Perispinal Etanercept Experience: A Paramedic’s Stroke Recovery Story

Recovery After Stroke

Perispinal Etanercept: A Breakthrough in Stroke Recovery?

Stroke recovery is often a long and arduous journey, particularly for individuals suffering from chronic post-stroke symptoms. In recent years, etanercept, an anti-inflammatory biologic typically used for rheumatoid arthritis, has gained attention for its potential in treating neurological deficits related to stroke when administered via the perispinal route. This novel treatment approach is led by Dr. Edward Tobinick and has shown remarkable outcomes in post-stroke recovery, even in patients whose stroke occurred years earlier.

What is Perispinal Etanercept?

Etanercept is a TNF-alpha inhibitor, which blocks a protein called tumor necrosis factor (TNF). TNF is known to contribute to inflammation and has been linked to many chronic conditions. In stroke survivors, the brain’s prolonged inflammatory response can prevent full neurological recovery, leading to lingering symptoms such as chronic pain, mobility issues, cognitive dysfunction, and aphasia.

Perispinal administration of etanercept is unique because it bypasses the blood-brain barrier. Typically, large molecules like etanercept can’t easily cross this barrier, but perispinal delivery—combined with head-down positioning for a short period after the injection—enhances the drug’s access to the cerebrospinal fluid, allowing it to reach areas of the brain affected by the stroke.

How Does Perispinal Etanercept Work?

The procedure begins with a small dose of etanercept (25 mg) injected near the spine. Afterward, the patient lies in the Trendelenburg position (head below feet) for a few minutes. This positioning allows the drug to move through the cerebrospinal fluid and reach the brain more effectively. Once there, etanercept works to neutralize TNF-alpha, reducing inflammation and calming overactive neural pathways that may be responsible for ongoing stroke symptoms.

Clinical Outcomes and Benefits

Studies and anecdotal reports from patients who have undergone this procedure show that improvements can happen rapidly, sometimes within minutes. Patients have reported significant gains in motor function, cognitive clarity, and pain reduction. In some cases, survivors who struggled with basic tasks regained abilities such as walking unaided or speaking more fluently.

These clinical outcomes have been particularly notable in the treatment of central post-stroke pain (CPSP), a notoriously difficult condition to manage. The most recent randomized controlled trials have validated that perispinal etanercept can offer relief to patients suffering from CPSP and other chronic deficits​(Drugs.com)​(Stroke America).

Controversy and Challenges

Despite the promising results, the use of etanercept for stroke recovery is still mired in controversy. The American Academy of Neurology (AAN) has expressed concerns about the lack of large-scale, placebo-controlled trials and the potential for adverse outcomes. Nonetheless, small-scale studies and patient testimonies continue to build a case for its effectiveness ​(Drugs.com).

Furthermore, the high cost of the procedure—ranging from $4,800 to $6,000—places it out of reach for many stroke survivors. Currently, perispinal etanercept treatment is not widely available in the U.S., but it has gained popularity in other parts of the world, particularly in Australia, where recent trials have been conducted ​(Drugs.com)​(SpringerLink).

The Future of Perispinal Etanercept in Stroke Recovery

The potential for perispinal etanercept to revolutionize stroke recovery is undeniable. Its ability to restore lost neurological functions and reduce chronic pain has given new hope to stroke survivors and their families. With ongoing research and increasing demand for effective post-stroke treatments, it is possible that we will see broader acceptance of this approach in the coming years.

For stroke survivors seeking alternative treatments, perispinal etanercept may offer a new avenue of hope. However, as with any medical treatment, it’s essential to consult with healthcare providers to understand the potential benefits and risks fully.

Conclusion

Perispinal etanercept is emerging as a groundbreaking intervention for stroke survivors suffering from chronic post-stroke symptoms. Though it has yet to become a mainstream treatment, the science behind it and the promising patient outcomes indicate that it could play a significant role in the future of stroke recovery. As research progresses, more individuals may benefit from this innovative therapy and regain crucial aspects of their lives long after their initial stroke.

Perispinal Etanercept Experience With Dwayne Semple

Discover how paramedic Dwayne overcame some stroke challenges with Perispinal Etanercept. His inspiring journey offers insights for stroke survivors.

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Highlights:

00:00 Introduction
01:45 Basal Ganglia Stroke
04:34 Getting A Perispinal Etanercept Treatment
07:33 Life Before The Stroke
12:03 Dealing With Post-Stroke Deficits
17:44 Getting Back Into Cycling Again After A Stroke
23:59 Perispinal Etanercept Treatment Expectations
37:12 Perispinal Etanercept Treatment Initial Results
44:41 The Cost Of The Treatment
56:27 Perispinal Etanercept Treatment Honest Feedback
1:02:26 Possible Cause Of The Stroke
1:13:43 The Hardest Thing About The Stroke
1:15:52 Lessons From The Stroke
1:19:45 Being A Coach Recovery Coach
1:25:28 The Pseudobulbar Affect

Transcript:

Introduction – Perispinal Etanercept

Bill Gasiamis 0:00
Welcome to episode 320, of the Recovery After Stroke podcast. In this episode, I’m thrilled to introduce Dwayne Semple, who shares his incredible story of recovery after a basal ganglia stroke as a paramedic, Dwayne’s life was turned upside down when he experienced a stroke that left him unable to walk or move his left side. Through his determination, he’s found innovative ways to regain his independence, from local rehab to unconventional treatments like etanercept injections administered by Dr Tobinick.

Bill Gasiamis 0:36
Join us as Dwayne reflects on the challenges of stroke recovery, navigating life on a recumbent trike, and the hope he found through these therapies. This is a must-listen for anyone in recovery, offering insight, inspiration, and practical advice from Dwayne’s journey.

Bill Gasiamis 0:55
Before we dive into Dwayne’s story, I’d like to take a moment to talk about how you can support the podcast if you find these episodes helpful, inspiring or insightful, consider supporting the show through Patreon at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:12
Your support helps keep the podcast going, allowing me to continue sharing these powerful stories that provide hope and practical advice for stroke survivors and their families, whether it’s covering production costs or helping spread the word to a wider audience, your contribution makes a difference, and I truly appreciate your support. Thank you for your consideration.

Bill Gasiamis 1:34
Dwayne Semple, Welcome to the podcast.

Dwayne Semple 1:37
Hi. Thanks for having me.

Bill Gasiamis 1:40
Pleasure. Thanks for being here. Tell me a little bit about what happened to you?

Basal Ganglia Stroke

Dwayne Semple 1:45
Two years ago, in August, August 28 I had a basal ganglia stroke, right-sided and it put me out of commission for a few weeks, To say the least. Went to the local hospital, spent seven weeks there, started a rehab program there. We have a central rehab hospital in Halifax, Nova Scotia, which is about an hour from me. I was unable to get in to the seventh floor, which is the stroke and head injury unit at the time because of covid. So staff and patients were developing covid fairly quickly. They’d shut down the unit and we couldn’t get in.

Dwayne Semple 2:33
So I started my therapy through the local OT and physio works at the at the local at the local hospital, so my left side was affected, unable to move my arm, basically at the time, unable to sit up. So I had to be very careful. You know that I wasn’t tipping over on. You still there? Sorry, okay, no, my screen went all blown here, and I apologize. Yeah, so left side affected, unable to walk, unable to to move my left side vision was a little bit blurry, nothing too bad, but I still maintained my ability to speak, much to some people chagrin.

Dwayne Semple 3:28
Because I’m a talker by nature, and so, you know, I have two older brothers, and they said, you know, we tried for 55 years to get you to shut up, but we are so glad you can speak so that, I guess that was a bit of a testament. Anyway, following the seven weeks in the local stroke unit, I got moved to rehab. I spent another eight weeks in the rehab hospital, learning to walk, learning to, you know, do what I could with my arm, and then I was released just prior to Christmas 2022.

Dwayne Semple 4:03
Since then, it’s been home therapy and a bit of work with occupational therapy, physio is kind of let me go now, because my walkings, you know, not great. I’m still walking a bit stiff legged, but, but still, you know, moving on. Things have been, things have been pretty good, recently, I guess if that’s where I should go now, on the 25th of June sorry no it was before that, It was, that was my last injection.

Getting A Perispinal Etanercept Treatment

Dwayne Semple 4:34
But I went to Boca, Raton, Florida, as you know, to see Dr. Tobinick about the perispinal etanercept injections, which I had heard from, you know, every source after you have a stroke. Whether it’s I have new tongue of bat or whatever, you know, urban remedy, people will start sending you saying, This is great for stroke.

Dwayne Semple 5:00
Yes, and this video did capture me a bit, and I know that it’s been, been widely viewed in other parts of the country, as well as, you know, across the world, because he has patients going there, from everywhere. I was a little bit, you know, concerned that it was snake oil sales when I started the research, and I spent, you know, a great amount of time thinking about it and researching it. And I’m a paramedic by trade, so I’m in medicine.

Dwayne Semple 5:33
And when we’re doing research, we always go to the in North America, at least, go to our our best sources, which are the New England Journal of Medicine, the Journal of American Medical Associates, and on and on. And that treatment is not something that, you know, highly recognized in any of these, in any of these journals. So I read the documents that I could find, which were, you know, the the manufacturers of etanercept, and, of course, Dr Tobernick studies that he had done himself, but that was about all.

Dwayne Semple 6:10
So that left me even less impressed. So I looked at both sides, the people that I could follow, who had success or felt they had success, and the folks that were dead against it, who said, you know that it is snake oil sales. And this guy just, you know, just doing whatever. And it was really one of the selling features was, I was watching one of your podcasts, and there was a gentleman, I forget if he was from Tasmania or somewhere, who had flown to the US.

Bill Gasiamis 6:40
New Zealand, Andrew Stopps.

Dwayne Semple 6:43
Yes and I was, you know, his account was honest, and so on, and I had researched it to that point where I was at the point of making the checkbox and saying yes. So I reached out, got, you know, an appointment for two injections and and from there I went. So it was, it was kind of your show that helped put me, put me over the edge a bit to go do it.

Bill Gasiamis 7:13
Before we talk about that other side of it. So I want to get a sense of the kind of work that you did beforehand. And you know your life and all the things that you were doing before stroke that were interrupted, and then, then we’ll talk about where you’re at now.

Life Before The Stroke And Perispinal Etanercept Treatment

Dwayne Semple 7:33
Sure so I’m a lifelong cyclist, so I would put on a number of kilometers every week. I enjoyed riding for charity and so on and so forth. So I spent some time, you know, mountain biking and and road cycling. As I said, I’m a paramedic by trade. I’m a paramedic manager, so I’d been working, you know, a fair amount through the summer. We’re short handed. We have offload delays and hospitals and all that sort of thing. And so, you know, there was some extra work going on, but, you know, fairly fit, felt great most of the most of the time.

Dwayne Semple 8:14
And, you know, have a property that I love. It’s like living at your cottage where I live, and I’ve been, you know, we’re enjoying life. And following, following the stroke. Of course, I’m ‘Oh, yeah’ the other thing I guess I should say, is that that to get away from work along with the cycling, I have a little mechanic shop in the back, so I do bike repair as well. So that’s my that’s my stress relief and my get away from work as well. So when I had the had the stroke, the one number, number, one thing I was thinking about was, oh my gosh, I’m not going to be able to do any of that.

Dwayne Semple 8:48
I’m not going to be able to go in and wrench anymore. I can’t ride two wheels. What am I going to do? So, you know, following therapy and getting out of the hospital and rehab and returning home, getting through Christmas, I started watching videos and and I had a number of people who were inspiring me along the way. You know, different, different folks who were checking in on me or or calling.

Dwayne Semple 9:10
There’s another cyclist friend who winter winter cycles, and he gravel bikes and all sorts of things. And he would send me little videos of places he was going. And I thought that was amazing.

Dwayne Semple 9:19
And just recently, I met him on the trail, and I had to get a picture with him and post it on we have an Instagram account, of course, and as soon as I saw my I wanted to post that, because he really kept me, my tires pumped up and kept me moving anyway.

Dwayne Semple 9:34
I couldn’t, I couldn’t imagine what life was going to be like, not being able to to ride and work, for that matter, like right up until now, and I’m coming to the decision, actually in the next few days, or whether I’m going to be able to really return to work doing what I was doing.

Dwayne Semple 9:50
So that’s another chapter we’ll have to talk about another time. But I was coming into spring. Last year to 2023 with, you know, trying to figure out what it was going to be like. And all of a sudden I realized that I could still, I think I could still cycle if I used maybe a recumbent bike.

Bill Gasiamis 10:16
Let’s take a quick pause here, but we’ll be right back with Dwayne’s inspiring story in a moment before I continue, I wanted to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s not just a memoir, it’s a guide on how to achieve post traumatic growth after stroke. In this book, I share not only my own story, but also those of other stroke survivors who turned their trauma into an opportunity for growth.

Bill Gasiamis 10:44
If you’re seeking hope, resilience and practical steps to improve your life after stroke, this book is for you. You can find it on Amazon by searching my name, Bill Gasiamis, or by heading over to recoveryafterstroke.com/book.

Dwayne Semple 10:59
I was watching I’m not sure if you know of Paul Pritchett or not, he’s a climber from your area who fell and had was head injured, and he’s been his story is very inspiring as well, and I noticed he was on a recumbent cycle at one point in time, so I started researching. Anyway, there was a local gentleman eight kilometers from my house. There’s very few recumbent trikes in the area, and all of a sudden this appears on on a buy and sell, you know? So I went out, gave it a try and bought it anyway.

Dwayne Semple 11:35
Just to make my long story longer, I ended up on three wheels. And I’ve been, I’ve been having a hell of a time ripping around on this trike, trying to inspire, you know, some other, some other stroke folks as well, but, but more so for me, because it’s my, it’s it’s been my thing, and it’s been my release for many years. So the ability to get back out on the on the road, even on three wheels, not two, but three. I’m enjoying it yeah.

Dealing With Post-Stroke Deficits

Bill Gasiamis 12:03
Yeah so the deficit that you have, what does it stop you from doing? So how does it impact your body, and what does it stop you from being able to do, specifically?

Dwayne Semple 12:16
Well, when it comes to cycling, my my leg is weak. There are muscles that aren’t activated, and so my heel turns in and touches a crank arm on a bike, and I can’t pedal it without being clipped in now, having left sided stroke and being weak in my right arm, I can’t grip the hand grips of the bike. If I do grip them, I’m scared that I won’t be able to let go if I dump it on the other hand when I when I try, I can’t hang on for any length of time. My hand sort of just opens up and falls off.

Dwayne Semple 12:47
Now I haven’t tried it in a while, because I’m so used to doing the the trike thing. Now, my walking is limited the bit of the balance issue, and I don’t know it’s it’s not as much balance as it is. I don’t trust my left side and my my because I had been walking for the last two years with my knee locked. Basically I was walking and using my leg as a splint.

Dwayne Semple 13:13
As you know that that happens with those of us that that can get up and walk when we do start walking, that that becomes an issue. So I can talk about that piece later, but I’ve built up some great strength in cycling on that side. So walking, getting around isn’t an issue.

Dwayne Semple 13:32
I won’t say walking is an issue, but getting around isn’t an issue. I lost strength, of course, in my my left arm, so I’m very limited in what I can do. And I was, and I’m left handed, so I am not writing with my right hand. It’s, it’s hen scratch at best. Well, my left hand was pretty much hen scratch too. But if you ask any of my colleagues, but I, you know I’ve done, I’ve done pretty well with the exception of that. So everything I did, including brush my teeth, eat and write, everything was with my my left hand.

Dwayne Semple 14:02
Now, if I was playing ice hockey or throwing a ball or whatever, that’s all right handed, so none of that stuff was affected, not that I play a whole lot of ball and not that I’m playing ice hockey, but those are the those things I do, did with my right hand anyway.

Bill Gasiamis 14:18
So you’re fairly.

Dwayne Semple 14:19
Oh yes, yeah, no, go ahead

Bill Gasiamis 14:23
You’re fairly active. You were out on the bike, balance is a big deal, walking is an issue. Everything that makes you kind of comfortable being in the spaces that you’ve been in before is a little bit altered, a little bit not right. So it’s a little bit you have to find a new way to go about things.

Bill Gasiamis 14:46
Now, I love the fact that you found the three wheeler. Reason being is because when I have left side deficits as well. So when I first started riding my bike again after many years, after brain surgery, my left leg needed to be clipped in. Well, not necessarily clipped, but I could do okay with the stirrup on the pedal.

Bill Gasiamis 15:08
And then what was happening was I’d get to a stop where I’d need to put my foot out, and I’d go to put my left foot out and forget that it was in the stirrup because I couldn’t feel it. And then instead of putting my leg down, I would fall over, come to a stop and fall over. And then that happened about that happened once. And then one time, riding the bike in our central business district, there was some construction work happening in that.

Bill Gasiamis 15:45
We call them lollipop guy with the stop sign road stopped me and said, Get off the bike. You’re going to have to walk it, just for here, because the roads closed. And exactly the same thing happened. I went to put my foot down, and it didn’t come out of the stirrup, and I fell again. And then I got sick of it, because what was happening is my foot was fatiguing very my left leg was fatiguing very, very quickly.

Bill Gasiamis 16:16
Even though it could sit on the pedal, it could do the movement. And sometimes my left arm, my left hand, would let go of the handlebars as well, and I’d find myself, you know, kind of in the worst scenario, letting go of the handlebars because my hand didn’t realize that it needed to continue holding on.

Bill Gasiamis 16:40
It would just kind of forget to so it was by chance, somebody mentioned that an older guy who was riding a bike mentioned that he had bought an electric battery operated bike that supports the pedaling. It doesn’t pedal for you. It just gives you a little bit of sort of, what does it give you, gives you a little bit of a support in that peddling motion.

Dwayne Semple 17:08
It’s an assistant. It is yeah.

Bill Gasiamis 17:09
Yeah, assistant, and then the foot wasn’t fatiguing. When I was doing that pedaling, my left foot wasn’t fatiguing. And I could ride for an hour. And therefore, because I wasn’t putting in so much effort, peddling, my left arm was also not fatiguing, and I could stay on the bike for longer, and I didn’t need a stirrup, which meant that when I needed to stop and put my foot down, it would work as per normal. And it was such a relief to be able to get back on on a bike and get moving.

Bill Gasiamis 17:11
And I know there’s a lot of stroke survivors who have found the three wheeled bikes, and that has enabled them to feel like it felt to be out and about, even though you’re sitting on your butt and you’re kind of reclined rather than upright in a bike, it’s they get the same sense of satisfaction being out there.

Getting Back Into Cycling Again After A Stroke

Dwayne Semple 18:06
It’s actually a better sense of satisfaction in some ways, because I see a lot more now sitting back and I’m able to look around. I don’t have to worry about potholes while I still have to worry about potholes, but I don’t have to worry about getting chucked off my my bike as easy and to I guess I should also preface this with the discussion around how I last year, I was in a ride with a group of people, and I was riding with a doctor friend of mine, and we were riding a recumbent trike, and we were kicking ass, if you will.

Dwayne Semple 18:38
When we were climbing hills, we were passing all our counterparts on on bikes, on bicycles. And they had, you know, 29 inch wheels, 2700 C wheels, and we were traveling on these 20 inch wheels, like is on my track. And you know, Mike would reach back, and I’d High Five him, and we would pass all these folks. And what I found out was he had a hub motor in the back. It was so quiet I didn’t even know it was there.

Dwayne Semple 18:59
And so he would turn it on as we were going uphill. So when I get home, I bought one, so I put a hub motor on mine. The thing will do 60-65, kilometers an hour. Now, don’t tell anybody, it’ll go really fast, but I don’t use it.

Dwayne Semple 19:13
I’m only using it for hills. And so I’ve had a lot, you know, I’ve done some charity rides already this year, and and, you know, I’m doing, you know, 80 100k a day kind of thing. I’m not peddling that every day, but when I do the rides, I’m doing that, and the electric assist has been such a great help. And I’m able, you know, to feel like I’m still part of the team and part of the game, because I can keep up and and I can ride along people, and I can assist the people who are slow, like, kind of one of my jobs was always sweet.

Dwayne Semple 19:40
I always want to take care of everybody and make sure they’re going to make it. Because everybody, everybody finishes right and, and so every hill that people need assistance climbing, and that sort of thing, I was always involved in that, and, and now I can do it again. I didn’t want to feel like I was the one they were helping. And this has allowed me to allowed me to do that. So.

Dwayne Semple 19:59
So this weekend, coming up next, Saturday, Sunday and Monday, we have a paramedic ride in Bridgewater, Nova Scotia, which is about two hours from here, and we’re going to Cloverleaf, and do probably read around 100k a day for the three days. And so I’m really looking forward to to getting together with my with my colleagues to do that.

Bill Gasiamis 20:19
Sensational, I love it now with the etanercept, the snake oil salesman stuff is interesting. I just watched the interview yesterday. The very first interview that I ever saw about it was done about nine years ago with a reporter from 60 minutes Australia. He traveled up to Dr Tobinick’s practice, he met some stroke survivors.

Bill Gasiamis 20:45
They had conversations before, they had conversations after, and they reported on two good outcomes during that particular 60 minutes episode. And then they’re interviewing Dr Tobinick, and Dr Tobinick is giving his feedback on what he’s able to achieve and the things that people have experienced. And then at the same time, he’s speaking to stroke survivors, and they are reporting back amazing outcomes.

Bill Gasiamis 21:15
And then he goes to a neurologist who is the opposing view, and he does talk about it as being snake oil salesman kind of things. And the reason he does that is not because there hasn’t been results, is because there hasn’t been studies done that he can refer to where he doesn’t have to take the word of Dr Tobinick for it. And it’s not that etarnercept isn’t something that hasn’t been around forever.

Bill Gasiamis 21:49
It’s off label, which means that it’s not patented anymore. And as a result of that, there isn’t an ability for anybody, as a pharmaceutical organization, for example, to own the rights to etanercept on their own. And as a result of that, nobody’s spending any money so that they can flog etanercept to the rest of the world and say ‘Hey, use this product for everything, like they do with other medications that are brand new, for example, that they invented.

Bill Gasiamis 22:20
So I think it’s a little bit dishonest when somebody does a negative version of about a product where there’s no evidence, because nobody will fund the evidence. I think it’s a little dishonest, like until somebody has funded the study, and that has been proven one way or another. I don’t think anybody should have the right to call out somebody no when the proof should be in the pudding.

Bill Gasiamis 22:58
To an extent, you know, evidence of somebody actually using it and walking is evidence like it’s legitimate, even though it hasn’t been written down and put in, put into a study. And when you’re a stroke survivor, and regardless of what you’re recovering from, some people need hope instead of having that hope diminished. And that’s the part that isn’t spoken about enough.

Bill Gasiamis 23:30
The ‘Why is this thing considered by some to be snake oil? That’s the part that isn’t spoken enough. It’s not because it hasn’t worked for some people, it also hasn’t worked for some for some other people. So that’s important to note. It doesn’t work for everybody, and it’s usually the type of stroke and the deficits and whether or not that person has any recoverable areas in the brain.

Perispinal Etanercept Treatment Expectations

Dwayne Semple 23:59
That’s correct. And Dr Tobinick is really good about when you have your first conversation with him, he is very upfront. He doesn’t say this is going to work for you. I’m selling you this wonderful product, and I’m going to stick a needle in your neck and you’re going to walk again. He by no means does he do that. He gets your medical record ahead of time, and he tells you that, you know, he said, Okay, where your stroke is? We’ve had some luck there. We’ve had some we’ve had some good luck.

Dwayne Semple 24:23
He said, I would expect this is what’s going to happen. You’re probably, you know, going to get, you know, sensation back and you know in your limbs, potentially, if you don’t have it, you’re going to your stroke, pains are going to go away, hopefully your your specificity lessens or goes away. We would hope. But I’m going to tell you that probably whatever you’ve gained in the use of your arm and shoulder right now, you’re probably only going to gain 40% of what you’ve already gotten, and you’re probably, you know, so he was, I felt very it was very honest.

Dwayne Semple 24:55
He didn’t give me any high hopes. He just gave me some stuff to think about. He said I was young, I was a good candidate, and I didn’t see any song and dance about it. He talked about him that he didn’t talk about it the patient specifically, but he talked about a patient who was from the area that lived in, in a place that was, you know, nearby me.

Dwayne Semple 25:18
And he and I are the only two so far that have from our, you know, from the province of Nova Scotia, that have gone now, there is, I know that you’ve talked with a friend of mine, Steve, who is, who is on his way this weekend or next weekend.

Bill Gasiamis 25:31
Steve Lawrence.

Dwayne Semple 25:32
Steve Lawrence yeah.

Bill Gasiamis 25:33
He’s going live on Monday, like in couple of days.

Dwayne Semple 25:38
Awesome, I will, I will certainly tune in. He’s got a great story. And he saw a comment I made, and it was probably your podcast that I had made a comment on. And he must research everybody, because he tracked me down. And I was just on my I was actually at the airport on my way home from Florida at the time, and so he came to see me. He does. He lives about an hour away from me. So he came and we met at a park and had a great walk with his dog and his wife, and had a great chat about it.

Dwayne Semple 26:14
And you know, I was very honest about what happened for me and I told a little story that I’ll tell you about another gentleman as well. But Tobinick is very it. Was very honest about it. And he also said, you know, 2% of the people that we have have zero effect. There’s there’s absolutely nothing. He said it goes from something very minimal, like numbness and tingling going away, to people that get up and walk more steps than they’ve ever walked and and so, you know, all of that combined was really ‘the Okay, Sign me up.

Dwayne Semple 26:46
So we reached out in February. I hoping, hoping that we would get to go to Florida in February, because it would be nice and warm there. And it was cold here at the time, but we went there. It was 30 degrees here. It was 42 there for a week, so it was very warm. We we went to Tobernick’s office for the first assessment. And they do, you know, the here, I’m not sure what they do in other countries, I really don’t know, but they do, you know, the Mocha test and a bunch of different things they do, balance tests. They get you to walk, and time you’re walking, and that sort of thing?

Intro 28:57
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 29:26
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Dwayne Semple 29:59
And then following the injection when you go for your second assessment. So I went for a second assessment, and they checked to see what your improvement is, and and they do some of those measurements again now, because cognitively, I was pretty good. As you can see, I was, you know, I don’t speak terribly. I had no real deficits that way, so it was hard to gauge a lot. But there were some things when I went for the second assessment.

Dwayne Semple 30:30
But anyway, following the first assessment, I went the next the next day, and had the had the injection. I’m I’m sure you know all about the injection. They do a paraspinal injection between the fifth and sixth vertebrae, and then they tip you upside down for seven minutes.

Dwayne Semple 30:48
I’ll tell you in seven seconds after I had the first injection, I had numbness that you know, started my set and it went left to my earlobe, and it only moved an inch, but it moved enough so that it cleared my tongue so I can taste again on the on the left side of my tongue, except in the very rim of it, because I was biting it all the time.

Dwayne Semple 31:11
And that got better, I could taste again. I knew that sensation when it changed. It was just like this warm feeling in my tongue. My tongue sort of got got better. I didn’t really notice anything. He said, can you put your arm up? Well, I said, That’s unfair, because I’m laying upside down. If I pick my arm off, it’s going to fall over my head, and you’re going to take credit for that where it’s where it’s gravity.

Dwayne Semple 31:34
And he kind of laughed, and they sat me back up again, and instead of having 50 pounds of weight in my arm, I had 25 now I still wasn’t moving at any, better the pins and wasn’t pins and needles that I had, I was a bit hypersensitive, and I the only explanation I can give you that would make you understand is that instead of, you know, when I when you touch Velcro, it felt more like thistles and thorns.

Dwayne Semple 32:02
It was a lot sharper, so the feeling was more intense, or it was a bit hypersensitive. If it was hot, it was fairly like, really hot, reasonably hot would be really hot, and cool would be cold, but ice didn’t, you know, I could tell the difference in temperatures, but so now it’s just numb, It’s not hypersensitive like that, the sole of my foot. By that night, the sole of my foot, I became ticklish again. So I’m, I’m jumping again. I was a ticklish dude to start with.

Dwayne Semple 32:20
So if I fell asleep with my hands on my abdomen and I twitched in the night, you’d have to peel me off the ceiling fan because I jump. So that might not be a good thing, but it’s a, it seemed like a positive sign, right? So we said, How about your stroke pain? And I guess I should mention that my trapezius muscle into my deltoid, down my my lats, down my back and around my shoulder blade. I had this two or three out of 10 achy nai stroke pain, and a lot of people have it.

Dwayne Semple 33:10
I didn’t realize that’s gone, there’s none. And so I was quite excited about that when I realized it was gone, because that was a little something like throughout the day, if I had a long, hard day doing something or doing nothing, and that was achy. It would make me a bit irritable, and I didn’t care much for that. I like to be irritable. I like to be a happy guy, and, you know, doing my doing my thing, but that and that, and that’s maintained since the very first injection.

Dwayne Semple 33:39
Anyway. What else so my my gait changed, I felt something activate differently in my I guess my lower back, or into my glutes. And the the walking stiff legged had changed to me being able to to kind of walk normally again. Now I’m still walking a little bit stiff legged, but I but I’m able to maintain an almost normal walk.

Dwayne Semple 34:06
It feels like I’m walking like a chimpanzee when I’m doing it, but my wife videoed me in a mall the next I don’t know if it was the same day or the next day after the first injection, and she posted it on on Facebook or Instagram and send it to family, just to say, hey, look what’s happened here, where I’d been, where I’d been walking, totally different.

Dwayne Semple 34:28
So that had changed. My gait is shorter, but I’m walking faster, so it feels better. What else? She says, my face looks better. I knew I noticed a facial droop on this side, but it’s not as pronounced now. And I was always rubbing the side of my face because I didn’t know if I was drooling or I felt like I was. I’m not. I’m hardly doing that at all anyway.

Dwayne Semple 34:55
And the other thing, these damn things so my readers. I seldom put those on now, I used to have them on all the time, if I pulled my phone out, or if I looked at a meal, if I was reading a magazine or reading whatever I needed to have these right beside me.

Dwayne Semple 35:11
And I put them away. And I have a little a little bag that I carry with my wallet and stuff in it, and I tucked my glasses in it now, and I forget sometimes to even take them out when I’m reading. And so I didn’t even realize that was a thing that.

Bill Gasiamis 35:30
And that was not related to the stroke. That was just eyesight.

Dwayne Semple 35:33
No, that was eyesight, I had started wearing readers probably a year before I went to my Eye-Doc, and she said, She said ‘Your vision is 20/20, what you need is more light. And I said, No, what I need is glasses. So she said, I’ll write your script for readers, that’s all you need. So I went to one of the local shops and just bought some readers, and now I have them laying everywhere. But I did find that once I had light, it made a big difference, but after the stroke, being in hospital, as long as I was, I always had these glasses on because I was always reading.

Dwayne Semple 36:10
I was always doing trying to keep my brain occupied. And the unfortunate thing is, always spent a lot of time on my phone too. And I, you know, criticize people for spending way too much time on their tablets and their phones. But here I here I am doing it. But anyway, that seems to be another, another benefit I had. I had a number of benefits, so the fatigue is the other thing.

Dwayne Semple 36:32
So I still get fatigue, but not like I did before. I would go out to my my bike shop and tinker around in the mornings until noon, 1230 come in, make lunch for my wife and I, and then I’d rest until, say, two, and go back out for another hour or two, and then come in and be in, be fatigued at dinner time.

Dwayne Semple 36:54
Now, I don’t spend the hour at noon doing anything. I barely even come in to make lunch. I just I’m there, you know, morning until evening and and we do dinner and and watch a little TV and go to bed. So my my stamina seems to be a little better that way. So I’m appreciating that as well.

Perispinal Etanercept Treatment Initial Results

Bill Gasiamis 37:12
Fantastic. So how many injections did you have?

Dwayne Semple 37:16
I had two. As I said, I went back in for a second assessment. Five days later, after the first injection, my scores had improved. My times were faster, my speed was faster, walking now this is them timing it. So if you want to be, you know, pessimistic and say, Well, you know, they, you really, you know, they just compare the times and add a couple of seconds, or take a couple of seconds off whatever. I don’t know, but it all seemed on the up and up to me.

Dwayne Semple 37:46
And I mean, and if I go back and talk about Steve again for a second, Steve was very, very critical about he wanted to be very critical about it, because he wanted to make sure he’s doing the right thing. And I’m like, I can’t tell you. I can tell you, you know, here’s what I what I did, and what I’ve been doing, and how this is how this has affected me.

Dwayne Semple 38:05
So following the second assessment, I went in for my injection. Now, if I may, I want to tell a bit of a side story, because while we were waiting to go in on the second day, or sorry for the second assessment, they wheeled a gentleman out who was in a wheelchair, who was atrophied on his right side in his wheelchair, head down, a facial droop, you know, obviously a stroke. I know the signs very well from my from my experience, of course, now, but for my profession as well.

Dwayne Semple 38:40
I speak to everyone. So I spoke to the gentleman, and he he was telling how he had had his stroke eight years before, how he was hoping that he could, he could he could walk, because all he could do is take a couple of steps to get, you know, to the commode, to the bed, to whatever he had moved from a Minnesota, to to Phoenix, Arizona, because he was so cold the last eight years following the stroke and so on. But anyway, he said, ‘Oh yes, we he wasn’t able to really use his arm a whole lot, because when he would move, it going to spasm, and he basically did it there, and it spasmed.

Dwayne Semple 39:21
So fast forward to the next day, when I was going in for my second injection, and he would have been there for his first his wife wheeled him out while she was waiting for their cab to come and pick them up. And he is his hand in the air, doing this the right hand touching one finger.

Dwayne Semple 39:38
He was he was doing that and I was amazed. So I said, did you get up and walk? And he said, I took about four steps. And so I was really terribly impressed with with that. And so happy for him, because he was elated. His face was like mine, like he was just smiling, and His face looked normal, and and so on. And his wife was was ecstatic. So hopefully that’s all gone well for. Him, but if that is what I saw like, I shouldn’t put it like that, because that is what I saw.

Dwayne Semple 40:06
But if, but if he was in as bad a shape as he was to start out with, and had all of those deficits and that happened, that’s, you know, that’s miraculous at eight years, but that’s fantastic for him and and you know that that was a bit more proof for me that things, things were, you know, going in the right direction, and that this wasn’t just, you know, just some voodoo medicine that was happening.

Dwayne Semple 40:35
Following that sort I digressed there, but I wanted to tell that story because that, of all things, even for the great things that had happened to me while I was there, that was a great thing for that gentleman. And I was, I was really impressed by that.

Dwayne Semple 40:49
Anyway, we went into the second injection. There was another gentleman there from New Zealand, I think, at that day, ahead of me, and they were making a lot of him because of the distance he had traveled. And so we waited a little bit, we went in and they, I talked with, with the doc again, about how things are going. And he did, he did the videos that he does I and so I’m online now. I’m youtube famous, my few minutes of fame on Tobinick’s office. But he, he asked a number of questions and did the second injection.

Dwayne Semple 41:30
And I didn’t feel anything, I didn’t feel a damn thing, and I was a little bit disappointed, but as a as I sat there talking to him, I could feel something that there was like something happening in my shoulder, and I wanted to play around with it and see what it was, right? So there’s a movement that I couldn’t do before, and that’s going from from my arm being up lateral and moving it straight out, that I couldn’t do, and now I can do it. So there’s a muscle that was activated but, but that was kind of the only thing following the second injection. And so, you know, for me, I feel, you know, very lucky.

Dwayne Semple 42:09
I’ve had some great support. I’ve had some fantastic, you know, fantastic support from friends and family. My wife is absolutely wonderful. I can’t say enough about all of the all of the hard work that she’s done. And she she sat by my side 12 hours a day for seven weeks while I was in one hospital, and was there for me the whole time. And was, you know, the biggest inspiration for me to keep to keep moving forward. And she keeps pushing me. And I’m, you know, I’m feeling great right now.

Dwayne Semple 42:39
If someone were to ask me if, if this was the thing they needed to do, I would say, I don’t know you need to do what’s right for you. Here’s what it did for me. And you know, I spent a lot of time trying to make up my mind, and I studied every little bit. I read some stuff that was negative, that made me feel bad about it, and there are things that I watched that I think are miracles, because I’m not sure that it actually, it was the power of the human body. I think that did it for some folks.

Bill Gasiamis 43:11
You think it was the power of the human body that did it for some you think it was a little bit of a placebo, perhaps for some people.

Dwayne Semple 43:18
Some people placebo effect, I’ve, I mean, I’ve, again, in different studies and different issues in medicine that I’ve seen over the years, I’ve seen people, you know, cured by placebo. You know, people who were thinking they were getting pain medication that we’re getting, you know, saline.

Bill Gasiamis 43:39
But in this case, there’s no placebo, there’s the actual injection. The placebo doesn’t really apply surely.

Dwayne Semple 43:47
No, no, but that’s the thing. And I’m a believer. They convinced me, but they also convinced me that it doesn’t work in everybody, so. You know the potential was there, so I’m and I went fully expecting to be disappointed. I know I shouldn’t say it like that. I was prepared to be disappointed, let me put it that way, that I wasn’t going to be I was willing to take the risk. So, yeah, I’m glad I did. I can’t say that I’m unhappy in any way, shape or form, other than it was 40 degree weather, and it was a hot 10 days while we were there.

Bill Gasiamis 44:28
40 degrees celsius?

Dwayne Semple 44:30
Yes, yeah.

Bill Gasiamis 44:31
My gosh, over 100 Fahrenheit. And what did it cost you?

The Cost Of Perispinal Etanercept Treatment

Dwayne Semple 44:41
It was $8,400 US currency for each shot. So Canadian, the trip cost me 30,000. That would have cost me $30,000 Canadian, so that’s, you know, that’s my hotels rent, you know, we had an Airbnb, so place to stay, food to eat, transportation for my wife and I, and then the two injections. So it would have been about $12,200 per injection, Canadian, I think, is how it worked out, somewhere in that vicinity.

Bill Gasiamis 45:17
Right, It’s a lot of money, in your case, money well spent. And that’s the challenge that other people sort of go through, is that, you know that, why is this guy charging so much for an injection that’s off label and blah, blah, blah, you know, there’s a lot of conversation about that, and I’m not sure whether that is, whether there’s any reason to have that conversation or not. The guy is doing amazing things, He’s has to be able to charge an amount of money that’s going to make it worthwhile.

Bill Gasiamis 45:59
That is why nobody else is doing it? Because perhaps they don’t see there as being any money in it. He is improving people’s lives. And I imagine he would have a lot of people who haven’t had a good result struggle with that, and I imagine that he’s struggling with, not struggling, but he would have people that are going after him, you know, at risk of people going after him legally and all that kind of stuff. So there has to be a buck in it, otherwise nobody.

Dwayne Semple 46:35
Wouldn’t be worth it. And he has, you know, he has a number of staff. So he is, he has probably three or four people that that are office staff, and then he has another half a dozen, at least, assistants that do the assessments and things for him. So, you know, he has to have, I would say they’re now, I didn’t ask everybody what their their jobs were, but there were occupation I know that there were two occupational therapy folks there, as well as as well as sort of residents that were working with him.

Dwayne Semple 47:06
One girl who had been working with him for a while that was going off to back to school to get her doctorate. And there was a another girl who had just come in from Brazil, who was had studied as a nurse, nurse practitioner. So those were the, you know, kind of the limited number of people that I talked to while I was there, but I pretty much had the same, the same team that worked with me, excuse me, during the two injections.

Bill Gasiamis 47:34
Yeah. So it’s not one guy on his own in a clinic just taking people in and injecting them, and then out of there.

Dwayne Semple 47:43
Sending them on their way. Yeah, no, excuse me. It does feel kind of assembly line like, but he only hit yes. He has six people a day, excuse me, and it takes about an hour, like we were there, probably two hours the second day and the second injection.

Dwayne Semple 47:59
But he wanted to talk about where I lived in Canada, like because his other patient, that was from Nova Scotia, lived lives only 20 minutes for me. And so he has a world map that sits behind you, and he has pins in it. And the pin, each pin is one person, but if there’s a cluster people come from a certain area, he puts more than one big pin.

Dwayne Semple 48:20
It puts a bigger pin in to demonstrate, you know, 10 people or whatever. And so we were talking about the area that we live in, because this area, we have the highest tides in the world in this area called the Bay of Fundy and and they it’s kind of like white water rafting on it when the tide comes in in this in the summer, from, you know, the end of May, until September, into September, people ride these waves when they come in.

Dwayne Semple 48:45
So they go right from right from sea level, right from the ground, as the water’s coming in, picks these rafts up and things, anyway, we had this great conversation about about the about the the title, or rafting and things that happened here. And he’s very interested, you know, and in the the seafood that they they get out of that area, you know, the clams and oysters and mussels and that sort of thing.

Dwayne Semple 49:08
So we had a great conversation, at one point, I’m thinking, this guy just wants to talk about where I’m from. He’s not interested in sticking a needle in my neck at all, right, so, but he was, he’s very personable, and he was really quick down to earth.

Dwayne Semple 49:22
You know, he’s even even dug out a few of the studies and, you know, pictures of things when they did, when they were testing into intercept on lab rats and things and the folks that were trying to disprove his his theories, and actually proved him correct by making their own mistakes, according to him, in the videos and things that he was showing me. So I thought that was, you know, there was, it was.

Bill Gasiamis 49:47
In the 60 Minutes interview they do a functional MRI, I believe, of one of the patients who has the injection before and then one of the patients after the injection, the same patient after the injection. Action. I’m not exactly sure how far down, but they do see a larger amount of activity in the brain after the injection, and it’s not immediately after, it might be a few days later that the person has the injection.

Bill Gasiamis 50:18
So they they have got a lot of evidence to show positive outcomes, not to mention the hundreds of videos on the Institute of neurological recovery YouTube channel now, which are pretty compelling as it is, so, I would encourage people who are listening and watching to do their own research and make up their own Absolutely, and reach out to people who have been been there before, and get some feedback. And also see, I’m struggling to find people who haven’t had a good result so I can interview somebody like that as well.

Bill Gasiamis 51:10
They’re probably I know them, they may not be as enthusiastic to talk about their experience. So that would be good if I could find somebody in that situation that would like to talk about it so I could also pull forward a balanced view of this, but at the same time, I’m not going to hesitate interviewing anybody who has had a tennis set, because the whole purpose of this podcast is to bring people to solutions, amongst other things.

Bill Gasiamis 51:38
And that’s what I want. I wanted. I wanted people to come to me and go, Hey, there’s this thing, and you should look into it, because somebody else has had a good result and somebody else hasn’t had a good result. But some, there might be some hope there.

Bill Gasiamis 51:53
That’s it. That’s what we want to do now. I appreciate the difficulty in funding such trip, $30,000 Canadian dollars is a lot of money, you know, to come by. And I would say that if somebody is very committed to doing that, there’s funds. There’s way to to raise funds as well. You know, there’s the, what do they call them these days, those GoFundMe campaigns.

Dwayne Semple 52:26
Oh, GoFundMe pages yep yeah.

Bill Gasiamis 52:27
Yeah, etc. so there are ways that you can raise the money and you can get creative. And if you really want to go and and try it out, I should, I would encourage you to do the work and find out for yourself. And you know, ring the office, go and see Tobinick, have the initial assessment, do whatever you need to do to feel convinced one way or another, whether you should go after it or not. So I’m really glad to speak to you Dwayne.

Dwayne Semple 52:56
I went to the YouTube channel, and I went through a number of videos, and I looked for anything, and I know that they could control it as well. They could, probably snip out anything that that people put in that’s negative. But I found nothing and the one there was one person that had a very inquisitive question, and I thought maybe they were being backhanded.

Dwayne Semple 53:19
So I reached out to them to see and they were like, No, my question was, and I said, well, I want to do the proper research, and I want to find out if, you know, if someone has had a bad experience, what it is, because there’s no risk like there.

Dwayne Semple 53:37
I’ve not heard of anyone who’s, you know, had a seizure while they were on the table or had another stroke, or anything of this nature, because that was a concern. And when I talked to him, he said, No, we’ve had nothing like that here. And so everything seemed very risk free. And so I went, you know, when I went to my physiatrist, when I talked to my occupational therapist, when I talked to my own physician, they all looked at me like I had two heads.

Dwayne Semple 54:00
But when I gave them my compelling evidence, which was what I did, I studied it, they didn’t all that they they basically kind of heard about it, but never really did anything of, you know, like never, looked into it, a whole lot themselves. They all said, Is there a risk? And I said, No. And so the I said, the only risk is losing my money by going and not getting, not getting anything out of it. And so at the end of the day, I did. I made the risk, I got some benefit, and I feel good.

Dwayne Semple 54:36
So, you know, I win in that case. However, you know, maybe the next person that goes and doesn’t get as much of an effect, or no effect, or yet, maybe they get up and walk again and, you know, and if that’s the case, then, then I am absolutely all for it. I you know, I said everybody. Was, reaching out with all their home remedies and so on.

Dwayne Semple 55:04
You know, using psilocybin, like eating mushroom gummies, eating cannabis products, you know, all of those things are, are shown to help people in some way, shape or form, different herbal teas, and all these other things that people were pushing, but none of that stuff, any of the stuff that I tried, didn’t help me nearly as much as this did And would I pay, you know, would I pay $30,000 for some magic mushrooms to help me concentrate better.

Dwayne Semple 55:44
I don’t think so, but I certainly paid 30 grand to do this. So, you know, I but again, I did that with a lot of support. The money was mine. I’m a bit of a proud guy, and I didn’t put my hand out at all, but I did also I had some acute illness insurance that paid out when I had the stroke, and this was, this was what it was for. So I’m happy that I had that. If I hadn’t, I might have second guessed how this all went. But even even my financial people were like, there’s no risk to your health. It’s only money man, go do it.

Perispinal Etanercept Treatment Honest Feedback

Bill Gasiamis 56:27
You only live once. Man, I completely agree with you. Tell me about like, on a scale of one to 10. If one is zero, nothing happened. It’s terrible, and 10 is amazing. The most amazing things happened, and it’s fantastic. Go for it. On what’s your experience? What would you say your experience of the positive outcome? How would you rate the positive outcome, from one to 10?

Dwayne Semple 56:54
Well, if, if you were to say, nothing happened and obviously, 10, I’m cured. This would have been maybe a five, but the but the experience itself, for getting rid of the pain and changing some of the things and making what I’ve got left for life, which is hopefully another 40 years bearable, right? I’ve got a better quality of life because of it. You know, it that that ranks a little higher, that ranks, you know, that ranks up in in a 9 or 10.

Dwayne Semple 57:25
But that’s a personal view, not, you know, from from where I was to where I am, knowing that, you know, I had no, I had no expectation that I was going to start throwing a baseball or something with my left hand or playing the piano.

Dwayne Semple 57:37
Oh, wait, I never played the piano to start with. But that would have been really amazing. However, I, you know, I’m really happy with what, with, with how it went. I could I, you know, I could be walking normal, and I could be, I could be, you know, have all my movements. I could be back on my two wheels and, and, you know, living life carefree, that wasn’t what I expected. That wasn’t what I had studied that would happen and and, you know, you know, there were some small miracles that happened, and I certainly appreciate it.

Dwayne Semple 58:09
I appreciated the candid, the candidacy that that he had, Dr tobernick with me about what, what potentially could happen and what may not happen, and and you know, here I am happy, happy and willing to to support others, and I’m doing this. I’m doing that every day, so.

Bill Gasiamis 58:33
Yeah, and you’re willing to talk about it and share your story. And that says a lot as well. So what about how long has it been since the injections? Now, what’s the time that’s elapsed?

Dwayne Semple 58:45
25th of July. So, you know, we’re, we’re about a month and a half now-ish, kinda, yeah, I guess about a month and a half.

Bill Gasiamis 58:55
Is there any discussion or understanding about whether or not the the the results that you got wear off or continue to improve over time. What’s the longs of crisis?

Dwayne Semple 59:10
I certainly asked that question. And, you know, they say some folks that had their injections 12 years ago have not had any fallback. There was, there’s no returning symptoms. Others had, you know, fall a month following, we’re back for a second injection or, you know, had issues pop up. But on the most part, a lot of people have, have had no, you know, that had positive results, have had no recourse, like, nothing’s come back.

Dwayne Semple 59:43
Although some people, you know, of course, have secondary strokes and that sort of thing following. So again, they were pretty honest about all of that as well. They, they, you know, they, they basically tell you, now you need to, you need to this, this, you’ve had positive results now. It’s up to you to maintain your health, right?

Dwayne Semple 1:00:02
So don’t start smoking again. Don’t like, I wasn’t a smoker at the time, for sure. But you know they’re like, because, because you had a stroke and you haven’t smoked in six years now that you can, you know, move your arms again. Don’t start putting cigarettes to your mouth. You know that that’s sort of the thing, that they’re that they’re that they’re they’re telling you, you know, take your medicines, stay healthy, eat good food, right?

Bill Gasiamis 1:00:25
Personal Responsibility. It’s really, definitely, absolutely necessary for somebody to take action to prevent themselves from having another stroke and also to keep the gains that they have received achieved. It would be terrible for somebody to go through all of the trouble that stroke has created, have an injection, recover, and then start in bad habits again.

Dwayne Semple 1:00:56
I’ve never, you know, I I’ve been a paramedic almost well, I have been a paramedic for 40 years. I started when I was young, back in the days when funeral homes and it ran ambulance services, I never once had a patient say to me, geez, I wish I had to work harder. You know, I’ve always had a lot of people say to me ‘Boy, I wish I had taken better care of my health.

Dwayne Semple 1:01:17
Right? You hear that all the time. And so for those that don’t, and I was one of them. I mean, you know, when I went into management, I was eating, eating, you know, fast food for meals and things at meetings and whatever, not exercising, stressed out, go home and go to bed instead of going for a walk or whatever. I gained a lot of weight. And I had comorbidities. Both my mom and dad had comorbidities, you know, heart and heart disease, strokes.

Dwayne Semple 1:01:44
My mom was a brittle diabetic, and so I developed diabetes in 2020 during covid, I was taking oral medications and trying to keep my sugar down with diet and high blood pressure had set in.

Dwayne Semple 1:01:58
I never had a high blood pressure reading in my entire life until 2020, and so there’s two, two big risk factors right there. And no doubt in my mind that that those were certainly the major contributing factors. You know, the the diabetes and the high blood pressure and my stress level. Of course, working in emergency health services. Is a big thing. So.

Possible Cause Of The Stroke

Bill Gasiamis 1:02:26
What was the underlying cause of the stroke?

Dwayne Semple 1:02:31
They didn’t really say a whole lot about what it you know, there’s a lot of what could be’s, but I will tell you that my physiatrist and my OT my occupational therapist are both. I go in. I just had a meeting on Friday with my, my physiatrist and I meet with my occupational therapist this coming Monday, and we’re going to discuss my return to work. And they don’t want me to go back to work.

Dwayne Semple 1:03:01
They want me to finish out on my long-term until my retirement, and go that way. They figure if I go back with the high pressure that I have in the particular job I have, that chances are I’ll probably have another stroke. And they don’t want that.

Dwayne Semple 1:03:20
They said, I’ve done a lot of work to get back on my feet and and, you know, try and inspire others to do the same. And I feel really good about that. But, you know, I also want to feel as and I’m sure you know what I’m talking about, you want to feel like you’re a productive member of society.

Dwayne Semple 1:03:40
You don’t want to lay down and die, and I don’t want to be a guy who gets up in the morning and, you know, goes to the coffee shop and sits around with a bunch of guys 10 years older than me who’ve all retired or whatever, and and have my coffee and tell my lies and go back home and read the newspaper like I want to be productive.

Dwayne Semple 1:03:57
I really, really do. So I’ve, you know, I volunteer with a number of groups right now, and I’m still writing, and I have another young chap who was a bit of a superstar here, and he was in a bad accident a number of years ago in 2020, I guess it was. And then while he was in when he had his accident and was unresponsive, he had a stroke. And so he and I walk and talk and move very, very similarly.

Dwayne Semple 1:04:31
And so his friends were a little concerned about him, because, you know, this is a guy that’s been famous since he was 16 years old. He only lives a few kilometers from me, so I go pick him up and take him out for coffee now, because they were concerned.

Dwayne Semple 1:04:46
So we go do coffee and things and exercise together and whatever. So that’s given me a bit of a purpose, right to to kind of help him along. So maybe someday you’ll get to interview him. That would be, that would be quite amazing. He’s an interesting character.

Bill Gasiamis 1:04:59
Yeah. Why not? So what’s it like being the patient instead of the support?

Dwayne Semple 1:05:05
For the first for the first time? Right? So I was 55 years old when I had my stroke. It always talked about retiring at 55 but that’s not the way to go out, and I had never been admitted in hospital myself, ever. I’d been in for stitches. I’d been in for coughs, colds and that sort of thing, you know, X rays, ECGs, you know, health checks and that sort of thing.

Dwayne Semple 1:05:34
Never been a patient. And I was told I was the best patient they ever had in the stroke unit, because I did not want to bother them. I would not ring the bell, I would not like I only rang the bell twice in seven weeks while I was there. But of course, I had my wife who sat beside me for seven weeks too, so that was the bell ringer through the day. But I certainly I I didn’t want to inconvenience anybody at all. Again, I had, I had, you know, a pretty good grasp on things. I was able to, you know, move, reach the things I needed to reach, and get where I needed to go. I could get to the washroom.

Dwayne Semple 1:06:14
You know, they had me up showering the next day, and I basically learned how to shower with one arm and one leg on a commode and that sort of thing and and so I wanted to to get back to whatever the normal was going to be, I wanted to get there quick. And so I they tell me again, I was a good patient, but I certainly didn’t think I was, because for me to be a patient was a bad thing, right? I was always trying to help the guy in the bed next to me or whatever, right? So, unfortunate trait I think I got from my dad.

Bill Gasiamis 1:06:50
Yeah, that’s pretty cool. Though, you still have a lot of insights, you’re a paramedic. Somebody needs help next to you, well, you can shed some light on that. You’re not taking their blood pressure, you’re not injecting them with anything. You might just chat to them. There’s nothing wrong with that.

Dwayne Semple 1:07:08
Well, I tell another quick story. So when I went in by ambulance, and of course, it’s my own cruise, right? It’s people I know that come to pick me up the night I had the stroke, I had numbness in my hand, and my wife had her hand on my chest, I guess she was asleep, and I kind of wiggled to get her off me, because I just felt like it was the weight of that, her, her shoulder, whatever that caused that. So then I realized my leg was feeling the same. So I got up and took a step, and what I found was that that my step was funny, and my foot felt funny. I took the second step down and went.

Dwayne Semple 1:07:45
So anyway, I hollered. She called 911, paramedics came and took me into the hospital. And when I get there, of course, there’s some of my old staff who work as paramedics in the ER, are there, and they’re like, Oh, my heavens, what happened to you? And oh, you seem good. You know, your grips are good, and so on. So at that time, I was using both both hands. I could touch my nose and touch the doc finger both arms, and things were coming back. It felt a little weird, but things were coming back.

Dwayne Semple 1:08:13
So it was kind of like it was transient. And so I thought, wow, I’ve had a TIA. That’s really bad, right? I needed to go to the washroom. So I begged the nurse, please don’t let me bring a commodity and let me go to the washroom. So I walked down to the paramedic washroom, which is at the end of the hallway, and she came with me to make sure I didn’t fall so I felt good about that.

Dwayne Semple 1:08:32
When I got back, they had my I guess they were prepped to send me for CT scan. My wife has an autoimmune condition, and she had an attack while I was there, and it mimics heart attack in a way. She has chest pain, but it’s called Hae.

Dwayne Semple 1:08:48
It’s hereditary angioedema. So she had an attack while I was down having my CT scan. So I get back, and the doctors says, says ‘Dwayne, now I need to tell you, Roz has developed some chest pain, and I’m like, okay, so she it’s an Hae attack. Here’s what you need to do. You need to get the large bore IV, and you need to start giving your fluid. If you give her a bit of morphine, that’ll make the pain go away. And she takes a c1 esterase inhibitor called Baronet.

Dwayne Semple 1:09:14
If you give her that, okay, IV, she needs 4500 units. And she also should take her auto or, it’s not an auto injector, but her preload injection of fears there, which is called a catamaran.

Dwayne Semple 1:09:26
So it’s a it’s kind of like the epinephrine to a bee sting or an anaphylactic reaction. And the doc’s looking at me like, I have two heads. And he said, Dude, you’re having a stroke, and you’re telling me how to do this. And I’m like, I’m sorry, that’s who I am. So anyway, when the medication came down, they didn’t know how to mix it, because it’s if they mix a liquid, like a little vial of saline into a dry, a dry medicine and makes a sort of a viscous stuff, anyway, so I get up and I mixed it for them.

Dwayne Semple 1:09:55
They were, like, totally lost at how to mix it. So he’s, like, you mix that for them, like, anyway. Right? So he came in and said, You know, I think probably when she’s done and your, your your symptoms are going away, we’re probably going to send you home. So I said, Okay, great. He said, you just rest and and have a nap. And when we go to do shift change, I’ll wake you up and test again.

Dwayne Semple 1:10:19
So he woke me up again at five o’clock at shift change, and I felt a little bit weird. I put my hand up over my head, and it would fall my left hand and and he said ‘That’s interesting, but still good. I’d kind of equal grips at that time.

Dwayne Semple 1:10:37
He said, Roz is still sleeping, but when she wakes up, I’ll probably send you home. So anyway, I did. I just fell asleep again. One of my colleagues came in to check on me, to ask if I needed anything else. And I he. He didn’t turn the light on. He just opened the door. So the light came in through the door, and I reached up to pull myself up in the cot, and I couldn’t move my left arm. And so of course, then he hit the emergency bell, and that’s where it all started.

Dwayne Semple 1:11:00
So I went down for my second CT, and they still didn’t see anything in the CT, and they didn’t get an MRI for another two days. Well, another, yeah, it was over 24 hours before I had the next before I got the MRI, and that’s when they found the where the stroke was. But they found the clock. Was it a clock? Yes, yeah, yeah. It wasn’t a bleed. It was a quad. However, I had had symptoms and and I’m going to forewarn anybody that may be listening to this or watching this, that if you have the slightest symptom that may seem like a stroke, for God’s sakes, go get checked.

Dwayne Semple 1:11:34
Because what happened to me on Thursday prior to that was we had taken our grandkids to the exhibition, I had left work early to go with them. And of course, following covid, this is a an agricultural exhibition. So they have, you know, farm animals and barns and that kind of stuff. So, so I went to go with them, and I went a bit later, and as I’m walking across the parking lot. I have this what, what now is dropped foot. But I have a I had my toe on my left foot kept dropping to the to the ground.

Dwayne Semple 1:12:09
Didn’t happen all the time. It was a couple of times during the steps in that walk for probably 150 meters, I went into one of the exhibits, and they were selling tickets on a handmade quilt or something. So I bought tickets, and when I went to write, and again, left handed, when I went to write my name, the pen felt funny in my hand, and I was a little bit, I was a little bit seven years old again, just for a few seconds.

Dwayne Semple 1:12:34
I had no idea. Now, I’ve been dealing with strokes 40 years right? I’ve seen the best and the worst in symptoms in people. And I know the symptoms off by heart. However, for myself, I was like, I never even gave it a second thought.

Dwayne Semple 1:12:51
But when I when I would, when I went down that night, when I had, when I had the actual, the actual stroke itself on the Saturday night, I knew damn well what it was, right? And that came back to me that two days before, and I’m like, Damn I wish I had done something about it. And I think that had a lot to do with why I didn’t get thrombolytics.

Dwayne Semple 1:13:10
They didn’t give me thrombolytics, and I told them upfront, you know, I had this and didn’t realize, and I’m not sure why I didn’t get, didn’t get, didn’t get the thrombolytics at the hospital, really, other than neuro wasn’t really willing to do it, knowing I had symptoms a couple of days before, because we still give TNK for heart attacks, even if they had symptoms two days before. Right? So, but maybe there’s something neuro.

The Hardest Thing About The Stroke

Bill Gasiamis 1:13:42
Yeah, maybe neurologically, it’s a different risk, interesting. So what would you say was the hardest thing about stroke for you?

Dwayne Semple 1:14:04
Right now, playing with my small grandchildren is the hardest thing that I can’t do, not thinking about myself, thinking about them, but I, you know, I can’t crawl around on the floor and I can’t chase them. I’ve got a I’ve got a four I have a four year old granddaughter. I’ve got, we have eight grandkids. So they range in age from nine years, 10 years old to just around two months old, and all sizes, all sizes in that category. But the four year old, she comes here, I can’t keep up whether she exhausts me in an hour.

Dwayne Semple 1:14:40
Doesn’t but I think if I was healthy, hadn’t had the stroke, she’d still do that to me. But that’s the one thing that I’m real that’s really bothers me is the ability to play with these kids, because that’s what I did prior to right? I love playing with the grandkids and stuff. However, it doesn’t. It limits me. It doesn’t, but that, if you’re just say, what’s the one thing that bothers me the most?

Dwayne Semple 1:15:03
That’s the thing that’s on my mind, like, it’s kind of like I’m not the same, and I can’t do what the other grandparents and their parents can do with them and and for whatever reason, psychologically that I struggle with that, probably the knowing that potentially, very soon, I’m going to find it that I can’t go back to work and do my craft is going to be tough as well. But I’ve also come to the realization that my health is far more important than a stupid job, right?

Dwayne Semple 1:15:34
So, and I’ve, I’ve I’ve stuck all the needles and people, and put all the airways and people’s, you know, I’ve saved all the, all the lives that I think I needed to in order to make myself good and be right with the world. But I certainly, I certainly am going to miss that.

Lessons From The Stroke

Bill Gasiamis 1:15:52
Fair enough. What has stroke taught you?

Dwayne Semple 1:15:57
Wow, In watching some of the other people that I’ve encountered in stroke units, throughout rehabilitation and and, you know, just in sitting in waiting rooms, I’ve learned so much. And I I’ve looked the big thing I’ve learned is that I’m probably one of the luckiest guys in the face of the earth with it, in the amount of friends and support that I have that poured out for me. But I’ve also learned that there are there are folks, and I think it’s probably due to the stroke that they struggle with, the ability to to navigate and be positive about it.

Dwayne Semple 1:16:42
They feel they’ve lost everything. And I had one gentleman that was in a ward I was in for a short period of time who was a big deal in his day. He was responsible for some pretty cool stuff, and I didn’t know that at the time, but he wouldn’t go to his appointments and things. And he was, you know, but the guy could get up and walk with a walker and wheel a wheelchair like crazy. But he his bout. His balance was his issue. He couldn’t, you know, he could use all his limbs and walk and talk and whatever, but balance was his issue.

Dwayne Semple 1:17:15
Now, we couldn’t climb stairs, or fast enough he needed to be able to climb 15 stairs to get to his apartment. And so they took him home to do that. And when he when he was exhausted, when he got to the top, of course, following the stroke and the fatigue, all the all the factors that factor in, he was like, they’re gonna have to put me in a home. And I was like, No, man, you don’t have to go to a home. So anyway, I found out about what he did, and I said, Wow, that’s amazing stuff. You need to tell me more about that.

Dwayne Semple 1:17:43
So I was trying to inspire him a little bit to to think about those days and think about who he actually is and and the fact that if he, you know, if he goes to his therapy, like classes and things, goes to the goes to his sessions, he’s going to get stronger. He’s going to be able to do it anyway. I had to go to my oldest son’s wedding in Ontario. I came back with covid, so they isolated me for 11 days, and I couldn’t get near this guy for 11 days, and when I did, he was gone. He had checked himself into another into another hospital, a medical unit waiting for placement in a nursing home.

Dwayne Semple 1:18:18
The guy’s 66 years old, like he’s young, and he should have been, you know, he’s got such great knowledge and and stuff. But anyway, you know, my education, in in what I how I feel. I think I always think everybody thinks the same way I do, right? And so I wasn’t affected, you know, by the stroke the same way, obviously, that he was. And so my ambitions, and I still have ambitions and goals and things.

Dwayne Semple 1:18:33
And I think he potentially felt that he couldn’t go any further and and that was a struggle for me that bothered me worse than anything, you know, watching some of the other, some of the other folks that that weren’t inspired to do anything.

Dwayne Semple 1:19:06
Lot, a lot of lessons, If I were to do anything over again, well, if I were to do it all over again, when I was in therapy, I had to work a hell of a lot harder. Not not that I didn’t while I was there, but I I I, I want more now, because I’ve gotten some I’ve gotten that, you know, I’ve gotten some distance, and I feel good, and I think if I had had worked harder, I would feel better. Potentially, that’s all wrong. That may be in my head, right? so.

Being A Coach Recovery Coach

Bill Gasiamis 1:19:45
Yeah, distance is important, though. You mentioned distance from the incident, as it does like time apparently heals all, all wounds. Distance does allow people to recover, come to terms with things, adapt, change, overcome. It does allow people to do that. And you can look back in 12 months, 18 months, 24 months, and things can change. I coach stroke survivors privately, and all the people I coach are on Zoom.

Bill Gasiamis 1:20:25
And what does a stroke recovery coach do? Not much. I just listen and tell them that we’re going to check back in six months, 12 months from now, and we’re going to see how far you’ve come. And my job is to remember where they were and to report back on how far they’ve come, because often stroke survivors don’t remember how bad they were, they remember, they focus on what they can’t do, and they get sort of stuck there.

Bill Gasiamis 1:20:53
And the two people who I spoke to yesterday, both of them were one of them was 18 months post stroke, and the other one was 12 months post stroke, and I hadn’t seen them because it’s up to the client to choose their next coaching session. So, I don’t force it upon them or anything like that.

Bill Gasiamis 1:21:18
They come when they’re ready, and the person who’s 18 months out had aphasia, and I had never had a conversation with them in the 12 months in the in the nearly 18 months that we’ve been discussing with his partner, stroke recovery and all that kind of stuff. And I had a discussion with him directly, and even though he was stuck with some words and some challenges about expressing himself, we actually had a conversation. And I had to remind him that you and I, my friend, I said to him, have never spoken before together.

Bill Gasiamis 1:21:59
It’s always been done on your behalf, and even then, we didn’t actually know what you were saying, that your wife was passing information on that she assumed you were saying. And I could say that that was totally frustrating for you, because it was she was never right, and I never knew exactly what what was happening a so he was like ‘Hmm, okay, you know, he took that as a as reality, as truth.

Dwayne Semple 1:22:28
Yes, yeah. And then it’s amazing.

Bill Gasiamis 1:22:31
Yeah, and then the lady I spoke to is 12 months out, and she’s worried about her memory and all that kind of stuff, and she was a completely different person this time after a couple of months of not seeing each other, and I said to you, have forgotten how far you’ve come, because we couldn’t have this type of free flowing conversation. You were far more anxious, concerned, all that kind of stuff.

Bill Gasiamis 1:22:54
And now you’re talking to me about she’s almost she’s 78 years old. I said, at 78 years old, you are looking for your next business deal, and you’re negotiating with clients, and you’re putting presentations together. You weren’t doing that six months ago. So it’s really difficult, I’m able to notice how far they’ve come, and they need to be reminded ‘that it’s great.

Dwayne Semple 1:23:22
I do too, I think that, you know, I my, my personality changed a bit. I was, I was using a lot of four letter words, F sharps in particular. I was injecting them between syllables, and I’m sure that, you know, that a lot of people do, and people on chemo will tell you the same thing, that word, or a similar word, will be the a word that they use a lot.

Dwayne Semple 1:23:52
I looked it up, and there’s I forget where I found it, I copied it and put it, I took a picture of it, and it’s in my phone, and it explains that that people who have, who have had strokes, head injuries, concussions, that are on certain medical treatments, there were a number of things, will use the most.

Dwayne Semple 1:24:16
They’ll use a profound a word of profanity to be their most explicit word. And whatever their most explicit word, it could be fuddled, It could be, you know, ice cream, but they will use that, and they’ll use it between syllables sometimes. And that’s certainly what I was doing. But the progress even in that, because I knew I was doing it and I couldn’t control it, and so I was trying harder to control it.

Dwayne Semple 1:24:43
The other thing I was trying to control was emotion. I my tears would turn on just in a second. I would get so emotional about stuff. I did it once while we were talking, actually, and I didn’t know where it came from, but I did it again today. I, and it’s, it doesn’t happen as frequent as it did, because, you know, my my niece would call, and I’d see your face and I’d tear up, but I’ve got really good control over that now.

Dwayne Semple 1:25:10
And so that was a small thing that I recognized that had changed about me. You know, I was always kind of a heart on the sleeve type of person anyway, but that’s that’s come, you know, back to to the place where it was before the other thing.

The Pseudobulbar Affect

Bill Gasiamis 1:25:28
So there’s a term for that, that’s a Pseudobulbar affect.

Dwayne Semple 1:25:33
Okay, didn’t know that. Thank you.

Bill Gasiamis 1:25:34
Yeah, You need to look that up. Pseudobulbar affect, and is very common that people experience, some people experience uncontrollable laughing, and sometimes at inappropriate moments, instead of the crying and the emotion they get laughing. So I get that. I get the pseudobulbar affect response as well. And I’m 12 years post stroke, and I did a presentation on my book to a room of about 40 people recently when I launched my book and I cried.

Bill Gasiamis 1:25:46
I was supposed to speak for 20 minutes. I cried about four times during the presentation when I never expected that it was going to happen again, but I couldn’t rein it in. It just kept happening, and then I ran with it. I just kept going.

Dwayne Semple 1:26:25
Interesting theory on that. I must look at that, because folks with PTSD exactly the same thing, right? So I do peer referral work, or I did do peer referral work. I spent a number of years working with PTSD, mostly critical incident stress and that sort of thing, trying to get to it before it became PTSD, or here we call it, OSI – Operational Stress Injury and and, yeah, the tears come readily, and you know, people that are healed, who have who have come through, have come through on the other side who are talking about PTSD.

Dwayne Semple 1:27:03
They’ll openly burst into tears, and they’ll say, I’m okay. I’m okay, you know, I’m still a good policeman, I’m still a good firearm. And I just burst into tears, and I have no idea why. You know, don’t feel sorry for me. And so my son’s, my son’s a wedding I was talking about, it was just post stroke, about two months, and I had to get up and give a little speech.

Dwayne Semple 1:27:21
So my disclaimer I was, you know, that number one, I might throw the odd F sharp out, or maybe a whole lot of them. And then the other thing was that I might, I might burst into tears and, and please don’t feel bad about it. You know, they’re tears of joy at this point, but it’s just part of the stroke.

Bill Gasiamis 1:27:38
So my client, who I coach with aphasia, he could throw out an F sharp for every expression that he had. So I’m going to do it, and we can swear a little bit on this podcast, it was a ‘fucking fucking fucking fuck. I was like, wow, and every and he was so good at saying it, you actually had a sense of his emotion, what he was feeling, what he was trying to express. He was so good at changing the annunciation and the tone and the length and the sharpness of it that you could actually totally get, what, where he was coming from, even though you didn’t know the sentence.

Dwayne Semple 1:28:29
I’ve had patient I’ve had patients like that. And I remember an older gentleman one time we had taken into hospital, and nurse nurses were flabbergasted that that’s all this man could say. And this nurse kept saying to him, you can’t use this profanity here, you know. And he was ‘gibberish’ like he just kept at it. And he was, he was laughing at her, and that was, you know, he was making fun of that he knew damn well. He couldn’t get anything else out. That was all that was coming. And it was kind of, he was lashing it out just to see what she would do. Oh, yeah, you’re absolutely correct.

Dwayne Semple 1:29:00
I look back now. So I kept a file of photos and videos and things. So when I started going into physio, my wife would come in, the staff would allow her to video or take pictures or whatever she wanted, as long as they weren’t in them kind of things they didn’t want to be put on Facebook, and we never did, but I have a file of those photos of me, you know, in hospital, unable to move my left side from the time I got up and started walking.

Dwayne Semple 1:29:33
When I started walking with a parallel bars, when I went to a Hemi walker, when I went to a big cane, when I went to a smaller cane, when I went to a single cane, when I was walking on my own.

Dwayne Semple 1:29:45
I have videos of me the day that I decided that we were going to get on that trike and give it a try. I have the tears of elation when I rode the first kilometer on it like I was so elated that I could do it like you. I. I don’t know if you hit any of those milestones, but I hit a number of them and and I’m so proud of that, but I’ve it’s certainly been an interesting journey.

Dwayne Semple 1:30:12
And when I realized that this was the journey I was taking, and I didn’t have to worry about, you know, work and other people at this time, I just had to worry about me, I made it about me, although, like I said, I can’t take, I can’t take other people out of my, out of my, my script sort of thing. So when I see somebody that’s struggling, or whatever, I’m, unfortunately for me, I’m a helper, and I feel like I need to get my nose into it and help them out. Yeah, and I don’t know if that’s a it certainly helped me along. Let me tell you that it’s right, helps it’s made me purpose.

Bill Gasiamis 1:30:48
Yeah, it helps me, mate, let me tell you that I found my purpose doing the podcast and writing a book about “The Unexpected way that a stroke became the best thing that happened. You know, because there is so much positive feedback coming back my way. My YouTube channel is full of positive feedback for what the episode that the particular person listened to has done for them, or how it has helped them. My email inbox get I get 2-3-4 emails a week, people telling me about what a fantastic job I’m doing for them.

Bill Gasiamis 1:31:24
And it’s like, wow, I this is a selfish pursuit, I started it for me. I didn’t start it for them, but I’m but it’s such a what an amazing benefit, you know, to have a selfish pursuit that gives so much and helping is one of the key ingredients to post traumatic growth. So there, my book is a basically a book about post traumatic growth that I didn’t know the term when I wrote the book, so I didn’t put that information in there.

Bill Gasiamis 1:31:56
But since I’ve presented on the book a couple of times and spoken about it and looked into the research of post traumatic growth, one of the key essential ingredients is doing something for somebody else, volunteering or helping other people. And a lot of stroke survivors who I’ve interviewed will say that they immediately found a way to help other people, and if they haven’t done it yet, they’re saying, I want to help other people.

Dwayne Semple 1:32:23
So I had Rec. therapy, Recreation Therapy, they didn’t know I was in the facility until two weeks before I left, and they’d been there eight weeks. I play a drum, a Celtic drum called the Bodhran, and so it’s just a single drum that you hold and. Hold on one second

Bill Gasiamis 1:32:43
We’re good.

Dwayne Semple 1:32:48
There we go. No, it was somebody calling me on, not on Zoom, but on another medium there, anyway. So they found out about this drum, and there was a guy upstairs had played one. So he brought it down. We tried to harness it to me and tried to figure out how we could play. It wasn’t working out so well. So he said, Okay, you need to get a hold of the Tetra Society.

Dwayne Semple 1:33:10
And the Tetra Society is a group of engineers and and volunteers that come together and and they they build adjunctive equipment for people so that they can do the things they love to do, you know, when they have a disability. So in my case, you know, they would build me an adjunct so that I could put pressure on the back of the goat skin to change the tone of the drum. And I was like, okay, so they filled out the form, sent it to the Tetra Society.

Dwayne Semple 1:33:34
So the guy from Tetra called and wanted to talk about it. So he said, So what do you know? What do you like to do? And I said, Well, I take her with bicycles. You know, I’m a bike mechanic, and I do this sort of, Oh, really. Well, we have a client who’s this, would you be interested in helping us out? So now I’m a member of the Tetris society. I help them out with a couple of things.

Dwayne Semple 1:33:54
Actually, I’m helping a gentleman who’s got a very rare disease build a flying shuttle for his loom so that he can weave. And currently, and it’s been a long process, but anyway, they still haven’t helped me with the damn drum, but I’ve been building bicycles and come up with inventions and ideas help them out. So I’m hoping that someday that I can go back to playing my drum again. But that is one of the things it does. It gives me pleasure, right to help out.

Bill Gasiamis 1:34:25
Why not? As we wrap up, the last question I’d like to ask you is, there’s people listening, the on our journey, the have a similar path or a different path after stroke, what would you like to tell those people?

Dwayne Semple 1:34:40
I think the best thing is to stay positive regardless. And I’m not sure how you do that. I’ve done that, but I found something every damn day to get up for and be thankful for. You know, express your gratitude, find the people that find the people that feel your best. Basket. So you were talking about the fact that you were filling your own basket, trying to fill your own basket, and have filled other people’s basket. So that’s a movement that started, I think it was in the US.

Dwayne Semple 1:35:11
There’s a kids book that was written. It’s called, have you filled a basket today? And I suggest every adult read that. But it’s all about, you know, by you sharing and doing good things for other people, your basket will get filled automatically. Don’t let the basket stealers, the people taking stuff out of your basket, ruin your day. You need to be you need to be positive, and you need to look for those little things, and you have to set some goals for yourself.

Dwayne Semple 1:35:37
I don’t mean things that are unattainable, like, you know, I am going to go win the million dollars in the lottery. You’re not going to do that. But tomorrow, I’m going to walk a little further than I walk today, I’m going to walk a few steps without my cane. I’m going to, you know, I’m going to, so you want to soar just a little bit higher.

Dwayne Semple 1:35:57
You just want to take, you know, step up one more rung, or take one more stare. You know, you need to. You need to do that in order to progress. You know, to feel fulfilled. John Wooden was a UCLA basketball coach, and he was one of the most amazing coaches, and one of the most, one of the one of the coaches that I follow. So one of the one of my, one of my things was I taught leadership. And I love leadership because there’s so many different things, and not every, not every great leader has all the things it takes.

Dwayne Semple 1:36:35
I followed John Wooden because one of the things he would do is take the basketball players out into the forest, and he’d get them to find a tree, and he’d say, Okay, you’re ready to climb a tree, and I want you to go as high as you can. Some people go up, you know, 2 branches, some would go right to the top, as far as they could go. And he’d say, Okay, what I want you to do is, I want you to go one more. Just take one more branch, just go one more, and then you can come right down.

Dwayne Semple 1:36:58
And they all did. And why did he do that? He just wanted them to step out of their comfort zone. So if you step out of your comfort zone, if it’s only one step or one inch every day, that’ll make a huge difference. That’ll make a huge difference. And that’s what’s kept me going, and I you know, I preached this stuff for a long time, and I did it. I tricked myself into doing all the right things. Had, did I have some down times? kind of, but I always tried to stay positive, because I always had something to look forward to, right? I had, as I said, I got eight grandkids now.

Dwayne Semple 1:37:34
I two of them have come along since the stroke, but so I had six at that point, but I had, you know, I had them to look forward to seeing all the time. And all I wanted to do was get out of the hospital and get some hugs and things and and I still feel like I’ve got some, I’ve got some good left in me to try and help. And I want to feel, as I said before, I want to feel productive. So, yep, moving forward, what you need to do is you need to, you know, stay positive and and take that one extra step every day.

Bill Gasiamis 1:38:10
And on that note, thank you so much for joining me on the podcast.

Dwayne Semple 1:38:15
Thanks for having me. It’s pleasure.

Bill Gasiamis 1:38:17
Well, that brings us to the end of another episode, I hope Dwayne’s story of recovery and the exploration of treatments like etanercept through the expertise of Dr. Tobinick provided you with hope and valuable insight. His determination to adapt and thrive despite the challenges of his stroke is truly inspiring. Thank you to everyone who has left a review. It helps others find the show, and it gives much needed encouragement to stroke survivors.

Bill Gasiamis 1:38:47
If you haven’t already, please consider leaving a five star rating and sharing your thoughts on iTunes and Spotify for those watching on YouTube, remember to like, comment and subscribe to stay updated on future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.

Bill Gasiamis 1:39:10
Your support helps us continue to bring these important stories and maintain the podcasts production. Every contribution, no matter the size, goes a long way in allowing me to share stories like Dwayne’s and reach stroke survivors who need the encouragement.

Intro 1:39:27
And if you’re a stroke survivor or know someone with a story to share, I’d love to hear from you. My interviews are unscripted and casual, so just come as you are. Lastly, if you have a product or a service related to stroke recovery, consider sponsoring an episode, visit recoveryafterstroke.com/contact, to get in touch. Thanks for joining me today, and I can’t wait to see you in the next episode.

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