regularly, even though ⁓ I’ve been speaking about it for a little while, who come across the first podcast episode that I’ve done, that they’ve found in the 370 odd. And then they hear me say that again. And then there’s also, there’s sometimes a repeat of that incident where I know exactly where they’re at. Like I know exactly what’s happening. I know they don’t know that. And then what I hope that happens is say in three or four years,

they can, when they go, there was that crazy guy who said stroke was the best thing that I wonder what that was about. I’m going to go get that book now and I’m going to read it. And I’m going to see if I can, you know, shift my mindset from perhaps something that’s been bugging me to something that we can grow from. And the book has got 10 steps to recovery and personal transformation. It not 10 steps to getting your perfect walk again, or making your hand work perfect again, or

you know, getting rid of your deficits. It’s not that kind of book. It’s an inspiring book. We’re trying to give people some tools that they can use that doesn’t cost them any extra that will improve the quality of their health and their life. And it doesn’t matter how injured you are because of a stroke. That’s what the book helps people to do. I love challenging people. I’m not, of course, you know, I’m not intending to make people think that I promote.

stroke is something that they must experience as ⁓ you know.

Jorden Ryan (31:23)

Bill Gasiamis (31:26)

It’s not on audible. I am going to remedy that at some stage. I’m going to remedy that and I’m going to get people the ability to listen to it because ⁓

Jorden Ryan (31:46)

Bill Gasiamis (31:49)

Jorden Ryan (31:51)

Bill Gasiamis (32:01)

After your three weeks in ICU the first time, I think you began inpatient rehab. What were those days like going through that first few motions of trying to get yourself up and about?

Jorden Ryan (32:16)

I was very lucky in the fact that I had a friend that had told me like, hey, you have done hard things before you were, you know, in Muay Thai, you were a attorney, you can do it again. And then in my mind, I was like, you’re not a brain doctor. What are you talking about? Leave me alone. So even though the expression was being really nice internally, that’s what I was thinking. Then I saw something like, um, it was, you know, I think it was a PT, a physical therapist who said,

think that you’re gonna heal yourself in three hours a week or a day or whatever, that’s not it. Then I had another friend who told me that his sister had a stroke and she wished she would have done more during recovery. So I eventually got to the point thinking like, well, all these doctors are saying it depends, which is a fair answer, right? And I tell clients that and they hate it. But I thought that’s better than absolute no.

They’re not saying and so they’ve made it to me like, well, maybe I won’t get better, but it’s not going to be from me not trying. I think another one of the people on your episodes ⁓ saying like they were always very positive and I was like, that’s not me. That’s I’m not 100 % going to be better. That just wasn’t my attitude during it. I mean, it’s good. wish I would have been, but unfortunately I wasn’t. But it kind of.

Over time it’s gotten better, but at first it was very difficult for me.

Bill Gasiamis (34:17)

Jorden Ryan (34:35)

Being able, like, even just to move my finger, like, in my defective hand for the first time was huge, and then I was able to use my thumb to… I feel human again. I mean, to be honest with you, when I couldn’t talk and I couldn’t move and everything, it just felt weird, like it wasn’t me.

Bill Gasiamis (35:22)

Jorden Ryan (35:27)

were some setbacks. I, again, I watched one of your episodes and a gentleman told me, like I said, he had the fatigue set in later on in his journey. And so one of the things I was like, well, I’m so lucky that I don’t have that because I go to the gym pretty often. And that would be devastating to have fatigue. And then I also had fatigue. I mean, to the point where I didn’t want to move around at all. didn’t want to

get out of bed hardly so there’s setbacks in the fact that like my my sister and brother-in-law luckily took me in I mean they were like ⁓ angels so to speak but they live in a big one bedroom app like one one floor house I meant to like a ranch style and just going to the bathroom was a setback because it would take forever to walk down the hall or whatever I mean it was my gate it was a walking style was

Pretty hilarious there, you saw me.

Bill Gasiamis (36:27)

Jorden Ryan (36:34)

Bill Gasiamis (36:53)

Jorden Ryan (36:55)

Bill Gasiamis (37:11)

a few, maybe about four five months after the second bleed, it was still very dramatic. And I couldn’t really appreciate how ⁓ I took for granted that trip before that. Like it was just, it never crosses your mind.

Jorden Ryan (37:55)

Bill Gasiamis (38:11)

Jorden Ryan (38:24)

Bill Gasiamis (38:32)

Jorden Ryan (38:44)

Okay, now what foot goes next, right? It sounds ridiculous, but that’s really what I was like. My mind was, I had to think every time like learning to walk. I was like, what hand goes in front? with what foot? Like it was, I mean, very, very basic, like to the beginning, right? Like before elementary school, like it was, so everything I did was taxing mentally because I just had to think about stuff that you don’t normally think about, right? Like

Okay, I should breathe. It wasn’t quite as bad as that, but that’s pretty close.

Bill Gasiamis (39:37)

Jorden Ryan (39:53)

When I got out of the hospital, my friends and family and whatever got together and took me out to eat and the noises were so loud that my senses were too heightened. It was confusing to me. I had a lifetime of going out to eat with friends and going to drinking or whatever. This was just a lunch and I couldn’t really handle it. It was almost too much for me. The car ride from

maybe a three hour car ride, had to close my eyes because I would feel sick if they were open. it was, I realized just how different my life is gonna be, right?

Bill Gasiamis (40:59)

Jorden Ryan (41:02)

I have to push myself to do that kind of stuff because I don’t know, I think it’s easy to become depressed, right? Like, it’s easy to just be like, I will just sit here on the couch, watch TV. I don’t really watch TV, but… And even that is hard with my eyes doubled, but I mean, like, I push myself to hang out with friends or go to eat or something. But it’s very difficult. I would rather just stay home. If you just ask me, like…

I mean, I’m always excited to go out with people, that’s not what I mean, but it just is easier to stay home.

Bill Gasiamis (41:37)

It’s not the easy way out. seems that way, it’s potentially leading you down a path that you don’t want to go down.

Jorden Ryan (42:11)

Bill Gasiamis (42:26)

Jorden Ryan (42:31)

Bill Gasiamis (42:47)

And then I’m gonna be really exhausted tomorrow. I know that tomorrow I’m gonna be really, and I’ve got nothing booked in. I’m gonna do absolutely nothing for the entire day so that I can go out and go hard tonight, whatever tonight looked like, whatever that was gonna be like. And that was where I earned my recovery, my lazy. I’m sitting on the couch and I’m watching TV or I’m reading a book or I’m not doing anything.

That’s exactly how I kind of used to talk to myself about doing nothing on the following day.

Jorden Ryan (43:54)

people and everything just kinda makes it harder to be depressed.

Bill Gasiamis (44:32)

Jorden Ryan (44:57)

It was almost like I didn’t expect that that late in my recovery It was not that long but still it was strange to me probably maybe a month after I got out of the hospital so luckily my mom took me to the pool quite a bit and Pushed a wheelchair even though it’s really heavy and she is older so

Bill Gasiamis (45:50)

appeared like it was working normally, but it felt strange because the water pressure on my affected side, that was different. Feeling the water pressure on my affected side for the first time was really strange. What was cool about it is they gave me a life vest, so there was no chance of falling over, drowning, dying, or anything like that in the water. And it was really a real relief because my body felt really free for the first time. And then as I got better and we started to get out and about,

One particular summer we went to a ⁓ waterfall here near where I live. And in the pond at the bottom of the waterfall went for a swing. But the difference is ⁓ fresh water ⁓ is different from salt water. And I had never swum in ⁓ fresh water.

Jorden Ryan (47:11)

Bill Gasiamis (47:14)

Jorden Ryan (47:17)

Bill Gasiamis (47:42)

Jorden Ryan (47:47)

I did a triathlon in the ocean and it was so much easier. I was pretty happy. I was the other way around. I’m used to swimming in fresh water and then in salmon and salt water and that was all post stroke. But I can know what you mean. There’s a huge difference.

Bill Gasiamis (48:27)

Yeah, you’ve done a triathlon post stroke.

Jorden Ryan (48:33)

Bill Gasiamis (48:59)

What’s cool about, what’s cool is that now there’s competitions where people can go and compete ⁓ after they’ve been, like the Paralympics is a classic example, right? And all the events leading up to the Paralympics where people can go and compete, get physical, even though they have deficits. That wasn’t something that was possible decades and decades ago. It’s a fairly new thing. I love that even though people are injured and

they’ve had difficult times, perhaps their limbs aren’t working correctly. Some people still decide, I know I’m gonna be a competitor still, I’m gonna be with one arm, with one leg, with whatever my, whatever I have left, I’m gonna do the most I can and compete as much as I can to be the best in my particular sport. I love that about the things that people can access today about participation in sport, even though they’re

injured.

Jorden Ryan (50:02)

It is good that they have that kind of stuff, I think. Like, I’m looking at bikes for mountain biking with three wheels and stuff, so.

Bill Gasiamis (50:39)

Jorden Ryan (50:45)

as important as it was before.

Bill Gasiamis (51:15)

Jorden Ryan (51:18)

Bill Gasiamis (51:44)

Yeah, same with us in Australia. mean, there’s lots of laws to try and protect people who have a disability of some kind, injury, whatever you want to call it, so that there’s less discrimination, so that there’s more services, so there’s more access. ⁓ It’s one of the best conversations that people have because they kind of say, well, we know that this particular service that is going to be provided

is going to be provided for all the population and 93 % of the population, for example, it’s not a real number, will be able to access it beautifully. What about the other 7 % who are not gonna be able to access it? We need to think about them. We need to think about how they’re going to go about ⁓ traveling on this service or accessing this service or getting in and out of this particular office or building and all that stuff.

is taken into consideration in the design and planning phase now. So you can move around Melbourne, my hometown, in a electric wheelchair or a regular push wheelchair. And you will not have to worry about getting on a train, getting on the public transport, a bus, the tram, ⁓ going down a curb, all the curbs are ⁓ angled down. So this beautiful, nice smooth path towards the road and then up again.

Jorden Ryan (53:13)

Bill Gasiamis (53:22)

Yeah, what’s the point?

⁓ Now, the thing about stroke is that unfortunately life doesn’t get put on hold for us to recover from it and then let us get back into life as if we were okay. And I remember going through the third bleed and then a couple of weeks later, literally two weeks later, I think, maybe about a week later, my mother-in-law passed away. And then we had to have her funeral before my brain surgery.

and my wife had to deal with all of that, right? You also, you lost one of your friends soon after you got out of, I think it was at rehab.

Jorden Ryan (54:19)

Such a little thing like, wow, this guy can go to the bathroom by himself. I wish I could do that, right? But unfortunately, yeah, he died by suicide the day that I got out. It was devastating and very hard. I mean, that was somebody I planned on spending a lot of time with because he lived in the same city that my sister took me in that I was going to hang out with. I mean, not just about me. It was just sad that that happened, obviously.

Bill Gasiamis (55:14)

Jorden Ryan (55:22)

dick dab that, but I felt like I was in a country song.

Bill Gasiamis (55:55)

Jorden Ryan (55:56)

around me. So I mean, there are so many amazing things. So I have to open that up and not stay in the darkness too long. I can’t stop from happening personally, like this part of my life, but I can get out of it. Like luckily I have those tools, so to speak. Like I can be like, okay, this is happening. This is amazing. Or my family is healthy or whatever it happens to be or

just people being really nice, seeing that, right? But I did have, my hand was like clawed and I would open the door and some people were nice and be like, let me get that door for you. Well, I cannot open my hand to let go of the door. It would almost knock me over several times. So kind of funny.

Bill Gasiamis (57:13)

beneath the footrest and kind of the wheel of the wheelchair and it was kind of getting dragged and I couldn’t feel it had no idea but my wife was struggling to push the wheelchair

Jorden Ryan (57:54)

Bill Gasiamis (57:57)

was going, well, this so hard to push. And then we had to have a look around and realize the reason it was hard to push, because my foot is under the wheelchair and I have no idea that it’s there and it’s getting stuck. ⁓ We laughed about it because what else are you gonna do at that moment? It was pretty ridiculous and funny at the same time.

Jorden Ryan (58:16)

my leg, but I mean, it felt like I ran over a rock or something like, so similar, not the same, but similar to me. Like, didn’t know if my leg would ever come back, you know? So people are all different levels of their journey. Like I was not upset, but I was surprised to see people in patient rehab. They could walk so well. like, Hey, we are really struggling over here. We’re in a wheelchair. That’s not the right attitude to have, but that’s how it was, you know,

Bill Gasiamis (59:12)

Jorden Ryan (59:14)

Jorden Ryan (59:42)

Bill Gasiamis (1:00:05)

Jorden Ryan (1:00:08)

they would say, use this to pull out the saliva and the, you know, whatever it was. So that’s how I would, I had to brush my teeth like that, then wipe it out. And it was much different feeling. mean, there are so many odd things that happened I can’t remember. And I wanted to tell people on your broadcast because, you know, it is difficult to lay there and be hurting and like so bad with your deficits and seeing a lot of people that are healed because you don’t know if you’ll ever get there.

So I wanted to say that just because like you are bad and your deficits are bad, there is help. There’s a chance. I don’t know for sure everybody, but there is, I think hope is, I learned about it in the hospital and I think that it’s very important to know that there’s possibility of getting better.

Bill Gasiamis (1:01:29)

Jorden Ryan (1:01:34)

At least I had the cards to look through, know, so that was very nice. But my actual job role was I worked with a small team here and we did contract work to make sure that there wasn’t anything that was, you know, bad for us.

Bill Gasiamis (1:02:18)

Jorden Ryan (1:02:48)

to go on basically because I couldn’t communicate at all. Some people have it where they can’t think words or where they can’t do the, I mean, I couldn’t say anything. it was very difficult, it was very hard to not be able to talk to people because I do communicate every second of my life as far as I know. So to not be able to communicate at all, it was very difficult. I had to point at things and try to write stuff out even though I couldn’t write. So it was…

pretty hard.

Bill Gasiamis (1:03:48)

Jorden Ryan (1:03:57)

And luckily, think that helped my, you know, it’s hard to say what heals you because there’s so many things that play a part in it. But I was able to, somebody could understand some words that I said at least. So that was a very positive start.

Bill Gasiamis (1:04:45)

Jorden Ryan (1:04:56)

and I just walked and I did that because there was a rail at the YMCA that I walked by and I was like, wouldn’t that be nice if I had an outside rail that I could just use to walk and so I had slack line and then underneath it, I wore it out like a dog or a cow walking all the time and like because I could not use my my left leg was not very strong at all but it was getting stronger. You know, I tried to jump

like up and I could not even inch vertical it was zero and I couldn’t bend my legs up so I think that was the start of something that really helped me because I could go do it like any time of day or night I mean I didn’t do it 2 a.m. but I did it it was easier to do instead of having to rely on someone to give me a ride somewhere ⁓

Bill Gasiamis (1:06:17)

Jorden Ryan (1:06:19)

Bill Gasiamis (1:06:20)

a slackline.

Jorden Ryan (1:06:22)

Bill Gasiamis (1:06:25)

Yeah, I understand. ⁓ I just didn’t know it was a thing that you could even get one. I mean, I’ve never had one. I’ve never thought about one, but like it makes complete sense now, but I didn’t realize. I should have realized that you can get everything off Amazon, but that’s all right. I was just trying to wrap my head.

Jorden Ryan (1:06:49)

A thing that is battery operated that sends like so your hand will go like this I can’t remember what it’s called it’s like vital stem but just on Amazon too and I would work that every day tried to get my hand to open and tried to because they try to get you to turn a key imagine a key like you’re starting your car but with your other your affected hand and this would help that like it would wake up those muscles so kind of

Bill Gasiamis (1:07:49)

Jorden Ryan (1:07:50)

and not have a girlfriend or a wife, I was like, well, am I never gonna have sex again? And that was very scary to me.

Bill Gasiamis (1:08:23)

Jorden Ryan (1:08:27)

is, it has not happened yet, but I don’t have the same concerns that I had. Like I think to say it politely, I think that I’m able to perform in the bedroom. don’t know though. So maybe I’m going to say that I can’t just to feel better about myself, but definitely my libido or whatever has gone down, you know? So, ⁓ it is what it is, as they say, like maybe it will pair, maybe it will not. don’t know.

Bill Gasiamis (1:08:57)

Jorden Ryan (1:09:21)

I was like, well, maybe I’ve been in the hospital so long, that’s the problem. And so I just didn’t, I mean, as you know, you just don’t know. So hopefully, yeah, I will be able to talk to the doctor about that. I think after being in the hospital the first time, my modesty is kind of out the window. Like I had to do so many things in front of nurses that asking difficult questions is not as difficult as it once was.

Bill Gasiamis (1:09:57)

Yeah, I imagine having had your diaper changed by a nurse at the age of 40 something is probably one of those moments that kind of says, well, I’ve done that. If I’ve done that, everything else is a piece of piss, so to speak, after that, as we say.

Jorden Ryan (1:10:27)

Right, that’s exactly correct.

Bill Gasiamis (1:10:39)

Jorden Ryan (1:10:56)

Everything is with somebody like you can’t get up out of your chair. You can’t go do anything So all of a sudden you’re just you’re free like go ahead And like the same day or the day before this was a big no-no now. I can just do it and like yep so I mean, I’m still scared to cut things with the knife like vegetables stuff because I’m on blood thinner and I don’t want to have an accident I mean you don’t know what you don’t know so I

cognitively, I think that I’m there, but I also think that could walk, right? And that’s not true. So I don’t know what could happen and what could not happen. So rehab is just, I try to do, be dangerous, the safest I can. Like I walk, but I try to make sure that I can grab onto something or if I’m gonna like try to walk, I can fall or I’ll be by my bed or something like that. And so it is difficult to try to be by myself even now. It’s been a

over a year.

Bill Gasiamis (1:12:24)

Jorden Ryan (1:12:28)

when they say they tie their hand up or whatever. I didn’t do that, but I imagine having kids would be difficult for me because I couldn’t barely do things with my left hand. Like, forget it. I would just do it with my right hand. anyway, I say that because yes, I am learning a lot more now, even though ⁓ it has been over a year. It is scary to read stuff, facts, I think that are outdated that say, you know, your height and specificity is a year. Then after that,

Probably not as much. Things aren’t gonna happen as fast. I have not found that to be true, but who knows?

Bill Gasiamis (1:13:36)

Jorden Ryan (1:14:03)

Bill Gasiamis (1:14:13)

Jorden Ryan (1:14:33)

If I did have cognitive issues, I would really have a hard time going through the medical system and especially what doctors say. It is, I mean, it is scary. I’ve had more doctors than I can imagine, different cities and different areas and they say different things. So again, I took that to my advantage of I got to choose my own destiny instead of a doctor saying, that’s the best you will get ever. It’s like, yeah.

Bill Gasiamis (1:15:29)

I had half of my thyroid removed ⁓ just before my after my stroke, my brain surgery about a year and a half later. And the surgeon came in after we’d done all the tests and she was trying to encourage me to have the surgery. And she said, we’ve got the results from your tests. They’re inconclusive. So she goes,

But that doesn’t mean it’s not cancer. So it could be cancer and it could not be cancer. And then she closed the door and walked out of the room and I was.

Jorden Ryan (1:16:35)

Bill Gasiamis (1:16:37)

10 or 15 minutes later. And when we went in the meeting, ⁓ the surgeon came to me and said, ⁓ hi, how are you? How’s things? And I said, look, I’m okay, but I need to talk to you about what you said to me earlier. She goes, what did I say? I said, you said you dropped the C word, then you closed the door and you walked out.

Jorden Ryan (1:17:27)

Bill Gasiamis (1:17:34)

We a little role play. She was devastated at the same time, but I think that was a little lesson that made her think about maybe be careful with what you say in front of patients who could be vulnerable in your care. They’re in your care, so they’re vulnerable. They’re coming to you for support, not for trauma.

Jorden Ryan (1:18:06)

Yeah, I think I need you to go to my appointments with me. Tell the doctor some of these things because you’re right. Some of them do say stuff that is… I don’t know if they don’t know that it’s outlandish or they just do it so often they don’t realize it but when you are a patient and you hear something like that it’s a big deal. They say it like it’s nothing but yes of course it is a possibility but you know come on but…

I have all these surgeries they can do for me ⁓ such as a cochlear implant where I can hear out of this year because it’s so difficult but I can’t not come off the blood thinner. So there’s only a 5 % chance that I could have another stroke or so they say but man the strokes are hard. I remember walking around the YMCA one lap was no 10 laps was a mile and I was like this is crazy because I could only do maybe two with my

uh, Walker, and I heard you saying that you learned to walk twice, I was like, oh, I don’t think I could ever do that. And, uh, I remember thinking, I guess I would do it a hundred times if I had to, but boy, I sure wouldn’t want to.

Bill Gasiamis (1:19:35)

Jorden Ryan (1:19:56)

were my full model. So, no, I’m just kidding. I had to do it, you know, two other times other than when I was an infant, whatever, baby, whatever, it was so… ⁓

Bill Gasiamis (1:20:09)

Jorden Ryan (1:20:16)

Bill Gasiamis (1:20:18)

It’s more injury, it’s less brain that you’ve got to work with now every bloody time.

Jorden Ryan (1:20:49)

Bill Gasiamis (1:21:05)

Jorden Ryan (1:21:09)

Bill Gasiamis (1:21:19)

I did, yeah. They’re my favorite ones to do, but they’re the hardest ones to do as well because ⁓ they require you to be really in flow and out of your head. So if you’re thinking about what you want to talk about, it’s really hard to do it. And also I get really self-conscious when people walk past me and I’m talking to a stick ⁓ and a camera. It’s just a bit weird.

I know heaps of people are doing it and they’re comfortable with it and it’s good content because I know people love watching it, but it’s just so hard to do. And especially in winter, like I don’t want to be outside doing that stuff in winter. I don’t mind sitting down here and doing it. I will do some more walking once. I definitely will. But I think I’ll prefer to find somewhere where that’s a little more secluded where I don’t have to worry about people coming into my frame or into my field of view or something like that. It’s just so hard.

Jorden Ryan (1:22:16)

Bill Gasiamis (1:22:45)

Jorden Ryan (1:22:53)

I can only do what I can do and like the rest, whatever. You know, so that I think that’s the kind of person I am now. It’s been a major mind shift, totally different than what I was before. And instead of worrying about every little thing or maybe I won’t wake up tonight. mean, I just let’s get, let’s go after it. Let’s get it done. Right. So I don’t know. It is scary too. It’s sometimes to go to sleep because I have my CPAP machine on.

And then I’m like, maybe this will cause another stroke. Maybe I should stay awake. That’s ridiculous, I have to get some sleep. But I’m just, now I think that I just do it, you whatever it happens to be. Whether it happens to be walking down the hall or it happens to be, the good thing about me now is that I don’t care what I look like. I don’t care about like…

I have my why or whatever and so nothing else matters, right? I’m dialed in. Like I don’t care if I have food on my face or like one bad example is I was working out the why and workout was like standing up. It wasn’t hard. It wasn’t like hardcore aerobics or anything. And I peed my pants a little bit. Like instead of not working out and not doing anything and going home, I just was like, ⁓ I guess, I mean, it wasn’t like all over the equipment or anything, but.

It was enough that I was like, okay, I will stay at the gym and get things done where before I would never do that.

Bill Gasiamis (1:24:51)

mental runner who doesn’t stop running under any circumstances. Nothing is going to get in the way. That was very Goggins-esque what you did. ⁓ I paid my pants. So what? Keep going.

Jorden Ryan (1:25:12)

trying to do something so I’m very dedicated to try to get better.

Bill Gasiamis (1:25:45)

and tomorrow I’m gonna be better at it.

Jorden Ryan (1:26:17)

Jorden Ryan (1:26:45)

vision the second, well both times, you know the second time and I was kind of pretty upset because one thing of me all the way through my body was messed up and I was like well if only my both my legs were good that would be great right or both my arms were good I could at least do the wheelchair pause like pretty good or I wish both of my eyes were tight I could read what I have all this time off but none of the

I was thinking how selfish is that? I mean I have one thing that works so I need to get it together right and live the best life that I can. I think that is probably what I would say one sentence is ⁓ live the best life that you can. Whatever you’re into if it’s doing nothing then it’s fine but if it’s just be happy be content of what you have.

Bill Gasiamis (1:28:05)

Jorden Ryan (1:28:12)

Bill Gasiamis (1:28:26)

If you’d like to go deeper, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. You can get it at recoveryafterstroke.com slash book and support the show on Patreon at patreon.com slash recovery after stroke. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

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The post Double Vision After Stroke: What Jorden’s Story Reveals About Brainstem Stroke Recovery appeared first on Recovery After Stroke.

When the clock struck midnight on January 1st, 2021, most people were celebrating a fresh start. Jonathan, at just 35 years old, was unknowingly entering the most challenging chapter of his life. His speech had begun to slur, his head pulsed with pain he couldn’t explain, and within hours he was rushed to the hospital during the height of COVID restrictions.

That moment was the dividing line between the life he once knew and the life he would rebuild from the ground up.

This is a story about what hemorrhagic stroke patients recovery really looks like, the kind that forces you to confront who you used to be and decide who you’re going to become next.

Before everything changed, Jonathan was thriving. He worked in food science — a field he loved, filled with global imports, inspections, and ensuring food safety for the public. He enjoyed hiking, biking, dinners with friends, and a vibrant social life in the city.

He’d finally built independence, moved into his own space, and was exploring a new relationship.

His life had rhythm, structure, forward motion.

But as many survivors later recognize, stroke doesn’t appear at a convenient time. It arrives abruptly, often when everything seems stable. And for people seeking to understand hemorrhagic stroke patients recovery, this contrast before and after becomes a core part of the journey.

In the days before the stroke, something felt off. Jonathan experienced intense migraines, stronger and stranger than anything he’d felt before. But like so many young survivors, he didn’t recognize them as warning signs.

Then, on New Year’s Eve, his speech began to fall apart. Words wouldn’t line up. Sounds emerged out of order.

His girlfriend noticed instantly: something was horribly wrong.

In minutes, Jonathan went from preparing to welcome the new year to being rushed through hospital doors under strict pandemic protocols. He had no idea this day would reshape him forever.

Early symptoms often become the first chapter of hemorrhagic stroke patients recovery, because they reveal how quickly life can break open.

Doctors discovered an AVM — an arteriovenous malformation on the left side of Jonathan’s brain. It had ruptured, causing a hemorrhagic stroke.

The bleed had stopped on its own and even drained naturally, something his neurologists called miraculous.

Still, the damage was significant:

He heard the words “hemorrhagic stroke” and “AVM rupture,” but they didn’t make sense at the time. Many survivors describe this moment as surreal, as if the diagnosis is happening to someone else.

“When your own words disappear, your whole identity feels like it’s gone with them.”

After only seven days in the hospital, Jonathan was sent home in a wheelchair. There were no open rehabilitation centres, no inpatient programs, and no in-person speech therapy available.

Therapists arrived at his family home wearing full PPE, “like a movie scene.” Everything felt unreal.

All delivered at home, all while the world was shut down.

This is the reality for many navigating hemorrhagic stroke patients recovery during unpredictable times: healing becomes a collaboration between professionals, family, and faith.

The physical deficits were challenging, but the emotional costs cut deepest.

Jonathan lost:

Anger, sadness, frustration, and confusion were constant companions. These emotional injuries rarely show up on scans, but they shape recovery just as strongly as the physical ones.

And like many survivors, he wondered:

This is where recovery becomes something deeper than rehab. It becomes a reorientation of the self.

One of the most powerful moments in Jonathan’s story came when he realized he could walk again. And speak again. And see his family. And simply breathe.

He realized:

Gratitude is rarely the first emotion during a stroke recovery. But eventually, it becomes one of the most transformative.

Mindset is one of the greatest predictors of hemorrhagic stroke patients recovery, not because positivity fixes everything, but because a resilient mindset helps survivors keep trying even when the path is uncertain.

I’ve been there myself. When I experienced my strokes, I knew instantly that certain habits and patterns in my life had to change. Not because anyone told me to, but because something inside me shifted.

You begin to recognize what no longer serves you.

For Jonathan, faith became a compass. He studied scripture. He leaned into prayer. He found community in his church and mentorship in his pastor.

Whether someone practices religion or not, the principle is universal:

Faith, in its many forms, becomes a stabilizing force in chaos.

As Jonathan regained strength, he realized he wanted to give back.

He now supports survivors aged 20–80 in both English and Spanish, one of the most unique and powerful aspects of his journey.

The moment a survivor steps into service, their recovery deepens. Helping others expands meaning, connection, and purpose. I saw this in my own journey when I became a stroke advocate and launched this podcast.

Jonathan discovered a simple truth:

Visit:

In 2024, against all expectations, Jonathan got married. He started his own mentorship initiative for survivors, still volunteers across Canada, and continues to rebuild his life with clarity and gratitude.

His story is less about “getting back to normal” and more about discovering a new, purposeful version of himself.

Most importantly, your life didn’t end with your stroke — a new one began.

A young survivor’s journey shows what hemorrhagic stroke patients recovery can look like — courage, faith, and rebuilding life step by step.

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Highlights:

00:00 Introduction to Jonathan’s Journey

Transcript:

You may hear something in this journey that feels uncomfortably familiar and surprisingly reassuring. Now, before we get into it, I want to mention something quickly. Everything you hear, the interviews, the hosting, the editing, exists because listeners like you keep this going. When you visit patreon.com/recoveryafterstroke, you’re supporting my goal of recording a thousand episodes so no stroke survivor ever has to feel like they’re navigating this alone. And if you’re looking for something you can lean on,

throughout your recovery or while supporting someone you love, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. It’s the resource I wish I had had when I was trying to find my way. All right, let’s dive into my conversation with Jonathan now. Jonathan Arevalo, welcome to the podcast.

Jonathan Arevalo (01:23)

Bill Gasiamis (01:26)

Jonathan Arevalo (01:31)

biology and also food sciences. And during that time is what led prior to my stroke, which was in January 1st, 2021.

Bill Gasiamis (02:14)

Jonathan Arevalo (02:24)

for the safety, the safety before it goes out to the public.

Bill Gasiamis (02:57)

Jonathan Arevalo (03:00)

Bill Gasiamis (03:11)

Jonathan Arevalo (03:26)

reading it and as well physically inspecting myself. Yeah.

Bill Gasiamis (04:01)

Jonathan Arevalo (04:08)

and starting like my own life differently. But everything went well until things started to change when it came to relationships and also work and also other things that came along with it over time.

Bill Gasiamis (04:58)

Jonathan Arevalo (05:07)

So different activities like that to stay active.

Jonathan Arevalo (05:52)

And that was leading prior to the stroke and starting the new year. so then pretty much like on the 31st, leading to January the 1st, was the moment that I had my stroke. And then my ex-girlfriend who I was with during that time, which is already almost five years,

⁓ she noticed that my speech was, was, was going off. I had a lot of slurs in my words. I was getting like very intense headaches and it just didn’t seem normal. So she started to question and ask me questions that didn’t, didn’t make sense. So she automatically ended up calling emergency and I got rushed, ⁓ through emergency to, the hospital.

starting the new year.

Bill Gasiamis (07:22)

Jonathan Arevalo (07:27)

Bill Gasiamis (07:30)

Jonathan Arevalo (07:34)

Bill Gasiamis (07:42)

Jonathan Arevalo (08:04)

Bill Gasiamis (08:26)

Jonathan Arevalo (08:49)

that it was also a first time experiencing having a stroke. But I do remember like certain scenarios of being picked up from paramedics and then being rushed to the hospital. And then from there, not that much what happened afterwards, are certain things that I’ve forgotten or it’s hard to remember.

Bill Gasiamis (09:46)

Jonathan Arevalo (10:04)

I was also transferred to another hospital since the hospital where I was at, didn’t have the adequate ⁓ neurologist and specialist for stroke. So I believe it was on the third day or something like that. I was taken to another hospital where they do have specialists, neurologists and all that related to stroke. So they took my case because it was something very important.

And at the same time, they didn’t understand how I survived it as well because it wasn’t just a stroke on the left side of my brain. They found that it was an AVM. So it’s called anterior venous malformation, which could be caused from childbirth. As you get older, it could start to develop where you really don’t know because it’s internal.

So what triggered it was an aneurysm that made it rupture.

Bill Gasiamis (11:43)

There’s no big company funding it, no medical organization covering the costs. It’s just me, a fellow survivor doing everything I can to make sure these episodes exist for the next person who wakes up after a stroke and has no idea what happens next. When you support the podcast, you’re making sure these conversations stay online. You’re helping cover hosting and production fees, and you’re making it possible for new survivors months or even years from now to find hope when they need it most.

talking to you on this podcast because I had one of those in my head on the right side, near the cerebellum and it bled for the first time in November, in February 2012 was the first time my one bled. ⁓ But ⁓ I had numbness on my left side, the entire left side for a whole week before I went to the hospital. And then when they scanned my head, they said, we found a…

a shadow on your brain. The shadow on my brain is the white part on the brain scan on the MRI that reveals the bleed and the bleed. The bleed was caused by this blood vessel, faulty blood vessel that they called an AVM that burst and then created a lot of trouble, right? And then the whole journey begins and then it’s just, you know, starting out. So,

with mine, eventually they removed it from my head with brain surgery. How did they rectify the bleed in your brain? What did they do to stop it bleeding?

Jonathan Arevalo (14:15)

Bill Gasiamis (14:19)

they do that. I was told that sometimes they stop on their own and they don’t have to take any further action. But with mine, it bled another two times and they had to have brain surgery. But with yours, luckily, it stopped bleeding on its own.

Jonathan Arevalo (14:34)

and see exactly how did it happen and at a young age and someone that’s healthy and doesn’t have a history of being in the hospital or anything such as that. So that was the miracle itself. So the neurologist ended up ⁓ with their team. They ended up having, I had an angiogram.

And the angiogram was done through the side of the groin that goes up to your head, which they tried to ⁓ detect exactly the AVM. And that’s how they were able to find only one specific one that ruptured.

Bill Gasiamis (15:53)

Jonathan Arevalo (16:11)

Yes, it is. was like an experience that it’s hard to explain, but I felt like electricity in my body. And I don’t know why I felt electricity in my body, but I felt like shocks in my brain or like fireworks. And I was thinking, what’s happening?

Bill Gasiamis (16:19)

Fireworks.

Jonathan Arevalo (16:47)

So like facial, facial expression, kind of like when you feel in pain or something like that, or you’re trying to say things. So I had a lot of difficulty for that period of time. And also, since it happened on the left side of my brain, on the opposite side from arm to leg, I had ⁓ difficulty with my mobility. And also with my memory, my memory was affected.

⁓ about a percentage amount. it was very hard ⁓ my first year. It was very difficult.

Bill Gasiamis (17:59)

was 37 when I had mine and you were 35.

Jonathan Arevalo (18:04)

Bill Gasiamis (18:07)

Jonathan Arevalo (18:21)

⁓ My sister was the only one that had communication with the doctors, with the nurses and any specialist when it came to my case.

Bill Gasiamis (19:02)

After surgery, after you woke up from hospital, the first seven days, you said the better week you’re in ⁓ that situation.

Jonathan Arevalo (19:17)

Bill Gasiamis (19:29)

Jonathan Arevalo (19:35)

Bill Gasiamis (19:59)

Jonathan Arevalo (20:08)

Bill Gasiamis (20:12)

Jonathan Arevalo (20:19)

As if they’re going to see someone who’s with a virus or something. So it was like watching a movie.

Bill Gasiamis (20:55)

Yeah, pretty crazy times. So you did get rehabilitation. They did ⁓ support you with therapy for speech and all that kind of stuff. ⁓ How long did all of those therapies last? Was it?

Jonathan Arevalo (21:16)

Bill Gasiamis (21:20)

Jonathan Arevalo (21:23)

Bill Gasiamis (21:29)

Jonathan Arevalo (21:34)

Bill Gasiamis (21:40)

Jonathan Arevalo (22:02)

she ended up getting everything that I needed, so that way I get that support automatically right away, over the time, yeah.

Bill Gasiamis (22:40)

Jonathan Arevalo (23:05)

And it hurts you a lot because it’s kind of like not being yourself anymore. So you have something that’s been taken away from you. And so I did lose quite a lot. I lost my job. I lost the ability to drive. So I had to sell my car. And I also ⁓ lost that relationship that I was in.

that relationship ended. And I also wasn’t earning any money as well. So the only caregivers were my parents. had to live with them again. And for the past four years of recovery, which I’m still in that recovery stage of stroke, but I’ve improved a lot though.

I’ve improved a lot and which I’m very, very thankful. And that just goes based on just having faith. And that’s where I started to change my life. I started to change my life the moment I started to change my mindset, the way I think. And because the moment I started to change the way I think, it was the moment that I was just much more grateful for even though I lost everything.

I was simply grateful to be alive. And that was much, much more meaningful than everything that I had.

Bill Gasiamis (25:08)

Jonathan Arevalo (25:11)

Bill Gasiamis (25:20)

being grateful to be alive. Well, that was an easy one for me as well. I totally get it. That’s what I went through. And I had another opportunity to make things right, to support ⁓ myself in a different way, to think in a different way, have it, to try different things and experience things that I’d never experienced before. What, what was the thing that kind of made you feel grateful to be alive? I know that

Do you know what I mean? There’s a layer beneath that. is, I’m alive, okay, but what does that mean that you’re grateful to be alive? I get it, but there’s more to that.

Jonathan Arevalo (26:33)

four years, and it’s going to be almost five years, of the opportunity to reflect, of being thankful for, as you said, a place to live, for having my parents, for having my sister, and for having other loved ones that were there praying for me so that way I may live and not die. And at the same time,

⁓ Just being able to walk, to see, to speak, to understand. I was able to regain all of that that was lost. those were the reasons why I was grateful for.

Bill Gasiamis (27:48)

I want to go back to how things were before stroke. And I’m like, I didn’t want to do that. Like, that’s not a good place to go. You’re smiling. So I’m imagining that you think a similar way.

Jonathan Arevalo (28:30)

or does good for others or even for ourselves. So myself, I can say that I had everything that I wanted and I had the opportunity to do pretty much everything that I wanted. But at the same time, I wasn’t completely happy. And at the same time, we carry certain bad habits because we think according to society, where society will

will accept you based on the things and the patterns that you follow society. When it comes to doing certain bad habits that you think that’s good, but in reality, it’s not really good because you’re actually hurting and damaging who? Yourself. Which is something internally, both mentally, physically, and emotionally. But over time,

When you start to reflect on your old habits that weren’t completely fulfilling or bringing that happiness or that peace or that joy, then in reality, it’s nothing good. It’s only for the moment. And sometimes we keep on rushing and doing things for the moment to get that pleasure. But that pleasure only lasts for a moment.

So I had to change. And this recovery over these almost five years was a recovery not to just change myself, but to change the way I think, the way I speak and the way I act, because it’s a full connection. And that full connection is the reason why now what I’m currently doing is helping other people, other stroke survivors and other people with disability and also mental health, because we find it that each day

The world is getting worse, not better, but worse. Why? Because we live in a broken world. And the fact that we live in a broken world is a reason why there’s many, many men and women that are looking for pleasure, but for the moment. And that’s something that I had to learn for myself the hard way. Even though I wasn’t in drugs, even though I wasn’t an alcoholic,

even though I wasn’t doing harm to people, but I would still have bad vices or certain things that still didn’t make me happy. So that’s the main reason why.

Bill Gasiamis (31:38)

thought was a good idea at the time, but not really something that is meaningful, purposeful, useful in life. Smoking was one of those things I used to smoke. And people, often I had a friend of mine who would say that that thing will kill you if you keep doing it. And I was like, yeah, don’t worry about it. That’s a problem for Bill in the future. It’s not a problem for Bill today. However, Bill of the future had a bloody brain and…

a brain AVM bleed in his head. that became a 37. Really, that became a problem for Bill. Now. And I was smoking from about the age of 13, something like that, on and off. And my friend was telling me that from probably the age of 17, 18, 19, 20, 21. It didn’t take a lot of years to get to 37 and then be experiencing

you know, negative impact of a health situation. And I realized that I’ve got to make some massive changes. And obviously, to me at least, it was the most obvious thing that I have to give up smoking. Also alcohol, even though I wasn’t an alcoholic, I had to stop drinking alcohol. And now I very, very rarely drink alcohol. Even 13, 14 years past the first bleed, I very rarely have an alcoholic drink.

⁓ So it’s amazing what came to my mind. I immediately knew the things that I had to change. No one had to tell me, ⁓ well, since you’re ⁓ having a stroke, since you can’t walk properly yet, since your left arm doesn’t work correctly, why don’t you think about fixing this, changing that, doing this, doing that? No one had to tell me. Inside of me, instinctively, I knew

what I was doing that was not supporting me, was not supporting my mission in life and my goal in life. And it was the easiest thing to change. ⁓ I did receive some help though. I didn’t do it alone, right? So I had a counselor, I had a coach, a life coach. ⁓ I sought out the wisdom of people that were older than me, smarter than me, know, been on the planet longer than me whatever.

And I did it together with other people, not just on my own, because change is not very easy, especially when you remove an old habit and then you have to replace it with something. Initially, replacing it with something feels a bit strange and you don’t know if it’s the right thing that you’ve replaced it with and how that’s going to look like in six months or 12 months. So that’s what I found was that in order to help me find the right things to replace the things that needed to be left behind.

I needed to seek the support of other people, counselors, coaches, et cetera. Did you have some support in that part of your recovery so that you can kind of make sense of all the changes that were happening in your body, in your emotions and in your life?

Jonathan Arevalo (35:15)

And they do this within all of Canada. And also through Heart and Stroke as well, which is another nonprofit organization, Heart and Stroke. So both of them, would do this virtually where I would seek support to talk to someone based on what I’m going through, my thoughts, my emotions, and also telling my story.

And from that moment, I said to myself, I want to do the same. I want to give back to the community and to other survivors. So I ended up becoming a volunteer. And for the past three years, I’ve been a volunteer at ⁓ March of Dimes and also Heart and Stroke, where I ended up becoming an advocate.

for both nonprofit organizations. And you can also see me on their website on both of them where it tells my story, but also the fact that I volunteer helping out people from the ages of 20 to the ages of 80 years old in two languages now. So I do it in English and Spanish. And it feels really, really good. It really does.

Bill Gasiamis (37:09)

You know, it’s a very important part of, well, why did this happen to me? I don’t know. You could come up with a lot of negative reasons why something bad happened to you, but what am I going to do about this? And how can I transform this in a way that can help other people? Well, that is a better question to ask. And then volunteering is the best way to do that. I volunteered probably from 2013 through to about 2019.

we are aligned in our mission to support others and make a difference and not to make it just about us because that’s a really difficult thing to ⁓ do is you you become anxious and depressed when you just make it about yourself so making it about other people’s stops that thinking pattern ⁓ and I just love the journey that you’re on because you’re very early on in the journey and I can see it’s going to continue ⁓ to be that kind of

meaning making journey. I found that I said that I discovered my purpose after the stroke. Now you would have thought that somebody who was married had two children, had plenty of purpose in their life, plenty of meaning. Why do I exist for my children? To support them, to teach them, to make them great men, to ⁓ give them the opportunities in the world, in the community, except

They move out of home eventually, and then they become independent. And then your purpose and meaning has to shift. It cannot just be about them. You can include them in your purpose and meaning because you love them, they’re your children, et cetera, in my case. But, you know, they don’t need me now to be the guy that shows them the way of the world and…

educate them and prepare them and all that kind of stuff. They are doing it on their own. When they do need me, they come for five minutes or 10 minutes. We have a conversation and they’re done. So it’s important to shift that energy that I had as a parent to other people who need support in the early days of their experience when they have a negative health experience so that we can help guide them through

that adversity and overcome and then maybe grow and be a better version of themselves in a few years down the track.

Jonathan Arevalo (40:41)

to be a man of righteousness, where he shows a good example through his good actions, but not only through words, but through actions, right? Because sometimes we may speak and say a lot of things, but we don’t live it. But when you live it, it makes a huge difference. And whenever we show those examples, whether it’s…

to anyone, any family members, strangers, or anything like that. We need to be like that everywhere we go. And that’s something that I’ve learned a lot, that we need to be a good example to anyone.

Bill Gasiamis (41:47)

Jonathan Arevalo (41:59)

I had one of the pastors being my mentor ⁓ for a year and a half, and he ended up helping me out a lot. And it was a big amount of support that I received also from my dad and my mom and my sister. So I always had ⁓ a close family support. Yeah.

Bill Gasiamis (42:54)

communities who come forward, support them and give them ⁓ the things that they need to kind of get them settled and in some kind of routine where they can continue recovery in their own way. ⁓ But there would have also been hard times, right? Where, because most people, and on my podcast, we talk about all the amazing things that stroke survivors do and they overcome, et cetera, but there’s also a…

really, really hard times. I went through what I would call rock bottom moments, found myself in the abyss. Did you find yourself there at all? Had you experienced kind of that really down negative part of stroke ⁓ in your mental state and your emotional state as well?

Jonathan Arevalo (44:09)

helped me a lot to kind of take away those negative thoughts. And also getting into the church where I had support with the pastor. And then myself just changing my mindset where I had to start looking more into, more to God because I find it that without God we’re nothing.

And based on my faith, that’s what gave me the strength, the encouragement, and the joy that was taken away the moment I had my stroke. So my faith in God was what gave me the strength and gave me the encouragement to move on forward.

Bill Gasiamis (45:31)

We have to put our kind of our life in the hands of other people. That’s what we’re practicing for people who don’t have faith in God or who don’t have a God or don’t believe in God. You still have to practice faith and you practice faith every single day. ⁓ I wanna go and receive one of my medications. You have to have faith in the medication that is going to work for you and it’s going to actually do the job.

that it’s meant to do. Keep your blood pressure down, for example. I’m on blood pressure medication. ⁓ When I drive my car, I have to have faith that the other person is gonna stay on their side of the road and they’re not gonna come on my side of the road. And you know, 99.999 times out of 100, that’s exactly what happens. know, ⁓ when I have, when I’m driving the car, once again, I have to have faith that the lights that I stop at are going to, in fact,

when it’s red on my side, it’s going to be green on the other side. And at some point it’s going to switch and it’s going to go green on my side and it will definitely go red on the other side so that we don’t collide. You know, there’s faith. We practice faith all the time throughout our day, throughout our whole life without even really knowing it and without needing to practice faith in a religious way. ⁓ And that’s what I’ve kind of got out of my whole, my whole journey is

I didn’t find God so much in that I see God differently these days. I kind of believe that God is me. I am God, God is within me. So when I request a solution, if I use the word God in the sentence, God guide me to find the answer to this difficult question, what I’m actually doing is I’m having an internal conversation with myself.

And I’m asking myself, my unconscious self to guide me to find the answer in this particular way. And that way I can combine God, the non-religious version of God, we’ll call it spirit or our creator or whatever you want to call it. And I can embody that and then make it part of me. And then in the right context, I can access

the wisdom of God, the creator, nature, whoever, and I can be guided instinctively to follow my gut to an answer. And then if I go down a particular path that was not that way, and I find the wrong path, I can redirect, go back in, redirect and go again. So I became

I suppose more, maybe the word is spiritual, it’s probably not the right word, but it’s how I kind of practice my, what you might call connection to God and faith. That’s how I practice it. How does that sound to you?

Jonathan Arevalo (49:08)

and all that, that’s God who does that. there was this, the other day I was reading and it’s ⁓ in the Bible in the book of Isaiah, who’s a prophet. And it was based on the story of a king and the king is his name is Hezekiah. And Hezekiah had an illness, but not only that, it said, actually, can I read it in?

in a second. So it says in his book that

It says in Isaiah 38, it says, In those days, Hezekiah became ill and was at the point of death. The prophet Isaiah, son of Amoz, went to him and said, What is what the Lord says? Put your house in order, because you are going to die. You will not recover. Hezekiah turned his face to the wall and prayed to the Lord.

Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes. And Hezekiah wept bitterly. Then the word of the Lord came to Isaiah. Go and tell Hezekiah, this is what the Lord, the God of your father, David, says. I have heard your prayer and seen your tears.

I will add 15 years to your life and I will deliver you and this city from the hand of the king of Azariah. I will defend this city. This is the Lord’s sign to you that the Lord will do what he has promised.” So when I read that, I said, wow, how amazing God is that not only does he give promises to either

kings and all of that during 2000 years ago in history and how God is still faithful to each one of us. Why? Because each one of us have a purpose and because God has created us with purpose is the reason why his love and mercy is so great. And that’s why I’m thankful for it I know that God is faithful and because his faithfulness

He’s given me a second opportunity to live.

Bill Gasiamis (52:16)

Jonathan Arevalo (52:21)

Bill Gasiamis (52:28)

So what about before stroke? Were you somebody that knew the scripture? Were you somebody that ⁓ had that type of connection to the word?

Jonathan Arevalo (52:47)

Bill Gasiamis (52:51)

Jonathan Arevalo (52:53)

Bill Gasiamis (53:05)

I agree with that.

Jonathan Arevalo (53:09)

through the creator, which is God. And that’s the only way that you can actually be molded to the righteous man of who God has created in us. But we just need to know how to find that. And that way is through His word. His word teaches us that. And the moment that we apply that to our lives, day by day, the same way like with our health, our sickness, our weakness, our insecurities,

How can we change that? We can only change it the moment that we apply it into our lives, little by little. And through that is the moment that we can see transformation and a step of moving forward and also breakthrough. Breakthrough is only done through changing our old selves. Because our old self is very hard to break, because we still carry that.

Bill Gasiamis (54:35)

left arm, right leg won’t work again, then there’s people who will pass away. And then some of those people find that they’ve been harshly treated by God, by their maker, their creator. How do you talk to people like that to make them feel like it’s not personal? God, your creator, your maker has not gone after you and ⁓ is not punishing you.

Like what do you say to people who lose connection with spirit, with God, with their creator?

Jonathan Arevalo (55:40)

is because everything comes from sin. And sometimes it’s hard to say, why is this happening to me? Or why am I not getting better? Well, everything goes back to sin. And because until we kind of, until we accept Jesus Christ, but not only accept Jesus Christ, but at the same time, God allows certain things

that we have to go through. We have to go through certain challenges or obstacles, right? But it’s really hard to say. I find it. Maybe to answer that question.

Bill Gasiamis (56:47)

I actually don’t mind the word sin when you use the word sin, because I’ve recently discovered ⁓ some people’s meaning of the word sin is to take that an incorrect aim to aim in the wrong direction. And I really relate to that. So when I sin, I don’t kind of see it as a, ⁓ you good, me bad. Like, do you know, don’t, I don’t sort of see that type of thing. It’s just aiming in the wrong direction. For example, previously my life was

led by my head. It was my head that was telling me this sounds like a good idea. Yeah, we should have three cars. We should have the biggest house possible. We should do all of that. My head was guiding my life, whereas now my head is supporting my heart to guide my life. That’s why the podcast exists, because the podcast is not about what my head thinks is a good idea. Because if my head thought it was a good idea, this podcast should be making

a shitload of money and it’s not making a ton of money. That’s why I request support from Patreon. That’s why I wrote a book to make a little bit of money so that I can ⁓ cover the costs of recording, editing, uploading, hosting a podcast. Like that’s the reason why it needs to make money, but it doesn’t need to make hundreds of thousands or millions and millions of dollars. My head in the old days would be going, dude.

Don’t ever do 400 episodes of stroke survivors podcast. I’m not interested in that. And I, and I would be going, okay, what do I need to do? And my head would be going, you need to 24 hours a day, seven days a week and make as much money as you can. So you can have all the things that we’re told by the marketing companies that you need to have. I see that as a sin. Do you understand? That is the wrong aim. I’ve taken aim.

dude and I’m putting all my energy into the wrong things. Whereas now I’ve taken aim and adjusted and now I think I’m aiming in the right direction. It’s about purpose, meaning, connecting with other people, helping other people, supporting other people. I’m no longer sinning in that particular way. That’s the literal description of the word sin. So it’s really important that

I learned that because if I didn’t learn that I would be taking when I hear the word sin as a me bad, everyone else good. And that’s definitely not what it is. And that’s what I think the, the bleeding in my brain helped me adjust the aim, redirect where I was heading in my life, who was important, why they were important to me. ⁓ and, and my community is not a church.

but I’m creating my own community on this podcast, know, 400 interviews, people who reach out from you all around the world. It’s the same kind of community, giving community as a church community is. We support each other, we help each other, we give people information, we connect other people with ⁓ doctors and conditions and solutions. So it’s like, yeah, that’s what I was lacking. I was lacking community.

Jonathan Arevalo (1:00:01)

Bill Gasiamis (1:00:02)

Jonathan Arevalo (1:00:23)

Bill Gasiamis (1:00:25)

Jonathan Arevalo (1:00:39)

which is what shows purpose and also can leave an impact to others, survivors. Because if we don’t show a difference and if we don’t help support other people, then what purpose do we have on this earth? Right? We’re here to help one another and to be different in a good way.

Because every single time we’re always going to be going through different challenges. Whether it’s negative thoughts or everything that we see on TV. Because every single time that we’re looking at the news is always bad news, So all those negative thoughts are something that we are affected day by day. And the only way that we’re able to overcome those negative thoughts is by

putting ourselves surrounded in other things. Other things that can help us strengthen our mind, our body, and emotions. But that’s something that takes day by day.

Bill Gasiamis (1:02:14)

and despite it all are seeking transformation and growth. And that’s the first part of the dedication. And the second part of the dedication says to my family, I hope that that I have set a good example. I mean, my only goal, my only goal is to set a good example, to show them when adversity comes, how you can respond. There’s a

Jonathan Arevalo (1:02:59)

Bill Gasiamis (1:03:10)

like is the example that we need to set for other people just so that my kids can see in the future when they go through a tough time, they go, I think I remember one way that my dad did it that might be supportive of my recovery down the path and see, okay, this is what dad did. I don’t need to do what dad did, but this is kind of how he thought about that and how he approached that. That’s really.

what I was sitting out to achieve. And I think I’ve achieved that and I feel really good about that, you know.

Jonathan Arevalo (1:04:17)

They’re going through difficult times and I think that’s amazing.

Bill Gasiamis (1:04:52)

So as we kind of get to the end of this interview, tell me what’s next for you. What’s on the to-do list? What goals do you have that you want to achieve?

Jonathan Arevalo (1:05:31)

Everything changed. And so I got married on April 11th of this year. So I’m now married. And the other thing that I started this year was besides the volunteering, I also created ⁓ my own like small business when it comes to mentorship to help other people, which are people that are either stroke survivors.

People with disability and also mental health. And I created my website on that to help a lot of people. And it’s ⁓ non-profit at the moment, which is donation-based. And I’m still helping in the community. I still volunteer. And I still ⁓ help out in the church and many other places.

So those are the things that I’m still currently doing.

Bill Gasiamis (1:07:02)

Jonathan Arevalo (1:07:28)

Bill Gasiamis (1:07:51)

Jonathan Arevalo (1:08:14)

Bill Gasiamis (1:08:17)

meaningful ones. If this episode helped you feel understood or gave you something to think about on your recovery path, remember to visit patreon.com/recoveryafterstroke. Some people believe their support won’t make a difference, but that’s an assumption that simply isn’t true. Every contribution helps me continue producing these episodes, keep them online and moving toward my goal of recording a thousand conversations. So no stroke survivor ever has to feel like they’re going through this alone.

And if you haven’t already, you can also order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Many listeners expect it to be just my personal story, but it’s actually something much more useful. It’s the guide I wish existed when I was confused, overwhelmed, and trying to figure out how to rebuild my life after stroke. Thank you again for being here, for listening, and for supporting the work in whatever way you can. You’re not alone in this.

and I’ll see you on the next episode. 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 Gassiamus. 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. 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.

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The post Hemorrhagic Stroke Patients Recovery: Jonathan’s Remarkable Journey appeared first on Recovery After Stroke.

When people think of a stroke, they often imagine the classic symptoms — facial drooping, slurred speech, or one-sided weakness. But the basilar artery, which feeds the brainstem and cerebellum, behaves differently. When it blocks, symptoms can be subtle at first, then escalate with terrifying speed.

That’s what happened to 28-year-old triathlete Daniel Coggins, who went from finishing a morning run to collapsing on the bathroom floor within minutes. His story highlights the symptoms many people miss, the dangerous delays that can happen in emergency care, and the critical signs every family needs to know.

The basilar artery is one of the most vital arteries in the brain. It supplies blood to areas responsible for coordination, balance, vision, swallowing, and consciousness.

When this artery becomes blocked — called a basilar artery occlusion — the results can be catastrophic. It’s one of the deadliest, most time-critical forms of stroke.

Common symptoms of basilar artery occlusion can include:

• Sudden dizziness or vertigo
• Severe imbalance
• Double vision or blurred vision
• Sudden headache
• Slurred speech
• Sudden collapse
• Limb shaking or full-body thrashing
• Loss of consciousness
• Difficulty swallowing
• Nausea and vomiting

Daniel experienced several of these in rapid succession — and like many young, fit people, he had no idea they pointed to one of the most serious neurological emergencies.

Daniel’s day started the same way many active people begin theirs: a run with his wife. They jogged four miles, felt good, and returned home.

Then everything shifted.

After his shower, Daniel suddenly felt the room spin violently. He sat down on the toilet, trying to regain balance — but within moments, his body began thrashing uncontrollably. All four limbs were seizing, yet he remained conscious enough to call his wife for help.

Within minutes:

• He could no longer hold himself upright.
• He lost all strength.
• His speech began to deteriorate.
• His body became a “dead weight.”

These symptoms are classic for vertebrobasilar stroke, but because they can mimic dehydration, vertigo, heat stroke, or even a seizure, many survivors — and medical staff — don’t immediately recognise what’s happening.

Even when paramedics arrived, they suspected dehydration or heat exhaustion.

At the hospital, Daniel sat in the waiting room — actively deteriorating — because his symptoms didn’t fit the stereotypical stroke picture.

This is far more common than people realise.

Basilar artery strokes can be missed because:

• They often don’t involve one-sided weakness.
• They may begin with dizziness, which is easy to dismiss.
• Motor activity (like thrashing) can look like a seizure.
• Young, healthy people are often assumed to be “low risk.”

But as Daniel’s story shows, healthy, athletic people can and do experience severe strokes.

Once he was finally assessed, everything changed.

Scans revealed a large clot in the basilar artery. Without immediate intervention, this type of stroke can lead to brainstem compression, coma, or death.

Doctors acted fast:

• They performed an emergency clot retrieval.
• Hours later, they noticed severe swelling in his brain.
• A nurse practitioner pushed for an earlier scan — a decision that saved Daniel’s life.
• He was rushed for an emergency craniotomy, removing part of his skull to relieve pressure.

The entire left cerebellum had been damaged beyond recovery.

Daniel was placed in intensive care for two weeks, and his memory of the early days disappears almost entirely, a typical experience after severe cerebellar injury.

Daniel’s case highlights a critical problem:

Many people don’t know the early signs of a vertebrobasilar stroke.

Typical early symptoms include:

A major red flag, especially when paired with nausea or imbalance.

Because the cerebellum is involved, clumsiness, staggering, or sudden unsteadiness often appear early.

Thrashing, shaking, or seizure-like activity is more common than most realise.

This can happen without warning.

Even without facial droop.

Changes in awareness should be treated as an emergency.

If someone experiences even one of these symptoms suddenly, especially after exertion or illness, it’s time to call emergency services immediately.

Daniel entered rehab with significant deficits:

• He couldn’t swallow.
• He couldn’t walk or stand.
• His speech was severely slurred.
• His left hand and arm lost fine motor function.
• His emotions were hard to regulate due to cerebellar damage.

Yet he kept going.

Months later, he returned to hiking — even completing a 2,000-ft elevation trail. He completed a triathlon relay, swimming the opening segment. He returned to work and leadership roles within his community.

The cerebellum’s plasticity is remarkable, and Daniel is living proof of how far survivors can come — even when early scans look devastating.

Basilar artery strokes are rare but extremely dangerous.
Early recognition is everything.

Daniel’s story is more than a medical case — it’s a reminder that:

• Not all strokes look the same.
• Young, fit people are not immune.
• Dizziness + collapse is a stroke until proven otherwise.
• Advocacy from nurses, partners, and family saves lives.
• Recovery is possible, even after severe cerebellar damage.

And for anyone experiencing the uncertainty and fear of early recovery: your story isn’t over.

“Basilar artery strokes don’t always look like strokes.
But when they’re missed, the consequences can be devastating.”

Daniel’s experience shows why early symptoms like dizziness, collapse, or limb thrashing must be taken seriously. Every survivor who learns the signs helps protect someone else.

And every story shared helps another survivor feel less alone.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Daniel’s basilar artery stroke changed everything, yet what he discovered about faith, healing, and resilience may surprise you.

Support The Recovery After Stroke Podcast on Patreon

Highlights:

00:00 Introduction and Background
04:05 The Day of the Basilar Artery Stroke
10:31 Emergency Response and Hospitalization
14:18 The Impact of the Stroke
22:08 Learning to Accept Help
27:40 Personal Growth and Reflection
38:02 Finding Peace Amidst Chaos
43:12 Navigating Emotional Challenges Post-Stroke
51:31 Finding Purpose in Pain
56:40 Heightened Emotional Sensitivity as a Gift
01:02:01 Sharing Stories and Raising Awareness
01:12:53 Life After Stroke: Embracing New Beginnings
01:15:52 Advice for Stroke Survivors
01:20:03 The Dichotomy of Support and Loneliness
01:25:36 Celebrating Progress and Achievements

Transcript:

Bill Gasiamis (00:00)
Hey, it’s Bill. Before we dive in, I wanna say a heartfelt thank you to everyone who supports the show on Patreon. After more than 10 years of producing, editing, recording, your support genuinely helps me keep this going for the survivors who need hope the most. A huge thanks to everyone leaving comments on YouTube, listening on Spotify or Apple, and to those of you who picked up my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Every review, every share.

every message it all helps more survivors discover this podcast. Today’s episode is a powerful one. Daniel Coggins was 28 feet healthy and fresh off a morning run when the room suddenly spun. His limbs began thrashing and his body dropped. What followed was a basilar artery stroke. One of the most catastrophic types there is. His wife, his faith and early decision from a nurse practitioner

quite literally saved his life. If you’ve ever had symptoms that no one took seriously or felt like your stroke didn’t look like a stroke, this episode will really speak to you. Let’s get into it. Daniel Coggins, welcome to the podcast.

Daniel Coggins (01:13)
Thanks so much, Bill. It’s great to be with you.

Bill Gasiamis (01:15)
What

was a normal day like for you before stroke?

Daniel Coggins (01:19)
Yeah, so before I had my stroke, I had my stroke in July of 2023 and I was 28 years old at the time. And before my stroke, I was a pretty active individual. My wife and I, we enjoyed kind of long distance fitness activities. So we would, we had done a couple triathlons about three to four months before my stroke. had done half marathon running. ⁓

Yes, we really enjoyed fitness activities. We were big hikers. ⁓ These are all kind of free time activities. And then, you know, I had a job, so I worked prior to the stroke. But yeah, average day was, you know, somewhat active for the most part, at least on a weekly basis. And those were some of the activities that we did.

Bill Gasiamis (02:12)
Sounds like that was a bit of the passion, you guys walking triathlons, climbing probably ⁓ all sorts of things by the sound of it.

Daniel Coggins (02:21)
But yeah, we’ve always enjoyed those. We enjoy going to the national parks and hiking trips. That’s generally how we kind of fashion and organize vacations that we’ve taken over the years. ⁓ So that’s always been one of our favorite things to do.

Bill Gasiamis (02:37)
What did you believe about your health back then?

Daniel Coggins (02:40)
You know, if you’d asked me, I would have thought I’m pretty healthy, 28 years old. You know, I wouldn’t say I was like a health nut, if you will, but I was healthy for all intents and purposes and felt like I was doing the right things, you know, eating pretty right, pretty right. And exercise, taking care of myself the best that I could. So yeah, I would have said that I felt like my health was good.

Bill Gasiamis (03:06)
Yeah. Were there any signs that there was kind of anything wrong? You know, some people I’ve got this, I haven’t dealt with, or, uh, I have to, should go to the doctor for that, or I haven’t been to the doctor for that. Was it anything like that on

Daniel Coggins (03:21)
No, for me, for me, there was, there was just about, this was about as freak of a event that I think you could, you could have to an extent. ⁓ now very, very perhaps unrelated. I did have migraines, but those were seldom, right? Those were not debilitating. They were often, I would have, ⁓ migraines every couple months. You know, they’d kind of make me have to rest, lay down. ⁓

get out of the light for a little bit, but then pretty quickly I would be able to get right on past it. And it was not something that was recurring on a super regular basis for me.

Bill Gasiamis (04:02)
Hmm.

Daniel Coggins (04:03)
But yeah, that pretty out of blue.

Bill Gasiamis (04:05)
What was the first sign that something wasn’t right?

Daniel Coggins (04:08)
Yeah. So I’ll kind of walk you through the story. I actually have a really good memory of that first day. but, uh, so my wife and I, we, it was a July morning. So where I live here in North Carolina and the U S it’s, you know, hot and humid that time of year. And, um, and we’d been out on a job that morning. We’d gone and ran like four miles before work together. And that was pretty usual. That was standard for us. You know, that was an average.

good jog, good exercise, but nothing abnormal. So we did that run, that felt good. Got back to the house and I was preparing to leave for work. So I had showered ⁓ and then I’d gotten out of the shower, gotten dressed and I was about to brush my teeth, eat some breakfast and hit the road. And my wife had just gotten in the shower. And I’m in the bathroom.

about to brush my teeth and then just out of nowhere, the stroke hits and it was a feeling unlike anything I’d ever felt. You know, I had to sit down on the toilet just to kind of gather myself. The room was spinning uncontrollably. I had no idea what was going on. After a minute or so, then all four of my limbs started uncontrollably shaking and seizing up.

By this point, I was still able to communicate. I was kind of like, my wife is in the same bathroom taking a shower. I, Hey, you know, call out to her, have her get out. She’s dripping wet. She comes over and tries to kind of, um, just see what’s going on. And all four limbs are like thrashing about uncontrollably, but I’m still able to talk and communicate. And then after that occurred, then.

I lost, I lost just about all, ⁓ all strength in my body. So then I kind of slumped to the floor, my wife trying to make sure that I was in a better position. If I began seizing up again, she pulls me out of the bathroom because I can’t help myself at all at this point. And she drags me into the bedroom. She’s wanting to get me up onto the bed, but I’m too heavy and too unable to help for her to do that. So she pulls me into the, into the bedroom.

and I’m laying there and she’s obviously very concerned. ⁓ and then paramedics come out at first, they think it’s just really severe heat stroke or dehydration. ⁓ but it was clearly not that, ⁓ but, yeah, was, it was quite, quite jarring, quite, quite jarring several minutes. ⁓

and honestly crazy that I can still even like recollect and remember some of those first moments.

Bill Gasiamis (07:13)
What went through your mind as things began to escalate?

Daniel Coggins (07:16)
You know, I didn’t even have that many thoughts, honestly, in the moment, because it was just, I was starting to lose my mind. But I think I knew it was very serious. think I knew, I don’t know what this is or what’s happening, but this is clearly not just like a, you know, I feel a little faint or I’m a little dehydrated. I need some fluids. I need some electrolytes, that kind of thing.

I think I could tell pretty quickly something more is going on here for me.

Bill Gasiamis (07:49)
Often when I speak to stroke survivors who have strange things happen to them will tell somebody about it their partner or whoever’s nearby and the person will go ⁓ Stop playing around stop messing about Why are you doing that for? Your wife was she at all suspicious at the beginning did she think maybe you’re just playing a trick on her or did she just completely move into? support a help mode

Daniel Coggins (08:20)
No, she pretty quickly moved right into the kind of the help mode. I think she heard the tone of my voice when I was calling out for help. And I think she just knew like, he’s not messing around. Like this is clearly something pretty serious. And then when my leg started seizing up uncontrollably, then by that point she definitely was, hey, something’s happening, something’s going on.

Bill Gasiamis (08:47)
dragging you from your arms, from your legs, how far does she have to drag you to get you somewhere out of the bathroom?

Daniel Coggins (08:54)
Yeah, to get out of the bathroom, she dragged me, not, she got as far as she could. Um, we have a pretty small house. like it was maybe 10, 15 feet max. Um, but that was about as far as she could do to get me out since I was unable to do anything. And then even the paramedics, when they come up, they came, they were even like, Hey, can you help? They were talking to me and asking me to like help when they were trying to get me up and get me on the gurney. And, um, my wife was like,

He cannot do anything. Like he has no, he has no strength. Like he cannot help you or bear any of his own weight at this point. Like you’re going to have to fully lift him up.

Bill Gasiamis (09:36)
Well, they’re dealing with a dead weight.

Daniel Coggins (09:38)
Basically,

Bill Gasiamis (09:40)
Yeah. Is there something, are you doing the whole, this can’t be happening? What’s going on? Are you thinking any of those types of things? How do you take it when these people turn up? a dead weight and you have no ability to, ⁓ what’s the word like to support them in their requests or to provide them what they need with their request.

Daniel Coggins (10:06)
Yeah, mean, I was just, totally, my mind was just like, wow, I, I’m, something’s going very wrong and I need help quickly ⁓ because clearly I cannot do anything to like support myself or help myself right now. So yeah, I could tell something was quite severe when it would, as it was happening and as it was playing out.

Bill Gasiamis (10:31)
Mm-hmm. Are you generally a cool, and collected kind of guy?

Daniel Coggins (10:36)
Yeah, yeah, I’m generally, yeah, for sure. You know, think perhaps externally, but then, but then in my mind, I was not, but then, but then over the course of the next couple hours, as they got me to the hospital and then I was admitted and then they coded me for stroke, they then pretty quickly, then pretty quickly from there, like I just kept losing more and more memory and ability to cognitively like stay engaged.

Bill Gasiamis (10:39)
Did you remain cool, calm and collected?

Daniel Coggins (11:05)
in the situation. ⁓ So. ⁓

Bill Gasiamis (11:10)
So it started to escalate. The deficit started to kind of creep in after you were at the hospital.

Daniel Coggins (11:16)
Yeah, yeah, so I got to the hospital and this part was actually kind of crazy. So they admitted me into the emergency room waiting area. I had been taken to the hospital in the ambulance and my wife had driven actually behind us in our vehicle because they told her, hey, I think he just needs fluids. I think we just need to, ⁓ you know, give him some electrolytes and he’s going to be all good. ⁓

So they said, Hey, I think you’re going to go home in a couple hours. So you might want to drive behind us. So have a vehicle. So she did that. They got to the waiting room and they did not admit me immediately because they didn’t know what it was. And they didn’t, they didn’t think it was a stroke. So I’m going to, I’m in a wheelchair. And then a few minutes past, my wife comes in, she goes up to the desk and asks the person, Hey, where’s Daniel Coggins gone? And at that point I’ve not been admitted yet. I was sitting in the waiting room.

losing strength, losing the ability to hold myself up. was kind of slumped over in the wheelchair and I was just continuing to decline. So I sat there probably, I don’t know how long, because I kind of lost track of time at that point, but for some time I was sitting in the waiting room, not being treated or seen by a physician. But then once they got me back into a room,

very quickly, were able to code me for stroke and they found that the basilar artery had a huge clot in it and ⁓ they knew that what needed to be done to help bust up the clot and restore blood flow to the cerebellum.

Bill Gasiamis (12:59)
Do they have a, well, perhaps they didn’t at the beginning, but do they have now an understanding of what it was that caused the clot? What was the underlying cause?

Daniel Coggins (13:10)
No, so at this point we’ve done a ton of work ups with physicians and all that. We’ve done stuff with hematology, cardiology, genetics. To this point, is no, there’s no known cause of the clot. The only thing that will not be fully provable, but then may have had some sort of cause was about a week, about two weeks before the stroke, I was really sick and I was sick with the COVID.

like illness and I was kind of down and out for several days from that illness and they can’t prove, right, that that’s what it was. But that’s the only thing in the span of those several weeks leading up to the stroke that was abnormal health-wise for myself.

Bill Gasiamis (14:01)
Yeah, bit of a smoking gun, but you never really know.

Daniel Coggins (14:04)
Right, right. But yeah, they found nothing. They found nothing through all their testing over the last couple of years ⁓ to this point.

Bill Gasiamis (14:13)
Yeah. So how long did you end up spending in hospital?

Daniel Coggins (14:18)
Yeah, so that first day, so I was there, this is July 19th of 2023. So I was admitted into the emergency room. They did emergency surgery to bust the clot. Then my memory begins to be much more hazy. Ultimately, I was in the ICU for two weeks and then I went to a step-down unit for two weeks and then I went to a…

rehab hospital for four weeks. And the journey, so all in all, that’s eight weeks, I guess. But the journey, while I was in the ICU, I was out of it for all of this, right? So I don’t recollect ⁓ what happened to me really, but obviously I had friends and family that were able to fill me in after the fact. And I had lots of different things, so.

One thing in the first, think, 24 hours that was really significant was once they busted the clot, then obviously kind of the goal there from what I understood was to control the swelling and to see what the swelling was doing in my brain. they typically, I guess, were planning to do a MRI or a CAT scan around 6 a.m.

the day after the stroke to kind of assess it and see where things were at. But the nurse practitioner that I had that day, she decided to pull forward that ⁓ MRI or CAT scan by several hours, which then, so they took me down, they did that and identified that, the swelling is pretty significant, pretty severe, and we need to create space for the swelling. We need to do craniotomy. ⁓

in order to have the space for the brain to swell so that the brain doesn’t just compress into the brainstem and then perhaps it’ll be fatal from there. So ⁓ they did that and then they had me do an emergency craniotomy where they cut away a piece of the skull back here on my left side, ⁓ which ultimately saved my life because had they not done that, I don’t think the brain…

would have had enough space to swell because it wasn’t a small stroke for me. The entire left cerebellum is now completely dead for me. ⁓ So my right cerebellum, I think, was very minimally impacted. But the left cerebellum, I guess, due to the clot, the place of the clot and whatnot, the left cerebellum lost blood flow for enough time that the left cerebellum is completely dead at this point.

Bill Gasiamis (17:10)
Dramatic.

Daniel Coggins (17:12)
Yeah. Yeah. Yeah. No, when I heard all that afterwards, it was, it was something and it was a very long, very long journey from there because then I was, I was intubated two times while in ICU. I was told that I had pneumonia at one point while I was in there. And then very, very slowly over the course of those next eight weeks and, and into the future. Very slowly, I began taking steps of progress and.

healing and improving over time.

Bill Gasiamis (17:45)
So what deficits were you dealing with when you joined rehab?

Daniel Coggins (17:49)
Yeah,

so four weeks in when I went to the rehab hospital, I couldn’t eat. So I couldn’t swallow. couldn’t, I could talk, but it was very, very slurred. I had lot of dysarthria. I could not stand. I could not walk. Sitting even was challenging. Laying was really about the only comfortable thing I guess I could do at that point. Cognitively, I was…

Impacted as well that came back the most quickly just my cognition. And my ability to think pretty well. ⁓ So that came back most quickly. ⁓ Occupationally like left or fine motor left side left sided effects. So I do a lot of things one handed now. So left side a lot of. Weakness and inability to have, you know. ⁓

to do fine motor tasks and things that require coordination and all that kind of stuff with my left side, particularly my left hand and left arm.

Bill Gasiamis (18:57)
and any sensitivity in the skin in the way that it feels.

Daniel Coggins (19:03)
No, that’s something that some other folks have asked me as well, but no, in terms of sensitivity, heat, cold, touch, I might be a little more sensitive now to heat and cold, but nothing dramatic. Sensitivity and to the touch, it’s all about the same for me.

Bill Gasiamis (19:25)
28 and now you’re dealing with all of that stuff. Your wife as well. What’s family life like at that point? How do you guys go about getting through those eight weeks? Imagine your work obviously is notified. You’re not going there anymore. Your wife is to and from work. How is she dealing with it?

Daniel Coggins (19:48)
fantastic

through this entire thing. ⁓ She didn’t work for a couple weeks. Her work was really cooperative. I was out of work, obviously, for quite a while, about nine to ten months, all in all. ⁓ But she was there throughout, and she was at the hospital for a lot of it, and she was amazing just in terms of, ⁓ you know,

coordinating and having other friends and family come in to help as well. We have a great community of friends and family around us where we live. So they were, they all showed up. I didn’t spend one night alone those, all those eight weeks. So I had somebody stay with me for all eight weeks so that I had somebody nearby and with me, which was unreal.

Bill Gasiamis (20:40)
Wow, man.

Daniel Coggins (20:46)
We really saw people show up. We have a really strong church community and they, by all means, they were there. They showed up. Being my wife, she was a trooper. mean, there was several very dark moments where it looked like I might not make it and doctors were unsure of where things were headed. Especially at one point, they thought that I may survive, but I would have brainstem impact and maybe be…

you know, live, not have a lot of ability to do much. ⁓ and so there were some really dark moments that obviously did not happen, but, ⁓ there were some moments for sure throughout where she was, you know, she was right there throughout all of it and not knowing where things were going to go. Not sure how things were going to play out. but she was steady and present and right there by my side.

Bill Gasiamis (21:45)
Amazing. Are you the type of guy that doesn’t mind accepting help or you’re fiercely independent? What’s it like to go from being totally independent, somebody who is very active, ⁓ never probably needed anyone to help them with anything and then all of a sudden you need everybody to support you. How do you cope with that ⁓ transition?

Daniel Coggins (22:08)
Yeah, I, ⁓ that’s actually been one of my biggest kind of things I’ve learned through this is just how I guess our independence that a lot of us have or think that we have is in a lot of ways, actually in some ways it’s a mirage and, ⁓ this situation in my life really taught me that and taught that I’m not as independent as I think I am. I’m not able to do as much as I think I am. And I am truly dependent on

people around me. ⁓ So it wasn’t easy, you know, walking through that and learning to lean on people and depend on people ⁓ for everything that most things at that point. less stuff now, but early on I was dependent on people for everything. So not easy to do that, but I think it really just taught me that, you know, I…

I do need people in my life and I do depend on others for so many different things. And I’m not as independent as I might think that I am or might like to be.

Bill Gasiamis (23:16)
Isn’t it interesting? Like that’s the whole purpose of church amongst other things. That’s the whole purpose of a football club. That’s the whole purpose of a interest group. That’s the reason why people meet up. It’s so that you can have a community of people that you have common interests with, but also you have the opportunity to say, Hey, can you help out? Or do you need some help? Can I offer some help? I imagine that being you and from your type of

background and with your ⁓ community at church, you would have been helping people all the time. You guys would have been rallying around the community whenever they needed all the time. And now it’s flipped. Now you’re in that position and you’re finding it difficult. It’s a very interesting thing to contemplate, to think about.

Daniel Coggins (24:06)
Yeah, absolutely. mean, that was something I thought about often as I was kind of starting to recover, but I was typically always in, not always, but oftentimes I was in the position of the one giving and the one helping, the one contributing. And then I was just thrust into this position unexpectedly, didn’t ask for it, didn’t seek it out.

And just all of a sudden I’m in the position where I’m in, I have to receive. And I’m the one that needs the help. I’m the one that can’t do the things and I need other people to show up and help. And ⁓ to your point, yeah, like the, really learned and saw the church for me, be the church. And, you know, it wasn’t just this like group of people. ⁓

that maybe I had something in common with or that I saw on occasion or whatever, but they truly showed up and they showed out in huge ways. And they, they gave us, they contributed to help us financially. They showed up physically with, with meals and spending the night ⁓ spiritually to help support my wife, throw out all of it and support me. And they, they labored.

you know, in prayer and fasting throughout all of it and just being there and showing up in all those various ways and more throughout the entire thing. And I really saw for me, the church be something that I’d read about, right? Or kind of thought about maybe theoretically in my mind. And I experienced it very tangibly in a very real way in that scenario at that time.

Bill Gasiamis (25:49)
one way to be experienced to church as a church goer, as somebody who attends, you know, reads perhaps scripture, perhaps, you know, puts a helping hand over somebody and reminds them of something that they learned in church or whatever. It’s one thing to participate like that. And it’s another thing to participate in. I’m not sure if the right word is passive, like, but in a passive way where

you’re still experiencing church but from a completely different perspective.

Daniel Coggins (26:25)
Yeah, yeah, for sure. mean, for us in that scenario, like, it was either if we were going to take the passive approach, then there would have been no help. And if our church had taken the passive approach, if all of those people had just said, like, hey, I can’t help here, I don’t have the time or I don’t have the resources or whatever, then we would have been left on our own. And that’s where the passivity would have just

shown up, but that’s not what happened. And I’m super thankful to God. I’m super thankful to our community that decided, you know, we’re going to put this into action. We’re going to do something. We’re going to be present. We’re going to show up and be there.

Bill Gasiamis (27:10)
I feel like the religion and churches and things like that are kind of the way you go to prepare for life in a kind of a curious philosophical way. And then life happens and then you’ve got to put those skills that you’ve learned into action. Do you feel like you ⁓ handled that well that you put what you had learned all those years into action?

Daniel Coggins (27:40)
Yeah, I really do. It was actually kind of a little uncanny. ⁓ There’s this other kind of story I have that plays into this question, but two days before my stroke, I ⁓ was out doing some yard work at my house and I was listening to a podcast. And in this podcast, it was an interview between ⁓ one of my favorite pastors.

I’m here in the States. name is Tim Keller and he had actually just passed away. And this guy was interviewing him over the previous few years. And it was this like. Tribute basically to this guy that had just passed away and I was listening to this, this podcast and then these interviews, ⁓ Tim was being asked, like, Hey, he had actually just been diagnosed a couple of years previous with terminal cancer. And he was being asked, Hey, how are you approaching this?

and kind of what are you thinking about with this cancer diagnosis? And Tim’s response that I’m listening to a couple days before my stroke, Tim is responding back to the guy and he says, you know, actually, I was actually talking to God recently and I was asking him to basically put into my life whatever might be necessary in order for me to know God more and to experience him in a more full way.

And so I’m listening to this podcast. It’s really interesting to me in the moment. And I’m just kind of like thinking on that and just kind of considering it. And then lo and behold, two days later, I get the stroke. had a super life altering thing happen to me. Yeah. So for me, ⁓ I very much, you know, I was like, ⁓ I do feel like I was in some way, and form being prepared.

throughout my life, but then even specifically in those couple days leading up to the stroke, I do feel that I was being prepared for kind of what was to come, not even knowing that it was coming. And that all of the things I had learned and experienced and practiced in my faith journey, all of those things were kind of leading up to this moment where I was gonna either, you know, stay the course and figure this out or…

kind of move on and leave God behind. And obviously, given everything I’m sharing now, my story was that I did not leave God behind and that I have to the best of my ability with His help, I’ve stayed the course in that process. But.

Bill Gasiamis (30:25)
Do feel like there was a fork in the road moment? And maybe not deep down in your heart, but do you feel like perhaps you sensed it? I mean, this could be a moment I could go one way or the other here.

Daniel Coggins (30:38)
Yeah, I mean, I don’t know that there was one Fork in the Road moment for me. I think there was lots of Fork in the Road moments ⁓ throughout. But honestly, in so many of the moments, like early, early on where I’m like, my mind’s not even there, I’m drugged up on memory, you know, killers or whatever, I don’t know what they’re called, but I’m on all these drugs that are preventing me to have memory of what happened. And…

Because so many people in my community showed up in all of those days and in all of those moments, I think once I got to a point where like I was able to cognitively decide and, you know, think through a fork, I almost don’t even know that I had much of a fork because I think I had seen and heard about through people sharing with me.

that so many people showed up in all of those earlier moments in the journey that I didn’t even feel like I really had much of a choice. It almost seemed just like obvious that like I, of course I need to keep moving forward because all of these people have been here the past 14, 25, however many days they’ve been here throughout. Yes, it is contingent upon me to decide, but like,

These people have already been there and helped me in all of the harder moments. Therefore, the moments that lie ahead while they’re not gonna be easy, I think I just have to stay the course.

Bill Gasiamis (32:16)
Yeah. It’s very often I speak to people whose faith gets tested. You know, my faith didn’t really get tested, but I did kind of contemplate the possibility that this is all random, know, stuff happens to people. And that means that it’s not in God’s hands what happens. But then I also had the whole, but if, if I, if I embody the idea that

I am God or God lives within me or through me or whatever the word is, then I act according to some of the principles that I’ve picked up through my life, through my background, my religious upbringing. Not that I was very ⁓ religious and not that I go to church often, but still there’s plenty of things that kind of ⁓ have rubbed off. It’s like, then every decision that I make from

that perspective, if I take that on board as like I am ⁓ kind of, you know, one of God’s children, creatures, whatever it is, like from there, if I do the thing that I’m meant to do, which is ⁓ survive, fight for survival, fight to learn, to overcome, to grow and all that kind of stuff, then I’ll be doing the work that I’m meant to be doing while I was on the planet. know, nobody kind of

is on the planet to turn up and then capitulate to a difficult time and then just, you know, let things go down a different path. So it’s like the whole, and my initial way of getting through was going to counseling and psychology support because I needed to talk it through. My wife was amazing. My children were teenagers, the young teenagers.

a lot to kind of wrap my head around and talk about to sort of make sense, make meaning to contemplate my mortality and all that kind of stuff. But what was really cool is I’d been going to counseling for seven years before that. My counselor was like, she was my, she was like my community elder that I never had. You know, I had my mom and my dad, but this lady, her wisdom, her level of wisdom was kind of next level. So I would go and seek out her wisdom.

actually more than be counseled by her amongst other things. And I had been, I’d been seeing her for seven years before that. And I was speaking about it just a few days ago saying like something in me said, you probably need to be doing this for many, many years, you know, from your late twenties to however long it takes, but you need to be doing this. And when I did do it, I felt this real,

kind of sense of calm, even in the chaos, even in the madness. Nobody else around me was calm, but I was. And I was able to make really good, rational ⁓ decisions around my health, well-being, who was and who wasn’t gonna support me in hospital, ⁓ which doctors I was going to be ⁓ attended by. The whole entire process, I was in control of the whole thing. And my biggest job was to…

⁓ Even when I was cognitively impaired and couldn’t make sentences, speak, et cetera, to ⁓ create a ⁓ sense for other people that everything was okay or is going to be okay ⁓ or is okay. And therefore, if I can keep them all calm and collected, because we’re from a great emotional, crazy, very caring…

very stressed out ⁓ community, family, if I can keep them all calm and collected, together we’ll all move through. I felt like I had a responsibility to them as well to make sure that I could present in a way that was ⁓ with deficits in mind. It wasn’t about pretending they weren’t there, but it was just like, still, even with all the stuff I’m going through, we’re gonna be.

calm, collected, logical, we’re gonna move through this and we’ll be okay. ⁓ I feel like those things that you do that you don’t know you’re doing that are preparing you for later in life, like church seems like that for you, like it seems, it was the thing that kind of was that really good foundational stone where you could start leaning onto and then rebuilding from.

Daniel Coggins (37:05)
Yeah, I

mean, think I had… So I’ve been involved in church most of my life and it’s been super essential to my life. ⁓ my faith in Jesus has been kind of the primary thing to most all of my life. ⁓ so I’ve thought about a lot of different things kind of in my head and I formed thoughts about theological things and thoughts about suffering and hardship and these kinds of things.

⁓ so I had contemplated many of those things, but this was the biggest. In the first experience in my life, where I, a lot of that really got put into practice and in a lot of things that I feel that I knew or that I would have said, yes, I agree with that. They, they weren’t just theoretical anymore, but they were real life. were practical for me. And.

And yeah, I mean, you also mentioned I really resonate with something you said, but the thing about peace that really resonates with me because in this very bizarre way, ⁓ even from like early, early on when I was in the hospital, right? As I’m starting to gain cognition of my scenario and of my situation, what’s going on. I had this overwhelming peace and. ⁓

And I guess just this acceptance of the situation and acceptance that like my life will no longer be the same. And there’s gonna be a lot of different things about my life, a lot of different challenges that I’m going to face. But I’m super thankful because from very early on, God just provided me with this acceptance of my plight, of my challenge and gave me peace that like.

It’s not always going be hard. There’s going be, you know, challenging days, challenging moments, but I just had a piece that he’s going to be with me in all of it. And he’s not going to leave me in that he’s prepared me for it and that it’s not a, I’ve not done anything wrong, you know, that made me like deserve this situation or to deserve us.

Bill Gasiamis (39:22)
that.

I love that. I love that you got that.

Daniel Coggins (39:26)
Yeah, yeah, like I just, I just had this overwhelming peace. And I found it in scripture, right? You have the phrase peace that passes understanding. And that really, that really ⁓ applies to my situation. Cause I felt that from a very early time. And my wife did too. My wife really experienced that even earlier than I did because ⁓ she was going through it and she’s like, am I going to, am I going to lose my husband?

what’s going to happen here. And there was this one moment for her day two, day three, forget exactly when it was, but early. And she just had this overwhelming peace come over her and ⁓ she just felt God, you know, guiding her and speaking to her and directing her to trust, you know, certain medical professionals and ⁓ different people that were put in our path that were helping to guide and, know,

helping to treat me and make decisions and whatnot on things that I needed to improve. And yeah, my wife had that as well. And that doesn’t mean I don’t say all that to gloss over or say that we haven’t had challenging moments because we 1,000 % have. And we still do, and I still do. Fortunately, those are farther and farther apart. The more and more I get removed from

the stroke itself. ⁓ but that doesn’t mean those things have been erased or that those don’t exist because they do. But I have had this kind of undergirding, overwhelming peace and acceptance the entire way, even amidst those tough days, tough moments, tough circumstances, all that kind of stuff.

Bill Gasiamis (41:15)
Yeah, I’ve got, um, um, I’m 51. So I’m a few years, uh, older than you a couple of decades. And also I am, uh, going to be, it was 2012. So I’m in 2016, it’s going to be 14 years since the first incident. So I’m a few years ahead of you with regards to like my, the time since my first incident.

And then, ⁓ man, that’s been a journey, like so many things to overcome and so many challenges with deficits on the left side, all that stuff, all those things are like pretty normal things. And then life, life happens to everybody. That’s a forever thing that doesn’t pause. can’t just pause life and then deal with all of your stuff and then get back to life. ⁓ So that’s an interesting challenge. And then as you get older, know, other things start to play up. And for me, I,

I started getting really bad migraines recently. ⁓ for many, many years I’ve had just headaches almost every day, either constant or intermittent, or sometimes they’re in the morning, sometimes not there, ⁓ in the morning. And sometimes they’re at night, like all over the place, just headaches everywhere. And my blood pressure went, went really high, ⁓ from somebody who had normal blood pressure literally a year and a half ago to, you know, it being at like one 70 over 110.

And that meant that that created a new wave of doctors appointments, checkups, tests, scans, a whole lot. And I remember I did come home one day, my wife asked me about my recent appointment or scan or checkup or whatever it was. And I just said to her, I think I’ve done enough time. I’ve had enough medical issues. I don’t need anymore.

And I did actually even say like, is this happening to me? I’ve had enough. it just goes to show you like even in your ⁓ calmness and your ability to ⁓ move through and overcome and get better and have a podcast and share all those amazing stories from people and, you know, show hope and all that type of thing. You still have those days. You still have those days. It does get the better of you. And it’s then.

realizing that you’re in that moment and going, okay, I’m going to allow myself this moment, short amount of time, whatever it is, I’m going to have the pity party or whatever you want to call it. And then I’m going to refer back to all the things that I did previously to get me beyond this moment right now. I’m going to refer back to, is it counseling? Is it church? Is it ⁓ contemplation of my faith, my beliefs, putting in action?

my problem solving mind, my ⁓ curious mind, ⁓ whatever version it is so that you can deal with that, contemplate it, feel the feels and then ⁓ move on and shift it and change it and become proactive. it doesn’t really, I’ve found that stroke is kind of, I’ve said it like this, I’ve mentioned it a few times, like it’s the gift that keeps on giving because

The lessons still coming. And I’m not saying that in any way to promote it or to say that it’s amazing. Like it’s not something that I would wish on anybody and I would prefer people never had one. But since you’re here, what else is there to do? Like what else can you possibly do other than roll with the punches, so to speak, or get back up when you get knocked down, you know, there is just no other way to go about it. You have to put in place all the time discipline.

You’ve got to be disciplined about putting in place the solutions to overcome the thing that you’re feeling right now. ⁓

Daniel Coggins (45:16)
Yeah, that was so much of my mindset as well, because when I had the stroke, was 28 years old. And, you know, that’s why when you asked the like fork in the road question for me, I didn’t experience a big one because I think in a lot of ways, I just don’t even know that I had much of an option. You know, I think it was kind of. It was like roll over and. You know, not do anything with this and don’t try or.

do the thing because I have so much life ahead of me, know, God willing, and I’m 28 and I’m married and you know, my wife and I have one day we’d love to have children and all this kind of stuff. And ⁓ you know, like I think for me knowing that like I’m 28 years old, I kind of just have to press ahead and do what I can do my best, ⁓ seek out the therapies that I need to seek out and

put do the exercise that I need to do put the discipline implement the discipline in my life that I need in order to. Game back as much as I can to minimize the deficits you know. I’m going to have deficits but you know how can those be as. Least debilitating as possible how can I get back to work how can I drive again how can I. Game back some of those things that.

those things that make me independent that I don’t want to not in a hope to like have the mirage of like, I’m independent and I don’t need anyone because that was obliterated. That was blown up. But get back to where I have some of those things that make me independent that allow me to, you know, contribute as a friend and as a husband and hopefully one day a father and all these kinds of things. How can I do the things in my life that will help me get to that point?

Because if I don’t, I’m 28 years old, now I’m 30. So it was for me, was pretty obvious, it was pretty clear, I need to do this, I have to press forward. And I had so many folks in my circle and people in the community that have been cheerleaders and advocates and encouragers and pushed me forward. And when I wanted to, you know.

take my foot off the gas or give up or whatever they’ve kept me going and they’ve encouraged me and all that kind of thing. So there’s been so many people that have done that, but yeah, for me it was very much like, is, it’s kind of obvious to me, this is really the only thing I can do. The alternative is just so not what I wanna be. I don’t wanna shrivel up and shrink back and.

live in fear, live in the pity party or whatever, obviously moments of that, but living in that was just not really an option for me, I don’t think.

Bill Gasiamis (48:20)
Yeah, sounds like you burn the bridges, you know, get to the other side of the, could get to the island, burn the bridges and that’s it. This is the only option you have. got to deal with what you’ve got when you get there. And also, ⁓ it’s like suffering, but with purpose, like there’s a purpose behind all of this rather than capitulating and going, I’m not going to do this. That’s it. I give up. But then you’re suffering without purpose because suffering doesn’t kind of go away.

you’re going to suffer the road to recovery or you’re going to suffer the capitulated ⁓ path, which doesn’t give you anything positive. You don’t get anything out of it. It just becomes a constant never ending, like really terrible non-productive suffering.

Daniel Coggins (49:14)
For sure. And I’ve seen that to the point of purpose. I’ve seen that and I see it more and more honestly as time goes. Just in conversation with people and I’ve been able to share my story some with folks. You know, I see the purpose in my story. I see the purpose in what I’ve walked through and I’ve been able to share that story with others and that gives it a lot of purpose. And that doesn’t mean it’s like a

fun story or a fun experience in every way. But it is, it does give it purpose to say, you know, Hey, this happened to me, but, I didn’t just like roll over and take it and let my life just like disintegrate, but rather I’ve allowed it to like push me forward. ⁓ and then yeah, there’s purpose in it. God’s been with me the whole way. And I

I’ve come to know God more personally and in a deeper way than I did before. So I’m able to share that with others and I’m able to share my experiences and what I’ve learned. And it’s given me access to relate to people that I couldn’t relate to beforehand and share with and talk to people that maybe I wouldn’t have connected to beforehand. ⁓ It’s given me…

a voice to have something to share in certain circumstances that maybe beforehand I wouldn’t have much to add or to give. So yeah, I’ve seen a ton of purpose for myself in the journey and then kind of this road that I’ve walked since then.

Bill Gasiamis (50:57)
Yeah. And here you are on the podcast with somebody on the other side of the planet who you never met before. We’re sharing a story and the purpose of that is hopefully it reaches somebody and makes a difference in their recovery and helps them overcome what it is that go through. They’re going through ⁓ contemplate perhaps ⁓ things in a different way from a different perspective and maybe help them on their journey to overcoming whatever challenges they’re facing.

Daniel Coggins (51:27)
Absolutely. Absolutely.

Bill Gasiamis (51:31)
What would you say if you had to rate them? What would be the hardest challenge that you had to overcome? Do you think it was physical or emotional? I think…

Daniel Coggins (51:38)
I

I would say, think the physical piece has been quite challenging and I think I still have that challenge in a lot of ways. I think some of that I’m going to live with probably the most of the rest of my life. I still struggle with a lot of fine motor stuff on my left side. So typing on a keyboard is very tough, very slow. do a lot of one-handed stuff as much as often as I can.

know, physically, like, I, said, I jog beforehand, right? So I’m actually tomorrow with a few friends. We’re running in a 5 K in the city that I live in. So that’ll be kind of that’s been a goal of that on the calendar now for for a while. So that’s going to be exciting to get out there. Run run a 5 K beforehand to 5 K would have been, you know, no big deal now a 5 K.

is about equivalent to like running a half marathon for, in terms of fatigue and effort that it requires and all that kind of stuff. Yeah, physically, I think I still have a lot of challenges and I think I will. I’ve come a long, long way from not being able to, not being able to stand and you know, left-hand my, my left-handed speed and accuracy and coordination has

come a long way, even though it’s still not anywhere near what it was. so physically, I think I’ve come a long way, but I haven’t like fully overcome and I don’t know that I will, but then emotionally to that one, I would say so early on, the interesting thing about the cerebellum is it, it’s smooths. The thing that I learned through this, which I did not know beforehand is I guess the cerebellum helps with like

smooth movements, right? So any sort of smooth movements with my hand or with my body, but then also metaphorically with like my emotions. So transitioning from one emotion to the next, if you know, normally people would be able to transition from the feeling of sadness to not feeling sadness, that might happen relatively seamlessly and smoothly, but for me, it’s much more abrupt now. ⁓

And so like early on I would have emotional moments where like I would just go from one feeling or one emotion to the next pretty quickly. And it was harder to control and it was harder to manage. So, but I do feel like in a lot of ways I have been able to overcome a lot of that, which in not a lot of that’s not even bad. I think it’s, it’s just, it was interesting to kind of navigate and figure out how to, how to manage my emotions. ⁓

But one of the gifts that I’ve found through all of it is actually while I’ve come a long way in how to manage my emotions so that I can just engage in more situations and be present in more spaces. While I have learned how to do that, I do have, think, ⁓ a more heightened emotional sensitivity now than I once did. And in a lot of ways, it’s actually been a gift to me.

Um, so for example, um, like I’ve said, I’m very involved in the church that I go to and, and this doesn’t happen all the time, but a lot of times when I go to church now and we’re singing, we have music, we’re worshiping. And a lot of times there will be something that we sing or something like a lyric in the song that will just really touch me and affect me emotionally. Um, and I’ll tear up or get emotional.

And early on that would happen like all the time, know, that like two years ago, that’d be every song every Sunday. And I just be like, okay, this is kind of annoying. I’m kind of, this is not enjoyable because I can’t control it at all. Whereas now it’s not as often. So it’s actually, so it’s not annoying in that way, but it’s actually a gift when it does happen because I can feel

I guess my emotions being affected by what I’m doing. And ⁓ it’s, it’s, I have a broader, I think, range of emotion, emotional experience than I once did, which is actually in some ways now that it’s kind of regulated a little bit. That’s actually a gift for me that I’ve been able to experience.

Bill Gasiamis (56:30)
I love that. So there is a medical term for that heightened emotional response, the pseudo bulb affect.

Daniel Coggins (56:38)
Okay.

Bill Gasiamis (56:40)
Some people have the laughing version of it where they laugh uncontrollably in places that perhaps they shouldn’t be laughing. some people who I’ve interviewed found themselves at a funeral and needing to be crazy laughing. ⁓ so it’s not appropriate, ⁓ but again, it settles down for people and most people are able to control it, or, manage it later on. So years down the track, had the same thing. I still have that.

sensitivity to ⁓ certain experiences that make me emotional. ⁓ Music is one of them. there’s a French song by ⁓ an artist called ⁓ Barbara Pravi or Pravi. And she sings a song called Voila Voila. And the song is about a performer describing what it’s like to be a performer kind of thing.

and sort of doing a meta description of what ⁓ performers go through, something like that. So it’s a performer singing about what it’s like to be a particular type of performer. The thing about it is ⁓ it’s an amazing song when Barbara Pravy sings it. But then there’s a young girl, Emily Cock, who won one of the like America’s Got Talent type of

shows, but in, think, Denmark or somewhere in some other country. When she was like 13, I think it was the children’s version of the show when she was 13. So as a result of that, she wins the opportunity ⁓ to ⁓ perform on stage with Andre Rieu in some amazing outdoor theater somewhere in Europe, I don’t know where. And Emily comes on

And she sings that song better than the original artist that first sang that song a couple of years earlier. And I’m just watching it on YouTube and just in tears because it just gets beyond your barriers. It gets beyond ⁓ the things you put up to protect yourself in the past that nothing’s going to penetrate. And it just gets in there. And the whole story about it is

It’s a fundraiser, that particular event. Emily Cox got a particular condition, which means that she has trouble with digestion or something like that with her stomach. It doesn’t have the ability to digest. So I connect all those dots, who she is, what she’s suffering through, how she’s tackling it, the song that she’s singing, the fact that she’s 13, the fact that she won through all those

you know, difficult things that she’s had to put up with her short life. She’s, you know, um, won this particular event and she’s passionate about singing. And now I get to sit on my couch and watch this song on YouTube. It’s, moving. cannot not be moving. It is just impossible for it not to be moving. So, um, and I get that sense as well. Like I experienced things far more deeply and I never thought of it as a gift, but it’s a really

right way to describe it. really is. It seems to me now that I get to contemplate what you said, that it is a very, ⁓ the spectrum of feeling has, you know, has widened.

Daniel Coggins (1:00:23)
Absolutely.

Bill Gasiamis (1:00:24)
and I

get more of it. I got initially more of the bad as well, which was interesting to contemplate, overcome, find new skills to deal with and learn how to apologize for, for being ridiculous when I shouldn’t have been. know, even that’s a gift, but on the other end, it’s more enjoyable, I think, to be able to get emotional. And at one point, the camera is on the crowd and she’s got this young girl has got like,

I it’s a small shot of a few people, but if you just zoomed out on that shot, which you don’t get to do because you can’t see all the individual faces, I reckon she had half the crowd in tears. It was so moving. was unbelievable. I’m going to put a link in the YouTube description for people who want to watch that video because it is phenomenal. Yeah, sounds awesome. So thank you for sharing your…

You know your perspective on that, that, ⁓ that it can be a gift because a lot of people take it the wrong way. ⁓

Daniel Coggins (1:01:33)
That was the way someone framed it for me very early on, because I was sharing with them kind of the frustration around it. And one of my good friends kind of framed it in that way. And that was, I don’t know, that was two, probably two years ago now. And since then that’s really helped me just kind of have it be able to view it through a different lens and actually see it as a gift and as a positive thing, not as this like nuisance or irritation.

Bill Gasiamis (1:02:01)
Yeah. So recently ⁓ I had an appointment with my neurosurgeon to do a follow up based on my headaches and all the high blood pressure and all that stuff. And as a result of that conversation, she asked me to do a small presentation at the ⁓ Royal Melbourne Hospital Neurosciences Gala Ball. And they wanted me to present before the main auction so that I could share my story and sort of try and get the crowd, move the crowd.

into a place where they’re going to raise their pedal and buy lots of stuff and spend lots of money at the auction. There’s 400 people at the event. It’s black tie. Like it’s full on. And I agree to it. I love speaking in public. It’s no issue. You’re asking me, you nervous? And I’m like, no, I’m not nervous. I don’t get nervous. I enjoy the opportunity. And as soon as they call my name and I have to walk, you know, the 100 yards from my table to the stage.

and the crowd is clapping, I start getting emotional. I’m not even on the stage yet. And I have to calm myself and gather myself because I’ve got to get through a nine minute presentation. So I get up, I get introduced. I start speaking and I’m going okay for the first one or two minutes. And then I start to mention, I think my children or something like that. And then once again, I start getting emotional.

And I have to compose myself through this presentation about four or five times to get to the end of it after eight minutes or so. And I didn’t see it as a gift then. I see it as a gift now because the result of that presentation, not that I was the only reason why this happened, was that they raised over $100,000. So why not? Why not?

go out there, put it out. Maybe that emotion helped, you know, move the needle above a thousand dollars. don’t know. And that goes directly to supporting researchers to find new ways to support stroke survivors, other people’s psychological conditions. Do you know? Yeah.

Daniel Coggins (1:04:17)
I’ve had a similar experience. I’ve had a couple smaller opportunities in the past five, six months to share my story. And ⁓ the interesting thing too about my story is I’ve shared obviously kind of the stroke piece of it, but in that I had a 12 month period where there was other really challenging things that happened in my life as well. the stroke was the biggest piece for me, the most like the longest and the most…

life altering. But over the course of that 12 months, there was other really bad things that happened as well. One of which was that my dad passed away actually. I’ve had the chance to kind of share the story of that full year now a couple of times. And both times that I’ve done that with a group of people, I struggled to get through it.

I’ve struggled to get through it without, you I’ve had ⁓ emotions and I’ve been, you know, just kind of slogging my way through it. ⁓ to your point though, like, I’ve had to kind of like take moments to collect myself or whatever, but I think I’ve just been convinced that, you know what, like in those situations when I am sharing,

my story and I’m specifically able to share kind of like from my perspective what God’s done in my life over the course of that year and over the course of the challenges that I faced. ⁓ While I’m able to communicate that and share that, I actually think it is a gift to the hearers when I’m able to express emotionally to that degree what has happened to me. ⁓

Obviously, I don’t want to be so emotional that I can’t get words out and I can’t think coherently. Right. But so long as I’m able to still communicate and think clearly and communicate what I want to communicate, I actually think the, emotions that I’ve been able to to give in those situations actually heightened. The, uh, the response and the effectiveness of what I’ve been able to share and.

It made it real, right? Because if I say everything just with a really flat face, ⁓ I don’t think it probably lands as well as if I’m there expressing emotions as I’m sharing it to the here. So yeah, I mean, think that’s part of the gift of communication is the way in which it’s communicated really does impact the person that’s receiving it.

Bill Gasiamis (1:07:06)
I think it gives the here the permission to also be emotional. Yeah. Especially men who avoid it if they can’t. 28 year old guy telling me a story is crying in front of me. Hmm. Okay. Maybe I can do that. Yeah. Maybe if I do do that, it won’t be the end of the world. Maybe they get to observe how other people react and realize that it’s people are not ridiculing you or they are.

Daniel Coggins (1:07:13)
for sure.

Bill Gasiamis (1:07:36)
being moved by your, know, they are touched by your expression or whatever it is. And I think that’s probably what I kind of get out of it is that every time I cry in front of a crowd, 444 people, it doesn’t matter. It’s still, I don’t walk away. I don’t go to another room. I don’t try and, you know, wipe my tears and make everyone feel better. I just go through it and then.

Yeah, get through it and then I just smile and we move on to the next part of the conversation. It doesn’t really matter.

Daniel Coggins (1:08:10)
Absolutely. And I’ve told folks too in those scenarios, I’ve told them like, hey, I even want one of the ⁓ talks I was giving, I was getting emotional, I was trying to collect myself a little bit. And I kind of told the group, was like, hey, like, essentially like, I’ve done this in lots of other scenarios. This isn’t the first time I’ve done this, right? It might be the biggest group of people that I’ve done it with standing in front of them and being

right there up in front of everybody. But I’ve sat in a coffee shop with the person I’ve met for the first or second time and I’ve sat there and I’ve cried with them and I’ve sat and cried with a lot of different people over the course of the months and weeks. so it’s not the first time when it happened in those scenarios, it was just maybe the biggest group, or bigger group in those scenarios.

Bill Gasiamis (1:09:10)
Yeah, I hear you. I’m just going to go back for a second. You mentioned that you’re typing a little earlier and something sprung to mind. Sure. My typing ⁓ left side is a little bit labored as well. It’s not ideal, but I can still type. and recently I came across a AI product called whisper flow. I’m going to have a link in my bio as well. And my little link will give you a one month free trial. this is not a

I’m not sponsored by them or anything. just use this product. I discovered it about six weeks ago. And what you do on my Mac book computer, you program the function button as the button. As soon as you press it, it starts recording and in any field on any website in anywhere that you ever in any program. If your cursor is in that particular field and you press the function button.

And then you speak just like we’re speaking now. It types. It types for you. ⁓ I think my typing speed is like at about 120 words a minute. I mean, I would never be anywhere near 120 words per minute. And it’s accurate. It corrects mistakes as you make them. It kind of gives the right context. Every once in a while you have to go back in and ⁓ change a letter or fix a word. ⁓

takes away that the time it decreases the amount of time it takes to type words into into your computer basically just press the function button and it does it and it’s 150 I think it was 150 US dollars the year for the whole year something like that yeah yeah

Daniel Coggins (1:10:58)
That’s not bad at all.

do a lot of that’s super cool because I do a lot of voice dictation in my job and even his personal time as well. But I can’t do it everywhere. So I do it in like, I do it in the Outlook, Microsoft Outlook or certain applications that have the ability to do voice dictation. But if I’m just searching the web or whatever and I need to put something in a box.

I can’t do it, so that’s actually a fantastic ⁓ tool that sounds like that can really help use it more broadly and that it has a lot of the, it’ll fix mistakes and all that kind of stuff. That sounds great.

Bill Gasiamis (1:11:40)
Yeah, and if you’re on the web and you’re going to Google search bar and you just type in recoveryafterstroke.com, it’ll put it in the correct format so that you can just search it.

Daniel Coggins (1:11:52)
Wow, that’s awesome.

Bill Gasiamis (1:11:54)
Brilliant. I’ll have the link for that and I’ll send it to you as soon as the interview finishes, just so you can check it out. can check it out for a month for free. And what’s cool about the free month, it is like the full suite. So you get to experience exactly how it is and you don’t even have to put your credit card down for that entire month. And then if you get to the end of the month and you don’t want to pay, it’ll just go from being the full suite, which gives you unlimited words. It goes down to about 2000 words a month or something like that. And it’s free.

You don’t have to pay anything. even for people who ⁓ don’t type as much as I would or you would, ⁓ just the free version will change your life because it’s amazing. It’s a great, amazing tool and hack for people who have ⁓ deficits in one hand or the other. look out for that link, guys. ⁓ So what’s life look like for you now?

Are you moving through life? What are you doing? How are you involved in your day to day? What’s it like now?

Daniel Coggins (1:13:00)
Yeah, so I went back to work. My company actually held the role for nine to 10 months, which was fantastic. But I work in a role. ⁓ It’s called strategic sourcing. So I have a sourcing role. So I work with a lot of sales folks negotiating contracts, negotiating deals and that kind of stuff. So that’s what I’ve been doing. And I’ve been able to get back into my job. ⁓

day to day, I’ve been able to step back into ⁓ things that I’m involved in, recreationally to some extent, and then spiritually in the church. ⁓ I’m actually one of the leaders at my church, so I’ve been able to step back into that role, which is exciting for me. ⁓ So I think there’s a lot of changes overall. My personality has changed a little bit. My abilities have changed, but I am able to do

a lot of things that I once did. I still have some therapies that I go to where I’m still sharpening different skills. We have a few fantastic therapists in the area that I’ve been able to just build relationships with. So I still go there because I’m still seeing progress even if it is slow with them. And…

Yeah, so and then from a wife and I, we, actually found out recently that we actually are expecting. So we have a baby coming and that was very exciting for us. Um, because. You know, before we didn’t have a baby before and then I have the stroke, I’m kind like, okay. Well, we want to have a child so, but we’re just have to figure this out. So that’s on the horizon for us now. So we’re super excited about that. That’ll be in.

Bill Gasiamis (1:14:53)
Excellent.

Daniel Coggins (1:14:55)
Yeah, I mean, I think just grateful day to day, you know, for what, what God’s given me the ability to do. And, um, I’ve been able to get back to a lot of things that I once did. Some of it looks different, you know, you know, I have different aspirations and desires and things. I want to help people that, you know, have had. Freak medical things happen to them or strokes, young, young stroke survivors, you know, people that have had.

Brain injuries, what have you, so that’s kind of a new thing in my life that was not there beforehand. So I’m super excited over the next several years of how that could, what I could do with that and where I can help people and what opportunities might arise in just in my community or wherever, where I can help people.

Bill Gasiamis (1:15:45)
Sounds

great, man. Good work. ⁓ if someone’s listening, that’s just how to strike. What would you say to them?

Daniel Coggins (1:15:52)
I would

say, I would say, you know, just keep at it. Don’t like, you know, I don’t know where everyone listening is, you know, listening from, but I know at least in the United States, there’s a lot of, um, listen, like the medical system, there’s a lot of barriers put on like how far you can get. And there’s a lot of, you’ll never get past this or you’ll never get past that. And

And I would just say, you know, think outside the box, find, you know, people that aren’t going to limit you and that aren’t going to tell you that you’ve reached your ceiling and put those people in your corner. ⁓ yeah, don’t be limited by what people around you or what the system around you might tell you is the maximum that you can reach. and then really do just like, I guess, to what we talking about earlier, don’t.

Don’t view it as all negative. Find how something bad, something hard, something painful and something that brings a lot of loss in your life, consider how that could actually be used for good in your life and in the life of others and how actually it’s maybe not fully a bad thing and how…

how it could be used to the betterment of those around you if you allow it to.

Bill Gasiamis (1:17:25)
Yeah. Yeah. Find a, ⁓ like, ⁓ like allocate something like, you know, what’s good about this right now? What could be good about this? If there was something good about this, what might it be? Right. Some kind of question like that. Squeeze out the silver lining from the dark moment. know?

Daniel Coggins (1:17:53)
And just being open to it, you know, like, don’t think every moment you’re always going to have that positive thing. I’m not advocating even for, you know, flimsy, always happy, you know, non-realistic. I’m not advocating for that, but really, but also I guess questioning some of the questions that you might have like, Hey, why did this happen? And actually going past that and asking, well,

you know, how actually could this be used in a positive way and pushing past some of those things and not just like stopping there and letting that just like derail your entire life.

Bill Gasiamis (1:18:38)
Yeah. What do you believe now about healing and growth that you didn’t believe before?

Daniel Coggins (1:18:43)
I think,

well, I mean, in terms of healing for me, like I really do truly believe that like the Lord had me in his hand and that he preserved me and kept me. like, like I believe God played a part in that and that he helped me heal some and improve to a point and stay alive. Right. So that’s, that’s where I’m at on that piece. Within growth. mean, I think.

What I believe about growth is like, kind like what I was just saying. I don’t think, ⁓

I don’t think we should put limits and ceilings to things. I think sometimes we, limit ourselves if we say like, I can only do this or I can only go this far, or I can only achieve X. It’s like, well, the minute you put that ceiling on it or that app, then you probably won’t go past that because you’ve kind of already made it up in your mind that you’re not going to be able to do more. ⁓ so I think growth is.

in a lot of ways is kind of what we make it and it’s how far do we want to go? How much do we want to press in that process?

Bill Gasiamis (1:19:55)
I love it. And what has stroke recovery taught you that most people might not understand?

Daniel Coggins (1:20:03)
I

there’s a dichotomy in stroke recovery where, and the dichotomy is this, I think, and I’ve experienced it, where I felt so supported and people have been so quick to listen to me and to hear my experience, to hear my perspective, to be patient with me, to take into account my needs.

So people have been amazing, they’ve been fantastic.

But which is like, I guess the really positive side, but then the other side is it’s a very individual experience. And there’s a very unique, I think, loneliness that kind of comes in the midst of it where ⁓ people love you and people love me, people help me, people look to my needs. They listen to me. They want to understand me. All of those things.

⁓ But then it gets to a certain point where ⁓ they can’t know all the things, they can’t know all the experiences. They can be as empathetic as they’d like, they can put themselves in your shoes as much as they’d want to, but there is a point where they aren’t gonna be able to get there. ⁓ that’s hard, and that’s hard. That’s one of the hardest things I’d say that I’ve experienced is,

those moments where they just cannot, no matter how close they are to me, whether it’s a really good friend of mine or a family member or my wife, I can explain it, but they still might not fully be able to get it. ⁓ So it’s this weird dichotomy of experiencing that pointed loneliness, but then also feeling so supported and cared for and loved. Yeah.

Bill Gasiamis (1:22:07)
That’s such a amazing way that you describe that unique loneliness because that’s exactly what it is. People will never get it. And I suppose if you’re a caregiver listening to this and you want to be supportive and you want to be all the things that your heart is telling you to be brilliant. Also accept that you will never really understand that person in their unique loneliness.

But also if you’re a stroke survivor and you’re experiencing the unique loneliness, also understand and come to acceptance that the other people can never know your unique version of loneliness because in order for them to do that, the only way they can come anywhere near that is to have a stroke themselves. And we don’t want that. We don’t want anyone to know what it’s like to be us at all. We would rather they didn’t.

And that and therefore if you can accept that they never will not through lack of wanting trying or effort just because that’s how it is Well, then you’re going to be okay sitting in your unique loneliness And then what you can do is find a way to channel that to make it ⁓ Transform into something else, you know, initially it’s hard to sit there. I’ve been there and I was frustrated with my wife

and my children and everybody who didn’t understand me. But the reality is, ⁓ it was better when I became aware that my unique loneliness then enables me to do something that nobody else can do with their experience. And for me, it was my version of my stroke podcast, my version of my book, et cetera. I channeled that unique loneliness into other things that I never ever would have contemplated before. ⁓

And I think that unique loneliness gives you another gift of a perspective that you can’t get any other way. You just cannot get it. But it’s what you do with it.

Daniel Coggins (1:24:20)
Yeah. Yeah. And I would just one final thing I would add on that too, is for me, I would say in my moments and I guess my state now in this, having had a stroke in my state of unique loneliness, what we’re in those places and in those times where no human can connect with me or understand me fully. Those have been the moments.

where God has really ministered to me and met me most deeply and in the most real way and being able to share in that with God and from my faith background to share that with Jesus and to know that ⁓ He endured suffering and hardship and I too have done that and I actually share with Him in that now and there’s actually a very comforting

thing that comes out of that, which is kind of mysterious and hard to even explain. But in those unique, lonely moments are when God has met me, I would say.

Bill Gasiamis (1:25:29)
Yeah, wow, that’s profound. ⁓ What makes you feel proud of how far you’ve come?

Daniel Coggins (1:25:35)
⁓ you know, I mean, these are just kind of a couple of goals I’ve had over, ⁓ over time, but, you know, I’m proud that I’ve been able to get back to some of the things that I enjoyed doing. said earlier, like hiking, and last, last month, two months ago, my wife and I, went on a vacation and went to one of the national parks here in the U S and we were able to do a hike.

that was 2000 feet of elevation gain and then like seven, six to seven miles. And it was tough, but it was by far like the hardest hike I had done. And my wife and I, finished it and later that day we looked at each other and I was like, I think that would have been the trail that we would have chosen before the stroke. Because over the past two years, a lot of the times when we’re choosing trails that we wanna do, we’re having to like, well like,

that one would have been nice, but I can’t do it. So we have to choose one that’s easier or shorter or whatever. But the cool experience two months ago was we did a trail and it took us most of the day and it was challenging, but it had amazing views and it was all the things that we would have probably chosen to do had I had a stroke or not. So that was just a really cool moment to be able to do that. ⁓

And then also, so, like I said, I’ve done a couple of triathlons and three months ago, my wife and I, and one of our friends, we did a sprint triathlon relay and I was able to do the swim portion of that. And ⁓ that was really cool just to be able to, it was, was challenging. ⁓ The swim was not easy for me, but it was really cool to kind of get back in, that space and.

do something and we didn’t do it competitively of course, but we did it. And it was the same kind of buzz that we felt ⁓ when doing triathlons previously. So it was kind of just cool to have that experience ⁓ again, since we had not been able to do that in several years.

Bill Gasiamis (1:27:55)
Yeah, that sounds amazing. Daniel, thank you so much for reaching out and joining me on the podcast and sharing your story. really appreciate it.

Daniel Coggins (1:28:02)
Absolutely, Bill. I really appreciate all your time. Thanks so much for your time, your listening, and ⁓ just let me have an opportunity to share with everybody.

Bill Gasiamis (1:28:11)
Thanks again for joining me for this conversation with Daniel. If his story resonated with you, the sudden collapse, the dizziness no one recognized, the long hospital stay or the emotional ups and downs that come after a cerebellar stroke, you’re not alone. There are thousands of survivors walking this path right alongside you. Remember to subscribe on YouTube or your favorite podcast app because these stories really do help people feel less isolated.

Remember to leave a comment or a review. It helps more survivors find the show and remember to take a moment today just for you. You’ve earned it. And if you’d like a deeper dive into healing mindset and post-traumatic growth after stroke, my book, The Unexpected Way That a Stroke Became, The Best Thing That Happened is available now. Thanks for listening and I’ll see you in the next episode.

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