Stroke Recovery After 2 Years: Overcoming Hemorrhagic Stroke, High Blood Pressure, and Sensory Overload
Recovering from a stroke is a long and often challenging journey, especially when it involves a hemorrhagic stroke, high blood pressure, and the complications of sensory overload. Two years post-stroke is a significant milestone where survivors reflect on their progress while continuing to adapt to new challenges. In this post, we will explore the journey of stroke recovery after 2 years, focusing on the key areas of overcoming hemorrhagic stroke, managing high blood pressure, and dealing with sensory overload.
Hemorrhagic Stroke Recovery: A Two-Year Milestone
A hemorrhagic stroke occurs when a blood vessel in the brain ruptures, causing bleeding that damages brain tissue. Unlike ischemic strokes, which are caused by a blockage, hemorrhagic strokes are often more severe and can lead to long-term physical and cognitive challenges.
The first two years post-stroke are critical for recovery, as this is when the brain is most capable of neuroplasticity—its ability to form new connections. While the initial stages focus on regaining basic motor skills, survivors often continue to face issues such as weakness, fatigue, and cognitive problems even two years later. Despite these ongoing challenges, many stroke survivors celebrate the progress they’ve made and look forward to continued recovery.
Managing High Blood Pressure After Stroke
High blood pressure is a leading cause of strokes, and for many survivors, it remains a key factor in preventing future strokes. Managing high blood pressure is crucial to maintaining health and avoiding additional medical issues.
Two years after a stroke, lifestyle changes such as adopting a healthy diet, regular exercise, and medication are essential in keeping blood pressure under control. Survivors must continue monitoring their blood pressure and make it a regular part of their health routine to prevent future strokes.
Sensory Overload: A Persistent Challenge
Many stroke survivors deal with sensory overload, a condition where the brain has difficulty processing and filtering sensory information. After two years, survivors may still struggle with environments that feel chaotic or overwhelming, especially in noisy or bright spaces.
To cope with sensory overload, stroke survivors often learn techniques such as mindfulness and deep breathing. Occupational therapy can also help survivors manage these challenges, making daily life more manageable as they continue their stroke recovery journey.
The Importance of Community Support in Stroke Recovery
Community support plays a critical role in stroke recovery, especially after the two-year mark. Connecting with other survivors, whether in-person or online, can provide emotional support and practical advice. Many stroke survivors find that sharing their experiences with others who understand their journey helps them feel less isolated.
Support groups, both in hospitals and online communities, become essential lifelines for those facing the ongoing challenges of stroke recovery. These groups offer encouragement, tips, and inspiration, allowing survivors to feel empowered in their recovery.
Stroke Recovery and Post-Traumatic Growth
Two years after a stroke, many survivors begin to experience post-traumatic growth—a phenomenon where individuals find personal growth and new meaning after a traumatic event. Survivors may find themselves more resilient, empathetic, and grateful for life’s small victories.
At this point, many stroke survivors also take on new roles, such as becoming advocates for stroke awareness or offering support to others going through the early stages of recovery. Finding purpose and hope is essential to long-term recovery, and the two-year mark is often when survivors start to redefine their lives beyond the stroke.
Conclusion: Thriving After 2 Years of Stroke Recovery
Reaching the two-year milestone in stroke recovery is a significant achievement. While challenges like high blood pressure, sensory overload, and lingering physical or cognitive deficits may persist, the progress made in those two years is remarkable. Survivors continue to adapt, learn new coping strategies, and find ways to live fulfilling lives after a stroke.
Stroke recovery is a long-term process, but with the right support, mindset, and management of health issues, life after a stroke can be rich with growth and meaning. Whether you are a stroke survivor or caregiver, the journey of recovery is one of resilience, hope, and continuous progress.
2 Years Post-Stroke Interview With Steve Lawrence
Join Steve as he shares his inspiring 2-year recovery journey after a hemorrhagic stroke. Learn how he battled high blood pressure and sensory overload, and find hope in his resilience.
Facebook
Instagram
Recovery After Stroke Patreon Page
Highlights:
00:00 Introduction
12:08 Hospital Admission and Initial Diagnosis
16:46 Stroke Caused By High Blood Pressure
33:26 Sensory Overload and Hospital Challenges
40:49 Transition to Rehabilitation
47:46 Challenges with Pain Management
1:10:28 Preparation for Etanercept Treatment
1:15:03 Lifestyle Changes and Support 2 Years Post-Stroke
Transcript:
Introduction – 2 Years Post-Stroke
Bill Gasiamis 0:00
Steve, hello everybody, and welcome to episode 319, of the recovery after stroke podcast. In this episode, I’m honored to share the extraordinary journey of Steve Lawrence, who, alongside his wife Donna, has faced the incredible challenges of stroke recovery after experiencing a hemorrhagic stroke. Steve, a drone pilot, was suddenly struck with paralysis and high blood pressure while on the job, which completely altered his life.
Bill Gasiamis 0:29
Two years into his recovery, Steve and Donna reflect on the trials they faced from managing sensory overload in hospital to navigating rehab during the pandemic. Join us as we delve into their powerful story of resilience, the importance of partnership in recovery, and the insights they’ve gained over the last two years. This is an episode you won’t want to miss.
Bill Gasiamis 0:55
Steve and Donna Lawrence, Welcome to the podcast.
Donna Lawrence 0:59
Thank you.
Steve Lawrence 0:59
Hi Bill, thank you.
Bill Gasiamis 1:01
Thanks for being here, guys. I really appreciate it. Let’s start off with Steve. Tell us a little bit about what happened to you.
Steve Lawrence 1:10
Okay, back on June 29th, 2022 I was at work. I work for a television broadcaster in Canada called CBC, and we were doing a national event, and my role as a videographer, camera person was, I’m also a drone pilot, and I was doing the aerials for the event. Unfortunately, the event was very sad occasion. It was a RCMP, which is our national police force. The member was killed back in 2020. I think, 2020 during a massacre that happened here in Nova Scotia. And they were finally getting around to having her funeral. And so it was nationally broadcast, and my role was to to get the aerials for the broadcast and feed it into the program. It was around noon. It was a warm day.
Steve Lawrence 2:16
It was probably 25 Celsius, Sunny and I was I got up from sitting down. When I was tired sitting in a chair, and then when I got up to to move, to get into position where I could see the drone, I noticed my finger didn’t work on the buttons, but I need to control the drone with and then my hand went, and I thought I was having a heat stroke. So I thought, that’ll go away.
Bill Gasiamis 2:52
Sorry, just a sec. Apologies for what I’m about to say. It was 25 degrees you thought you were having a heat stroke?
Steve Lawrence 3:01
Yeah, 25 degrees Celsius.
Bill Gasiamis 3:05
Well, 25 degrees Celsius, where I come from, is barely t shirt and shorts weather. Do you know it’s, it’s kind of warm, but not really. Do you know what? Right?
Steve Lawrence 3:15
Yeah, we’re in Canada. Today was a warm day. We’re like, upper mid 30s. It was really hot today. This is approaching our into summer starts in June here, and it was one of our first really warm days. So I wasn’t really getting used, like we can get pretty warm here, where we live on the east coast, but this was one of our first real warm days it was 25, 26.
Bill Gasiamis 3:44
It’s 77 Fahrenheit.
Steve Lawrence 3:47
Before I go any further, Donna is used to the heat. She’s from the southern part of the United States, so everything I say in Celsius is Greek to her. She has no translation, Donna. She’s used to need degrees, 100 degrees, with humidity, right?
Bill Gasiamis 4:06
I’m going to check in with Donna as well, right? Because 77 Fahrenheit in Melbourne, Australia, that’s like nothing, right? Is it the same down in the southern United States?
Donna Lawrence 4:19
77 yeah, it’s nice.
Bill Gasiamis 4:21
Yeah, it’s just okay.
Donna Lawrence 4:23
It’s like you could get by with long sleeves.
Bill Gasiamis 4:27
Yeah if you had to.
Donna Lawrence 4:29
If you had to, yeah.
Bill Gasiamis 4:32
It’s interesting.
Steve Lawrence 4:33
So for us going through a cold, long winter, it was our first kind of warm week, and so I thought it was heat stroke or something, and I wasn’t sweating or anything, but everything just started to not work. And it started with my finger, in my hand, in my arm, and then I started to walk about 10 steps, and then down I went, and I remember seeing a few things, because I was very aware of what was happening.
Steve Lawrence 5:07
I was flying a drone, and all I was thinking about was, Oh, my God, the drones in the sky. And is there anybody around now, with the drone, we have buttons that we can push that will bring it back to its location. And I couldn’t activate it with my left hand, because that’s the side that had the paralysis, and I was holding the unit with my right hand.
Steve Lawrence 5:36
So how am I going to, I couldn’t get my hand over to it, so I collapsed. And before I fell down, I remember seeing my surroundings, and there was a man coming towards me, and we were in a big open area, like a football field, and but it was like a silhouette approaching me. And I passed out, and I woke up. I don’t know how long I was out, maybe a couple seconds, and he was cradling me in his like he had me. My head was in his arm, and he said, You’re having a stroke.
Steve Lawrence 6:17
And I said, Oh, I couldn’t speak or anything. And I realized, okay, this is not what I thought it was. And he said his name was Bill. And I remember this clearly. He said, My name is Bill. You’re having a stroke. I work for 911, which is our probably the same as you have there. And I’m not calling them. I’m calling the guy on the hill in the ambulance, because I know who that is.
Steve Lawrence 6:46
So he eliminated the whole system of calling through the dispatch. He just called the guy in the ambulance on the hill, and within a minute, they were outside of the event they were covering and brought me into the ambulance, but I was in and out of consciousness for some of that time, and when I came to I still didn’t realize what was happening. The event was a parade of RCMP officers who were in their uniforms. And I don’t know if you ever saw.
Bill Gasiamis 7:24
CMP, tell me about I think I might have, but just tell me what that stands for.
Steve Lawrence 7:29
Well, they’re, they’re called the Canadian Royal, Royal Canadian Mounted Police, so back in the day, they used to be on horses, yeah. And they wear red uniforms, and they’re very distinguishable, if you see one little that’s what their CMP. Some of them, though, were dressed in military fatigues camouflage, and were carrying their weapons. And these weapons were used for some of this, this story that we were covering, that was the funeral fair.
Steve Lawrence 8:07
This was a situation that involved police action with these military weapons. And when I woke up, I thought I got shot by one of these guys. Oh, that was my first instinct, because they were reaching down to pick me up, and I said, was I shot? And they they were laughing, and they go, no, no. And someone tried to offer me a bottle of water, and Bill swatted it away, and he said, No, no, he’s having a stroke. You can’t give him anything, because he could aspirate worse things could happen. So I was very, very lucky that, that had happened to me, but I still wasn’t processing what was happening to me.
Bill Gasiamis 8:50
When you would dealt with after Bill managed to get the right guys over from the hill, you woke up in hospital. Did you end up in hospital after that? Very quickly.
Steve Lawrence 9:05
I did a couple things before that. I started getting sick. And before that, though they were taking my clothes off, and I said, get my phone. But I had to land the drone. Right? I still had that in my head. I had to land the drone, and I remember taking the controller and pushing the button with my face along like that. And I guess it landed because someone on my crew retrieved it. Part of my crew also was listening to me.
Steve Lawrence 9:35
I had a headset on so I could speak to my spotter, and I was speaking to somebody in the satellite truck, and Emma, who was in the satellite truck, came out, and I handed her my phone, and I said, Call Donna. And I don’t know Donna’s phone number. Donna’s got an American phone number that I always just push one. It’s automatic and but I remembered it. I went 423, and I couldn’t like I don’t know how I knew that having a stroke and all this happening, it just came out of me. She called Donna. Donna was home watching the program, and she knew, and she can tell you that this part.
Intro 10:17
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask? If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 10:47
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.
Donna Lawrence 11:20
Okay, I was watching, they were doing a live on it on Facebook, and I was sitting there, and I was watching it, and I can tell that the drone wasn’t quite angled, right? I’m a photographer too, so I kind of know those angles. So I was like, put it down. Lower it down. You know, you’re not, you’re not doing it right. And I was talking to the phone like he was hearing me, but I thought, something’s not right. That’s not it just didn’t look right. You know, that’s not his shooting.
Steve Lawrence 11:55
And then the phone rang, and it was Emma calling her.
Bill Gasiamis 12:02
How does that phone call go? Donna, how does that phone call go? You answer the phone. It’s Steve’s number.
Hospital Admission and Initial Diagnosis
Donna Lawrence 12:08
Yeah, well, I was already kind of a little flustered that the angle of the camera, and I thought maybe something’s happened to the drone. Maybe it’s having, you know, problems with it, but, she called and she said, there’s been an incident. Steve is okay, but we’re going to put him in an ambulance. He’s going to go to the hospital. And I said, What do you mean he’s okay, but you’re taking him to the hospital? It just didn’t make sense. So then I was like, okay, you know? And then the adrenaline started, and so I started packing a little bag, like a little overnight bag, because I said something may not be right.
Bill Gasiamis 12:54
And then, did you shoot off to meet him at the hospital? Is that the intention of the phone call was it to get you to go there?
Donna Lawrence 13:01
Yeah, at that particular day the car, he had taken the car to work. So I didn’t have a car, and it was probably about 20 minutes into the city. So they had made some phone calls. Emma did. Had made some phone calls back to the station, which the station got the anchor to come to the house to pick me up, because he knew where we lived, and he drove me over to the hospital, and we had gotten there probably about 10 minutes after they had arrived with Steve.
Bill Gasiamis 13:33
What kind of person are you when there’s an emergency? I know there’s certain people I wouldn’t call in an emergency. It’s like, all right, call that person. Don’t call that person. Call that person, avoid that person. Are you cool, calm and collected when it comes to that kind of stuff, or are you do you take things difficult? Is it hard for you to sort of over, overthink about what’s happening?
Donna Lawrence 13:57
No. I was just okay. I gotta get the bag. I gotta get a purse. I gotta do something with the dog. It was just like I knew that things had to be done and not to jump to conclusions, because I didn’t know what was happening. So that was pretty looking back on it now I took it very calmly. You know.
Bill Gasiamis 14:19
You’re on my call list then.
Steve Lawrence 14:22
Yeah, because of that, it saved me. Because when I got in the hospital, I still had no idea what was happening to me, until I got through the main doors and there was a neurologist there, and he was doing this. How many fingers do I have? And can you see me over here? Can you see over here?
Steve Lawrence 14:39
And somewhere in the mix, Donna was standing off to the side, and I saw her, and she was not freaking out, and they had told her that he had a stroke. We didn’t, I don’t know at the time, did we know it was hemorrhagic? We did. So they were kind of narrowing it down to where it was, what kind of stroke it was. But when I saw Donna I just I went, Oh, I’ll be fine. I’ll be okay. She was fine as kind.
Bill Gasiamis 15:06
So she’s calm, you’re calm, and then that that’s a good kind of patient to be it’s good to be calm, because then the doctors can deal with the situation, not with somebody who’s freaking out as well as the situation.
Steve Lawrence 15:19
Right? And I didn’t really worry, because I never had any health problems in the past, other than self inflicted pain from breaking bones and wiping out. And I don’t have any. I didn’t know.
Bill Gasiamis 15:34
Was there any now reflecting back, was there any signs that you think, oh, maybe that was the issue giving me some warning signs. Was there anything like that?
Steve Lawrence 15:47
Yeah, there was times when we were doing things that I would get really sharp pains in my head, and I would mention it to Donna, I say Oh, that was weird. It was just like someone took a hammer to a metal plate. Ding, you know, zingers. And it was always on that side. It was on this side my head, yeah, the stroke happened. It was inter cerebral hemorrhage happened on the right, but everything on my left pretty much went paralyzed.
Steve Lawrence 16:17
And so if I was to look back and see if there were any signs that might have been something that was saying, hey, but it was all during this pandemic, and we didn’t have doctors to go to. It was just phone calls. I never was hooked up to a blood pressure machine in years. I didn’t have someone checking me other than a phone call. And I was, well, try taking the Tylenol a stuff like that.
Stroke Caused By High Blood Pressure
Bill Gasiamis 16:47
Yeah. So what was the underlying cause? Steve, what did they discover caused the bleed?
Steve Lawrence 16:53
It was high blood pressure. In my case, it was extremely high. It was I broke down because of 212 over 105 so all I knew before strokes at 120 is the number you’re supposed to be in and around. If you get too low, then you could faint. If you get a little higher than that, you might whatever, but 212 sounds like a really, really high number. And in my case, it was. How long has it been going that way? Could have been years. I don’t know. I never knew, but high blood pressure does run in my family. This came out afterwards that I found out that my mom and my brothers have it, but it wasn’t something that they didn’t have a stroke, it was just take pills and manage it.
Bill Gasiamis 17:43
It’s often made worse by smoking or drinking. Were you a smoker or a drinker or anything like that? Overweight?
Steve Lawrence 17:50
I’d have the odd beer, like once a week with my buddies, but it would that would be at just one or two. No smoking, never.
Bill Gasiamis 17:59
I know how I had the bleed. How old were you when that happened?
Steve Lawrence 18:05
I was 56 and that was when it happened.
Bill Gasiamis 18:10
And as far as you knew, and everybody else knew looking at you, everything looked and seemed okay, and you didn’t have any concerns about your health prior to that say and and have regular contact with doctors or GPS or anybody,
Steve Lawrence 18:27
Nope and even when I did go to the doctor before the pandemic, things kind of changed. The hands on stuff wasn’t the same. It was kind of, you go in, you spend 10 minutes in the office, and then next, I had did some injuries to myself from work with my back and my shoulder. I had broken that and then that was just referred off to a specialist, so, but as far as.
Bill Gasiamis 19:03
Blood pressure or any of that stuff.
Steve Lawrence 19:05
No, no, nothing like that. So when I heard that I had a stroke, it was like now my grandmother, she was 100 she almost made it to 102. and she was having TIAs, but she’d go to the hospital and be back home for supper, and I thought, okay, that’s what’s going to happen to me. And then one of the funny things that comes out of this is the doctor, neurologist asked me as he was leaving, he said, Is there anything you want to know? Do you have any questions? And I said, Yeah, Donna and I are planning to go down to Tennessee in August or September, so a couple more months, will I be able to drive down there? And he just looked at me and said. You, young man, are not going to be driving from many calendars.
Steve Lawrence 20:05
That, if that didn’t give me a stroke, then it was, it was like, what does that even mean? They’re not going to be driving from many calendars. So I went back and then tried to process that, like, Is this really going to be that bad? And it wasn’t really until later. I think that week I was or maybe that day, I was laying in bed in the emergency and it must have been that day, and I kicked my left leg. And I didn’t know it was me kicking my left leg. I couldn’t feel it. And I said, who’s in bed with me? This that sounds funny.
Donna Lawrence 20:46
Because your right leg knew that you hit something, but your left leg wasn’t talking back.
Steve Lawrence 20:50
But I was looking around saying, who’s in bed with me. Now, I didn’t lose any perception of vision or speaking. It was mostly just physical, very like limp, no feeling at all. So when I kicked it, didn’t know it was my leg I was kicking it.
Bill Gasiamis 21:09
I can relate to that. I’ve still have that issue 12 years later. It’s not, it’s not like I completely don’t know. It’s like there’s not enough information coming back to my brain to say your leg is in the wrong position. So often, if we go out to dinner, and you know, you sit on those tables with lots of people, and sometimes there’s a table leg in the middle of where you are, because you’re at the table leg part of the seat.
Bill Gasiamis 21:41
And then I’ll go to shift over to the left to get out of the table or to the right, and my leg will be stuck where the leg, my leg will be stuck at the table leg, and I’ll be trying to move, and I won’t know that my leg is there, and I won’t be I won’t be able to take to slide, and I’m just trying to work out. Oh, why am I not sliding? Ah, okay, I look down and my leg is stuck behind the table leg. So it still happens, and it’s very weird. It’s still something I haven’t completely gotten used to. I still go into automatic mode when I think about trying to get up from the table and walk away.
Bill Gasiamis 22:22
Donna, what’s it like when you go to the hospital and you receive the news that your husband has had a stroke? Like, what’s it like to be a spouse and receive that information? And when I say spouse, what I mean is like to see the person that you love on the other side of the bed in that state, what was that experience like?
Donna Lawrence 22:47
It was so funny, because I guess the adrenaline at that point had went away and strength came, and I knew that I had to be the pillow of, and I say the pillow because he had to lean on me. I mean, I had to be that person for him that was going to keep him happy, keep him smiling, keep him lifted, not worry about anything, take one day at a time.
Bill Gasiamis 23:15
The role, I think, that the caregivers play, is really important, like Steph said earlier, a it’s important to become it’s important to be able to step up and say, you know, I’ve we’ve got this. You can lean on me. I’m going to be able to help you through this, even if it’s not true, even if you don’t know that you can do it.
Bill Gasiamis 23:37
It’s important to be able to at least say it in that time. And then if you can pull it off, that’s great. If you can’t pull it off, then it’s important to get the resources around you guys to support each other, so that you both have support in that situation. And as far as you had known, had you ever dealt with anybody? Had had a stroke before, or known anybody, or met anybody?
Donna Lawrence 24:00
Yeah, probably, I don’t know, maybe 25 years ago, my dad had two strokes, two ischemic strokes, his affected his speech, but with rehab, within a few months, he was okay. So his was not severe, but it was, you know, it was severe at the time, but it he got through it. So that was the only person that I knew of that had had strokes. And I had never really heard of anybody having a hemorrhagic stroke. I mean, like, Tell me more. What does this mean, you know, and it was the big brain bleed in the center of the brain that they couldn’t do anything. They just kind of just let it go, yeah, let it heal itself, right?
Bill Gasiamis 24:51
Okay, so obviously, they medicated Steve. They’ve given you the blood pressure medication. They’ve realized that it was high. They would have brought your blood pressure down. At some point and stabilized it, and then they just let it heal and monitored it. Steve.
Steve Lawrence 25:05
Yeah, there was no snow going in and stopping it, which was kind of scary when you I thought about it, they didn’t. I remember say, if we go in, it’ll do worse damage by cutting your head open and going in and trying to clamp it off or whatever.
Steve Lawrence 25:21
There was no drug that they could give us, whatever that drug got a shot that would these, that’s for clots, they said, nothing that they could do, so we’re going to let it bleed out. And so I remember there was a number that I heard later that I had a 30% chance of making it 33 or 30% something like that. So I it didn’t hit me. I didn’t go, oh my god, this is my last moments. I didn’t, didn’t clue in. But looking back on it, I’m like, wow, like I was close to the end, and I didn’t know it.
Donna Lawrence 26:07
It too is. It’s kind of like the old saying you gotta be in the right place the right time, if he had been on a shoot, say, three hours from here, which that’s a common occurrence, maybe on the coast, and and two to three hours away from a hospital, yeah, much less than ambulance. I mean, the outcome would have been a lot worse.
Steve Lawrence 26:36
Yeah, the job I had, I was never in the city, usually I’m in the sky, I’m on the water, I’m in the woods and far away from my base, traveling.
Bill Gasiamis 26:50
This clearly, is not around paramedics who are on standby just over the hill.
Steve Lawrence 26:55
No, and to be scooped up by the guy who knows 911, and it’s all like intervention stepped in, and I never really looked at it like that until afterwards, like the blessings in life that kept us alive, kept kept me alive, and having Donna in my life, Donna was Not working. She moved up from the United States. Her family’s still down there, and she moved here for me, and she was a homemaker, and we were able to live on my income, and I would come home every day, and everything was perfect. Now I’m in the hospital, and she was able to come in every day before I woke up. She was there when I went to sleep. She was there every day.
Bill Gasiamis 27:50
Yeah, that’s very useful, isn’t it? It’s very helpful when somebody, when you wake up and things are weird and scary and you don’t know what’s happening, and then there’s a calming voice in the room with you, just checking in, making sure that everything is okay. How, how did you play that role? Donna, what did you feel like your role was?
Donna Lawrence 28:11
Oh, my role is just to be like, I’ve always been to him, but kind of amped up the little volume a little bit, because I had to do everything. I mean, I was for weeks. I had to feed him. He couldn’t, he couldn’t function, you know, so it’s, I took the role of a lot, a lot, and the nurses saw me come in, and there it was almost like a calming effect to him. They’re like, oh god, dude, she’s here. She’s like, there’s one patient that I don’t have to do everything for because she’s here.
Bill Gasiamis 28:46
Right? Okay, so he couldn’t eat. He couldn’t eat at that stage. Couldn’t get up, couldn’t move any of the left side.
Donna Lawrence 28:55
They had to hoist him. They’ve got one of these things. And I wish I knew the crane part. They they would, they would scoop this little thing under him, and they would hoist him up and bring him over and dropped him in, not drop, but placed him in a wheelchair, and then I took the role of pushing it. You know, we would go on walks and things. We didn’t get to stay out very long because it then was hot, and then he just was very fatigued, very fatigued.
Steve Lawrence 29:29
And I wasn’t walking. I was in the chair, yeah, but I was a bit bigger than I am now. I’m down to what I should have been, I guess, in weight. But I was 222 pounds, 511 and a bit. So now I’m down to 180 I just checked before I came in, and that’s where I was most my life. But I think as when I turned 50, I started putting on a little more weight and wasn’t paying attention.
Steve Lawrence 30:03
Diet was a big thing. Eating on the road, a lot of work, you don’t sitting, you’re not coming home, you’re traveling, you’re just going to eat where you can eat at your desk, inhaling whatever you can get. So and a lot of things work was, my work was very stressful, but I didn’t really pay attention to it being stressful.
Bill Gasiamis 30:28
Just a quick break, and we’ll be right back with Steve’s remarkable journey. But before we 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 collection of stories. It’s a guide on how to achieve post traumatic growth after stroke. The concept of post traumatic growth, or PTG, was first coined by Dr Richard Tedeschi and Dr Lawrence Calhoun in the in 1995 and my book builds on the groundbreaking work.
Bill Gasiamis 31:00
In it, I share my own recovery journey and those of others who turn their challenges into powerful opportunities for growth. If you’re looking for practical science backed steps to move forward after stroke, this book is for you. You can grab your copy on Amazon by typing my name, Bill Gasiamis, into the search bar or head over to recoveryafterstroke.com/book.
Bill Gasiamis 31:26
So it’s high intensity, right? Because it’s about getting the right shot, the right time, being at the right place, all that stuff. It’s all about getting it back to the station as quickly as possible. It’s forever changing, especially in a scene like that, where there’s people everywhere and a parade to focus on, it’s just constant, and it’s not about you, really, it’s about footage. So everyone puts a lot of effort in. I interviewed a reporter a few years ago, Mike Smith, and he was telling me that his hours were just ridiculous. As a reporter, he was working all hours in every hour of the day, and he had no life other than work because it was so consuming, so over the top consuming.
Steve Lawrence 32:19
That’s what was happening to me, and I didn’t realize it until after I had my stroke, and look back and say, but I was working eight to 10 hours a day at work, and then I was coming home. Donna’s been sitting here patiently all day waiting for me. She’s got supper ready. She’s taking care of the house and taking care of all of our affairs. And she just wants to have a conversation, how was your day? And I take out the laptop and I continue working.
Steve Lawrence 32:50
I mean, taking in stuff I wasn’t able to finish at work, yeah, and doing it at home, so making sure everybody at work has got all the stuff they need. And I never stopped, I never turned it off. And there are a lot of people at work that are still like that, and it was a wake up call. A few of my friends that have are in similar situations with workflow, and they went, Whoa, it’s bundle Facebook, and they drink and they live different lives. Work was a big thing.
Sensory Overload and Hospital Challenges
Bill Gasiamis 33:26
Yeah, so when you woke up with all of the deficits, you can’t eat, you can’t walk, what was the rest of the process like? Did you do rehab? How long was that for? And where was that?
Steve Lawrence 33:41
Okay, so the hospital I was in was in the city, and for Donna, every day she would come in, and she had to learn how to drive my car, because my car was a annual standard. We call them six speed. And she did that. She did pretty good. My hospital stay was five weeks, I think, but it was hell on earth, to be blunt. I like I thought it was going to die there because of the noise, all the confusion going on, and there was a man that died next to me the night after I got in, he had passed away from a stroke, and was still there the next morning when Donna walked in and all the commotion of everything going on, the beeps, the buzzers, the noises, the smells, I didn’t think I was going to make it.
Bill Gasiamis 34:37
And wow. So it was that intense, the sensory overload was that intensive? You felt really unwell about it. That’s so interesting, because obviously lots of stroke survivors, brain injury survivors comment about the sensory overload from light, sound and all that kind of stuff. And you’re in a hospital where you’re meant to be cared for and looked after. Nobody’s considering a. That side of it for you at all are they? They’re just not tuned into how much harder it is to experience all that sensor sensation with an injured brain.
Steve Lawrence 35:13
No, they would come in in the morning, and it was a routine, but they turned the lights on and the buzzers all night long, people are moaning and groaning, and some were in different for different reasons, and but I found out that I was going to go to rehab, which was another building down about five minutes away from the hospital, and it was just like waiting for to get that call. Let’s say we got a bed, and once that day happened, it was like I won the law.
Bill Gasiamis 35:48
They were out of there.
Steve Lawrence 35:51
I was out of there. It wasn’t that easy, but I’ll get to that instead.
Donna Lawrence 35:55
They, he typically when, or typically when they have a stroke at this particular hospital, they’ll bring them from the ER straight up to a certain floor that’s called the stroke floor, because that is the unit that they particularly are just fully involved in strokes. So there’s, there was a lot of patients, and at that time, even that was kind of mid covid, I would say there was a lot of covid patients in there that also had had a stroke, and it was just, it was kind of scary, because you seen all these signs saying, covid Dress up, you know.
Donna Lawrence 36:38
You had to put on all The little mask and the, what do they call it? The gams and things that that doctors had to put on to go into the room. So that was scary, because I thought I’m going to come out of here with covid, and then I won’t be able to see him.
Bill Gasiamis 36:56
Yes, she goes out to all the covid era patients of any illness, because I heard so many of those stories where people had their stroke, condition, situation made even worse by all of the challenges that were related to that. I can’t imagine what that would have been like. We went through a lot of tough times for over three brain brain hemorrhages, brain surgery. My mother in law passed away at the a week or two before my brain surgery, so we had to have the funeral, and then brain surgery and throwing a pandemic into the mix, I can’t imagine like how much harder that would have made the whole situation which was already terribly hard.
Donna Lawrence 37:44
Right? I mean, a stroke is a new thing, you know, especially if you’ve never had one, or had any, any person around you that had one. So going through that and learning how to cope with that, and then, plus the pandemic that that was totally what do you do? You know, it was just a lot of scary things, a lot of scary things.
Steve Lawrence 38:04
And Donna was the only person I had a connection with, but the doctors and stuff were just so overwhelming. But without Donna there, every day.
Donna Lawrence 38:13
I had to be the advocate.
Steve Lawrence 38:15
Yeah, she really did have to do things for me.
Bill Gasiamis 38:18
Yes, the advocate is important role under normal circumstances, but when the doctors and the nurses are run off their feet, even more so than they normally are, because of the stuff they got to deal with with the pandemic, then Steve’s easy, forgotten, like.
Donna Lawrence 38:37
And you have to and it would still be if something happened today in the pandemic was not going on. I mean, it’s still a little bit, but you gotta be on top of what the doctors or the nurses are telling you. You got to either take notes or try to remember it. Because I caught two or three nurse practitioners and nurses that told us one thing, and then the next day told us another. And I’m like, No, you told me that the numbers are. You told me this medicine was for the you know? And so it was like, I wasn’t trying to correct them, but correct me if I’m wrong, what I need to believe. You know?
Bill Gasiamis 39:19
Yeah, it’s really important, Steve, you finally get out of the hospital ward, and then you’re going into rehab. Tell me about the rehab experience. What was it like to really first, for the first time in a long time, like not be able to use any of your left side?
Steve Lawrence 39:39
Yeah, So it was during the hospital stay that I realized that I can’t stand up by myself, that I had to get the crane pick me out of bed, put me down, and then they tried to do some rehab in the hospital, when I went out in the hallway to walk. Collapsed, but they caught me. I was it, but what I found out, I did was, what’s that nerve, the vagus nerve? Is that something you ever heard of?
Bill Gasiamis 40:09
Yeah, the wandering nerve. It’s the nerve that connects all your organs. Every single part of your body is connected to the vagus nerve.
Steve Lawrence 40:17
Well, I triggered that, and boom, down I went. They were there to hold me, but it was, it’s, I had that happen to me a couple times, and I thought, Oh, my God, if every time I stand up, this is going to happen, it can’t go on.
Bill Gasiamis 40:30
And what happened? What did you feel?
Steve Lawrence 40:32
You just all, you just lose all control. Everybody switches off your bodily functions, your muscle tone.
Donna Lawrence 40:41
It’s like you faint, yeah.
Steve Lawrence 40:42
It’s like a faint, yeah.
Bill Gasiamis 40:45
Right, okay, switches off, yeah.
Transition to Rehabilitation Before 2 Years Post-Stroke
Steve Lawrence 40:49
So I get the word that I’m going to the rehab yay. It packed me up, and that took about a day to get everything coordinated. And we go over there and the rehab building, I’ve been in it before for doing stories that I have done in the past about people who’ve had injuries that needed rehab. And I knew it was a really good place, but where I was going to be in a room it was institutional, like I felt like I was coming from one bad place and going into another. And I got in a room with four guys, and there’s, there was no quiet.
Steve Lawrence 41:31
I was thinking this is where I gonna get some rest and this is what I need for my head, and the guy next to me from middle east, I was think he was from Afghanistan and the guy on the another side is local and the guy next to me was dying of something but I dont know if he survived, he was moaning and groaning and I don’t know if he had a stroke if he had something up, but there’s a guy next to me on the side who was calling his family in the middle east, at 3 o’clock in the morning which supposed to be I’m dead asleep, and he was yelling and because I thought he had it as scream, that made them hear the connection out of work.
Bill Gasiamis 41:34
That’s just, just so, you know. But when my family talk to people overseas, they do talk a bit louder. It’s just to make their voice travel somewhere quick or something. I made like it’s to hit the satellite better. I don’t know why, but the voice goes up. And also, if you’re from one of those kind of backgrounds, you’re born with a voice that’s louder, just by default, you’re about, you know, 20% louder than the normal person, right? And you, and often, Steve, you piss people off, right? So I do that like I have a normal conversation with my wife then she says, why are you yelling, dude, we’re just talking. I haven’t yelled yet. And that’s, that’s all he was doing. He was just being normal, yeah.
Steve Lawrence 43:06
I realized that.
Bill Gasiamis 43:07
But at three in the morning, it’s tough.
Steve Lawrence 43:10
Yeah my brain was having a hard time with all the different noises and sensations, and he couldn’t speak english very well and so when he wasn’t talking to them he was on his iPad or tablet, listening to children’s programing like Dora The Explorer. It was a riot when you think about it, but he was learning how to speak english through these children’s programs.
Steve Lawrence 43:36
And so I hear in the morning, Teletubies, or whatever it was or Dora he was repeating it so I’m like oh good God help me, take me out of here. And my work plant that I have pays for a semi-private room so Donna was right on that and she’s like why is he in here with four people, you’re lucky you got a bed. True we were lucky we got a bed and they get me down to the gym that they have there and I meet the lady that would teach me how to walk again, and she’s been at it for some years, she’s about 5 foot zero and I thought there’s no way she can hold me up, there’s no way.
Steve Lawrence 44:17
And they did a video it was incredible like to see me in my first steps again with her right behind me every bit of the way but the rehab I started to make gains and I with physical stuff. And my left leg, I can’t move arm quiet a long time.
Bill Gasiamis 44:22
Your left leg is what situation now?
Steve Lawrence 45:07
My arm, oh, I can walk, it’s but I worked really hard to get my mobility back, and I thought I was doing it too fast, because I was getting a lot of pain. And I was saying to them, is this what I never had stroke before? So I don’t know. Is this is normal to have this pain? And they’re like, then they start poking me with different things and thinking, it’ll go away.
Steve Lawrence 45:38
We’ll give you some pills. And so they loaded me up with, I had to write it down, amitriptyline, Gabby penaltra, simple Cymbalta, and that was the worst one that this made me a zombie. It was bad, and the pain didn’t go away. Wiped you out. Yeah, pain didn’t go away at all. But I still had the pain and taking all this medicine, and I’m just, I wake up after sleeping and I want to go back to bed again. Fatigue was huge, but the rehab I ended up getting, I don’t know if Donna was behind this, but she kept saying, like, he gets a private or gets a semi private room.
Donna Lawrence 46:26
Have to talk to a Head guy.
Steve Lawrence 46:28
The head dude. And one day a nurse came in, and she just started grabbing all my stuff out of the room. And I thought, Oh, we pissed somebody off, like, I’m going back to the hospital. And they, they literally wheeled me out of the room in my bed, like I’m still laying in bed waking up, like, what’s going on? And she puts me into this, I thought was a closet, and it was my own bed, my own room, my and she said, No, you’re going to have this now and I didn’t care how big it was, but I could close the door, and I could shut everything else. And so the last five weeks of rehab, I had a private room that’s and it was good, because Donna could come into the room where, when at the hospital, she could come in, but at rehab she couldn’t, because it was shared.
Bill Gasiamis 47:19
Yeah, too many people. That’s so good. I remember also having all of those troubles in the hospital ward and then going into rehab and having my own room in rehab. It was such a relief. It’s where I actually rested. It took, you know, a good two or three weeks to actually rest, and I was in rehab for four weeks, so even though they were fatiguing me when I was trying to learn how to walk again and all that stuff.
Challenges with Pain Management: 2 Years Post-Stroke
Bill Gasiamis 47:46
At least I could go into my room and there was no buzzers and there was no people whinging and moaning and talking to Afghanistan at three in the morning. It was just me, and it was so good to have that space. It’s where I think why most of my recovery was possible? Definitely. Why? Tell me about the Michael Jackson glove that you’re wearing?
Steve Lawrence 48:11
Yeah, really. Well, this is back to the pain. They still haven’t gotten to the bottom of it, and it wasn’t until about a couple months ago, they thought, because most of the pain I have is in my butt, right in my butt, kind of deep in the cheek, and then down behind my leg, in my calf, and then right into my foot. And they thought it’s your sciatic nerve. And then why is this hurt shoulder, my shoulder and my arm. And it wasn’t until I went to an orthopedic surgeon who was a second opinion, they were going to cut me open and do a dissectomy in my spine.
Steve Lawrence 48:55
Because I do have, Well, where your vertebraes are in between you have bulging discs. They take the take the vertebrae and take it out and put an artificial one in, and then hopefully takes the pressure off of the nerve that the bulging part of the nerve. Yeah, I do have that based on an MRI. It’s very slight, but one doctor said it could be really slight, and it’s like a hangnail on your hand that it feels like your fingers amputated if you it gets too bad, but it could be really bad, and you don’t notice it, so I’m going to get you a second opinion.
Steve Lawrence 49:43
And the second opinion orthopedic guy said, You know what? He said, have you talked to your neurologist about this? And I said, neurologist, I haven’t seen a neurologist since the moment I walked in the hospital. He said, What? And I said, No. He said. Wrote a referral right away. He said, I’m going to get you to see her. You need to see a neurologist. He said, what the pain you have is nothing to do with this. It’s see central post stroke, stroke pain.
Steve Lawrence 50:14
That’s what he thought of. And so that’s when I started looking into that more, and that’s how I come across your videos, and other people, I’m like, What is this thing called central post stroke pain? I saw that 60 minutes in Australia, did a feature on a woman. And so then I really started digging deeper. And I’ve I’ve found you, I’ve found other people. I’ve talked to people that have had the treatment in Florida for different things.
Bill Gasiamis 50:46
We’ll talk about a tennercept in a second. Post stroke, pain is so common. I’ve met people on the podcast who have opted to have a foot amputated to get rid of the pain. It’s that, that’s what I it’s dramatic. Sarah Curley, that interview was stunning, because I just couldn’t believe who I was going to interview and why I was going to interview her. And then, if you watched that interview, or if you heard Sarah talk about it.
Bill Gasiamis 51:23
There has been no better decision that she has made in her life than to remove her foot, and the pain went away, and she’s just, uh, massive advocate for it. And I was like, I can’t I can’t wrap my head around it still, but I also have never been in the amount of pain that Sarah must have been in. Now I get left-side pain, and my foot is always kind of stiff and tight. The ball of the foot kind of always aches. My left hand aches. But I’ve never had to take painkillers. I can almost ignore it if I focus on something else, it kind of, it’s not in my mind.
Bill Gasiamis 52:05
And then I’ve had people reach out to me because they heard Sarah’s interview and said, Can you put me in touch with Sarah? Because I think I need to go after that particular solution as well. So I end up, I don’t know what it’s like, but I can appreciate that people after stroke do experience pain. A friend of mine has a daughter who experienced a stroke when she was 17, Brain Hemorrhage as well, and everything was going well, and her recovery was doing great. And then at around about the seven or eight month mark, she started to feel pain.
Bill Gasiamis 52:45
And what they were saying was, as the brain started to heal and started to come back online, things were settling down, but one of the things that was triggered for her to feel as other things started to settle down was the pain that was there, and it’s kind of and it’s not. It’s not. This is the hard part about it. It’s actually not real, because it’s not the pain is not saying, warning you have done something to injure yourself.
Bill Gasiamis 53:18
Do something about it. It’s just like a an incorrectly wired part of the brain now that’s triggering the pain mechanism for no reason that’s urgent that you need to take care of. It’s just accidentally kind of switched on, and now it’s a case of, how do they switch it off? So I can appreciate it, and I’m really surprised. Well, I’m not during covid. I’m not surprised that you didn’t end up seeing a neurologist during that era, but it’s often I speak to stroke survivors who have not seen Well, I didn’t see many people even during my visits to the hospital over the three years that I was going through it, because my incidents were on again, off again.
Bill Gasiamis 54:09
There wasn’t, there was too many people involved in my in my acute presentation. So when I was there experiencing the bleed, I would get treated, etc, and then they’ll be like, Okay, we’re going to monitor you, catch you later, see you later.
But they never said, What are your deficits, or what are your cognitive issues, or any of that stuff. They just treated the bleed and then sent me home. So we had to do the same thing. We had to find out, who else do we need to speak to? Like, what else can I do to make this better? Who asked? I have to follow up with we were just it was just missed. It was just one of those things, you know. And it wasn’t even during a crazy pandemic period.
Bill Gasiamis 54:54
It was, I would say, in one of the best times to be unwell in. Hospital in Melbourne, things were great but, but it’s good that you guys have worked it out, and you’ve continued to advocate and get second opinions and keep asking questions and being curious, searching for more information online. That’s the reason why the podcast exists, because I was lacking a lot of the information that stroke survivors still lack. So it was like, what, how do how do I do that is, I put it out there caregivers.
Bill Gasiamis 55:27
It’s important for caregivers as well, so that they can navigate how to support their loved one and how to advocate on their behalf in the hospital when their loved one can’t advocate. Yes, so the way I came across a tannercept was in the very early years of my recovery, and immediately it’s it triggered that hope, that spark for hope. Ah, okay, so I haven’t been there yet, and I really would love to go and see Dr tobinick.
Bill Gasiamis 56:09
And first what I had to get out of my head was whether or not it was legitimate or not, because there was a lot of terrible talk about what he does over there, even after the 60 Minutes interview that was done now, I’m pretty sure it was done around nine years ago here in Australia about his particular treatment. And I, I am not in a position to raise the money to travel from Australia to Florida to get the injections, to come back to all of that. I’m not in that position yet, and I am not in the kind of pain where I have to 100% try and get it sorted.
Bill Gasiamis 56:55
Because, like I said, sometimes I can not notice how my left side feels if I’m distracted enough by the tasks that I’m doing, whatever. So when you found the interview, how did you react? What did you think about that when you see something like that, when you’re experiencing the kind of challenges that you are?
Steve Lawrence 57:17
Well, the part journalist in me needed to know more, and I did the research. And first person I would talk to about was Donna. I said, Let’s watch this. Look at this, this might be what I need.
Donna Lawrence 57:32
It’s about what three months, four months ago.
Steve Lawrence 57:34
Could have been. Yeah, Donna didn’t really she’s she’s more familiar with how things go on in the United States with the healthcare system, and she had a lot more skeptical moments about it. She’s but it wasn’t until the last couple months, I’ve actually been in contact with people who’ve had the treatment, the lady that had aphasia. She was on the 60 minute story. I tracked her down, and she called me. She called me, and we had a talk with her about two a month ago for a good hour. And she said, not the same thing.
Steve Lawrence 58:18
She said, I was skeptical. I thought that was the way my life was going to be, but they had the means to be able to travel down and try it and, well, you see the result. It worked in the video. Then you go online and read a little more, and there’s a lot of skeptical, like, oh, that’s just witchcraft, or those people are actors or, and I’m like, No, this is real. I know the pain. And when they were getting down to like, the details of like my teeth hurt on my left side, like when I chew, how would they know that in your taste, the taste, the detail of my fingernails feel like they’ve been all chopped off like that, that detail of pain. How can someone else know that.
Steve Lawrence 59:00
And they’ve had this treatment. And one of the guys that just came back last week from there, he, I think he was commenting on in your group, on your podcast and on YouTube, and he said, I’m going down in July. And I replied, Let us know how it goes, because at that point I was really looking into it. And the end of July happened last week, and I sent him a note underneath his comment, I’m going down in July, and he said, I’m just on my way back. I have lots to say about it. And I went, Oh, right on, this is what I want to I want to hear this. Found out the guy lives an hour away from me, and we talked on the phone.
Steve Lawrence 59:51
Yeah, the other day, this guy is done his homework. He’s a. High Level paramedic who’s researched everything. He’d studied, all the journals, all the medical stuff, had the discussions with his family and people, and said, we’ve got the means. Let’s, let’s make it, see if it works. And he’s, he’s noticed a difference, and like we all have different deficits.
Steve Lawrence 1:00:22
Mine, people look at me and go, wow, you had hemorrhagic stroke and you’re walking and you’re moving. And I’m like, but I wasn’t two years ago. But I have a lot of residual issues, the pain. You can’t explain that to somebody no like Donna sees it in me. She sees the fatigue, but I still cannot. And so you asked about the glove earlier. This is maybe it’s in my head, but it’s a compression glove, and it’s, it’s helping with the nerves.
Bill Gasiamis 1:00:56
It’s not in your head. No, it’s legitimate.
Steve Lawrence 1:00:59
It really is, and sometimes I wear the sleeves that goes right up here, and it helps. And I have one for my leg. It knocks it down a bit. So back to the intercept. Katanas up. I’ve talked to these people. I talked to Linda, I talked to the 60 minutes producer. I’ve talked to other people who been there. Met the doctor. I talked to the doctor. We had a conversation with him for an hour a couple weeks ago. I’m scheduled now to go down in September. I have one more thing to do, a test to make sure that I’m they have to do a TB test tuberculosis.
Steve Lawrence 1:01:36
I have that on Monday or Tuesday, and if I if I’m good with that, then we’re going to make a trip down. My goal is to take what pain I have I can function like on about a six or seven pain. Some days I’m at an eight, especially with the weather, I’ve noticed, yeah, we have different climate here in the weather.
Bill Gasiamis 1:02:04
Okay, so the cold. How does the cold effect? Because I hate the cold. We get quite cold here in in Melbourne. So the last few weeks, wake up in the morning, it’s one degree Celsius or two or three, and through the day, I might get to 13 or 12 or whatever, and I feel way more pain and way more kind of irritation on my left side than I would in summer. I love summer. It could be 37 degrees, and I’m loving it, you know, there’s no problem. So how is that dealing with the temperature fluctuation for you? Because you guys get really cold up there. We do. Yeah.
Steve Lawrence 1:02:41
We get really cold in the winter, minus 20 to Celsius. That’s not as bad as when it’s around zero, it’s more there’s more moisture in the air, then when it’s really, really cold, it’s dry, the humidity is not high, but when it’s around zero, there’s a lot we’re right on the ocean. So there’s more humidity with the fog and the dampness that I can feel the weather before it hits the weather comes, or if it’s raining, yeah. So the other day, it was raining, and it was, it was quite sore. So if, I can get pain knocked down from an eight to a five or a four, I can probably live fine with that like you are.
Bill Gasiamis 1:03:24
That’s a win.
Steve Lawrence 1:03:25
You know you’re you’re managing, and so we have the resources. We’ve got a family in the States, we can go down and make a vacation out of it and see her, her family. And things just came together in the last last year, my mom passed away during all of this. And I know my mom would want me to have this done, because every day I saw her, she was always like, Steve, how’s your pain today, dear? And I’m like, you know, it’s alright, mom.
Steve Lawrence 1:03:55
She got it. She ended up dying of brain cancer suddenly, like it was, within months she was diagnosed and and she died very peacefully. She didn’t suffer. She was able to talk to us and live comfortable life right up to the very end. And she knew and she would want me to do this.
Bill Gasiamis 1:04:19
I feel like everybody says, what I’d like to encourage everybody to do is, I know that’s not within everyone’s means to go and get $19,000 worth of etanocept shots, you know, at Doctor Tobik. So I get that. And that being said, like, I still think everybody should go after every single bit of recovery they can get from wherever they can get it and do anything they have to do to get it.
Bill Gasiamis 1:04:44
That’s why I like talking about a tennis set, because the podcast, previously to this, shares stories. It’s amazing, like it does give a lot of hope and support to people who have had a stroke and are learning about their condition and how people deal with it and how they might overcome it. Uh, but the really, the real thing I want to do is I want to be able to say, here’s a potential solution for you. Or some people go and check that out, and that’s what that interview that I did with Andrew, or I spoke to him too.
Bill Gasiamis 1:05:16
Yeah, Andrew’s awesome that I that I did, like episode, oh, man, I forget what it was now, but it’s easy to find. If anyone wants to know what it is, they can just, they can just look at the show notes. So the so the idea is, like to help people actually solve their problems. That’s the whole point. And the thing about etanercept, the issues with it. You know about this by now, but for people who are listening, who might have just come across a toner sept and are curious about it, is that it’s out of patent.
Bill Gasiamis 1:05:53
So it’s been used for decades, literally decades, to help people treat rheumatoid arthritis and decrease the inflammation. It’s extremely well tested, but for people who are using it for rheumatoid arthritis for many, many decades, there’s a low risk of causing bleeds in the brain. I’m pretty sure, because of the use of it and the continuous use of it, it does have a negative effect after many, many years, and the doses that rheumatoid arthritis people get are so much higher than the doses that stroke survivors get and they get over a prolonged period of time. So there’s a little bit of concern about that.
Bill Gasiamis 1:06:33
And there’s no research being done, I know Dr. Tobinick is involved in doing a study and reporting back on the findings that he’s been able to achieve through the injections that he’s given so far to his private patients. But there’s not enough people funding studies for stroke, and there is one study in Australia that I’ve heard of that’s being done at the moment. I’m not sure what phase it’s at, and whether or not they’ve been able to report positively on the outcomes yet. So that’s the that’s the challenge with it. And for some people, it won’t work. And I think I understand why it won’t work, right?
Bill Gasiamis 1:07:17
So a little while ago, I did an awesome interview about hyperbaric oxygen therapy with a gentleman who is a doctor who His name is Amir Hadani, and the organization he works for have, they have therapy centers in the United States, in Israel, and I think In one other part of the world, I’m not exactly sure now, but the difference between Dr. Amir’s procedure and process, as opposed to Dr. Tobinick is the hyperbaric oxygen therapy center does a whole bunch of neurological scans to determine whether or not you are a candidate by looking for what they call penumbras.
Bill Gasiamis 1:08:07
Penumbras are areas of the brain that are kind of switched off as a result of the injury, but are likely to switch back on once the therapy is provided. And what you do is say you wanted to go and get hyperbaric oxygen therapy. It’s a two month course. I’m pretty sure it’s a two month course, daily oxygen therapy. And if you qualify, they know that you are likely to get a positive outcome before you start the procedure. So if you think about it like it makes it kind of a little more a little more legitimate in that I’m going there, they are going to know whether I’m a candidate for a positive outcome, and then I’m going to do the procedure.
Bill Gasiamis 1:08:58
Whereas with Dr. Tobinick, he doesn’t have those facilities. They’re not neurologists, they are general practitioners who give an injection like the general practitioner would to a rheumatoid arthritis patient, and then they hope for the best, and they hope that you were a candidate, and that you get a result. So one other thing that people can consider, seriously consider, is hyperbaric oxygen therapy under a very controlled environment, not the kind of therapy where you can go down to the local place that’s got a hyperbaric oxygen therapy tank in their clinic, right? And then you just go there, and you sit there for an hour, and you pay your 80 or 100 bucks, and then you leave.
Bill Gasiamis 1:09:44
Not one of those where it’s not monitored by doctors. This one in particular, they seem to target the same things that etanercepts target at tennis targets, although Dr. Tobinick maybe doesn’t include that you. The way that he describes the the patients who are eligible, because he doesn’t have that data. So this is how I’ve kind of understood what Dr. Tobinick is targeting, but hasn’t got the data to confirm whether you’re a whether you’re a, not a true candidate, but somebody who’s going to likely to get good results.
Preparation for Etanercept Treatment
Bill Gasiamis 1:10:28
So basically, what I’m trying to get at is the more information about your brain that you’ve got about the possibility of having those penumbras that are revivable, the more information you have, the better the decision that you’re going to be able to make about going to Dr. Tobinick and getting Etanercept done. What I love about Dr. Tobinick is that he’s doing the things that we are. Some people are begging the medical community to do for stroke survivors that they, for some reason, almost refuse not to do like it’s so silly that there is this massive amount of data that Dr. Tobinick has been able to gain over at least nine years that I know of that has been doing these procedures.
Bill Gasiamis 1:11:25
He’s got YouTube videos of hundreds of people who have had positive outcomes, and for some reason, somebody else on the planet hasn’t decided to hook up with this guy and go, How can we help stroke survivors get better outcomes, like, it’s so ridiculous I cannot understand that for the life of me.
Steve Lawrence 1:11:46
No. And it was the 60 minutes crew that got involved that made me kind of think, Okay, this might get some traction and might give some legitimate See to it.
Bill Gasiamis 1:12:01
Usually 60 minute cruise are trying to find, you know, the snake oil cells. When they’re trying to show you that these guys are scammers. Don’t go and spend your money there. These guys are doing the exact opposite in this particular case, you know, and the person who’s on the video has a perfect, you know, result as a as a result of the injection, within minutes on TV, and nobody else has gone, oh my god. Like, why don’t we work with this guy and help him get more results, more outcomes? Dumb.
Steve Lawrence 1:12:38
Yeah, that’s a conversation that I’d love to get answers for but it’s, it’s crazy, it you hear the that it’s the FDA, it’s big pharma, it’s all this stuff.
Bill Gasiamis 1:12:51
Look, it’s probably big pharma in that if it was patented and they had and they owned the rights to it, they would fund it no end because then they’d be able to sell it all around the world for stroke. But the fact that they’re not, I don’t know. I’m just glad we’re talking about it again, because this continues the conversation.
Bill Gasiamis 1:13:13
This gets more people curious, and maybe somewhere we can start, you know, chipping away at the things we need to chip away at to get the result and to get the procedure made available for more people and at a cheaper price, right? That’s really the most important thing, and hopefully even get it covered by medical insurance or something.
Steve Lawrence 1:13:35
Yeah, that’s the thing, if, if more people are aware of it, and it gets into the right ears, and people go, ding, these people are having strokes every day.
Bill Gasiamis 1:13:46
And, yeah, they’re not going to start.
Donna Lawrence 1:13:49
No, they’re not, since they found all the information about Dr. Tobinick, day in and day out, he’s watching a reading day in and day he passes it to me, or we watch it together. And yeah, at first I was like, Yeah, I don’t know about this. Yeah, I just don’t know about this. But sounds too good to be true, probably. And just like everybody on the internet, then I’m the type person started reading myself.
Donna Lawrence 1:14:18
But after we spoke to all these people that had good outcomes, and God bless the ones that has not but the ones that had good outcomes, it gave me more encouragement that this is really what we need to do, you know. And after we spoke to Dr. Tobinick with the first consultation over the phone. I was sold. I was sold. He wasn’t hiding any.
Steve Lawrence 1:14:48
He was he was very blunt about your chances. He said, I’ve dealt with what you’ve experienced and what you’re experiencing. He said, I’m not going to cure it, it may reduce it maybe. An 80% chance it works, a 20% chance it doesn’t.
Lifestyle Changes and Support 2 Years Post-Stroke
Donna Lawrence 1:15:03
Yeah, and there was quite a few times in the hour conversation, he says, We hope it works. We hope it gets you some satisfaction and some pain relief, but there’s no guarantees. You know, he kept saying there’s no guarantees. So he’s not hiding anything.
Donna Lawrence 1:15:25
He’s very he wants to get he wants, I think, if somebody came in and said, look, let’s work in partnership and get this done.
Donna Lawrence 1:15:31
he wants to help this meeting.
Steve Lawrence 1:15:33
He’ll, he’ll hand over. He’s showing the videos every, every week.
Bill Gasiamis 1:15:37
That’s the part that is interesting, is that there’s plenty of data, plenty of information. What would be good to hear from is people who didn’t get the result, and to get like somebody like that on a podcast interview and find out from them, you know, how it was for them not to get the result? I imagine some people are very disappointed when they go there. I’m sure pay the money and then get the result.
Donna Lawrence 1:16:07
It’s like I told Steve, we’re going to have to get the mindset that we’re going to go we’re going to hope and pray for the best, that that’s our thing. We’re going to hope and pray for any improvement. And if not, then at least he gave it his best shot.
Steve Lawrence 1:16:24
Yeah, I wouldn’t know unless I take the shot.
Bill Gasiamis 1:16:29
You gotta do it.
Steve Lawrence 1:16:30
I wonder if it’ll work. Well, that’s not going to fix it. I won’t know unless I take it. If it doesn’t work, it doesn’t work, I go on to the next hope.
Bill Gasiamis 1:16:43
Yeah, hyperbaric oxygen therapy man, no worries. Definitely there’s, yeah, it’s really good. Do you know why? Because it’s not invasive at all, and it and hyperbaric oxygen therapy, when it’s not done even clinically, has positive outcomes for people in their brain, because the brain gets more oxygen. So your brain, brain lights up. Your knees hurt less. Your back hurts less, like it fixes all these other things that are peripherally, kind of causing dramas. And then it said it it may also support that other part of the brain, and it’s non invasive, but I imagine it’s expensive.
Bill Gasiamis 1:17:17
I can’t imagine it’s cheap, especially, especially Doctor Amir’s process, because they are very rigorous in the way that a they treat you beforehand, and then also in the way that they administer the therapy and right you. But the thing about it is, you know if it’s going to work for you beforehand. Of the in the video, you see scans. He shows scans of a brain that looks like it’s going to be able to be rehabilitated. And then he shows the after, after the therapy and how it works like so it’s not all. Hope is not lost. If a tennercept doesn’t work, is basically what I’m trying to get out there.
Bill Gasiamis 1:17:58
You know, there’s more to it, and it’s just keep going after it. That’s That’s all I want to encourage people to do. And even if hyperbaric oxygen therapy is out of your budget, like even that, if you become a deep meditator and you learn how to breathe and do exercises with breathing, you know, Wim, Hof breathing and that kind of stuff, you can improve the circulation and the blood flow and the healing in your body.
Bill Gasiamis 1:18:25
So even that is not out of the question, and you can do that for free. You don’t have to go anywhere. Just jump on YouTube, click Wim, Hof, breathing, breathing method, and get somebody to take you through that exercise for free on YouTube, and you’ll get outcomes. You really will. So I just want to encourage everybody to just go after all the recovery they possibly can, you know.
Speaker 1 1:18:52
There’s no dead ends. It’s, there’s always something to try. Yeah.
Bill Gasiamis 1:18:57
Don’t die wondering. And be wary. And you need a donor in your life to be wary and go hang on a sec. What’s that junk? You know? What are you talking about? Let’s look at that deeper. You know, we can’t just jump into everything without looking at it.
Speaker 1 1:19:15
Well, we changed our lifestyle a bit. We used to be very outgoing and active outside, very physically active. We want to get back into that. That’s important. Our diets have changed. We’ve watched a lot of what we’re putting into us now, the stress is huge. I’ve let that go. I’m not going back to work if, if everything works out I was this close to the retirement, I’m not going to, you know, I’m going to not let that take me down beacuse I know.
Bill Gasiamis 1:19:49
You haven’t worked.
Speaker 1 1:19:51
No, no, it’s too physical of a job. I’ve been written off by the doctors saying, you know, the pain and they would. Expect me to go 100 miles an hour again. Yeah, back again.
Donna Lawrence 1:20:03
Mentally, mentally with deadlines, like five minute deadlines before it goes to air.
Steve Lawrence 1:20:08
Yeah, there was a lot of that. But physically, it wasn’t that bad, but it was all in that in the head that you get this done every day. So I’ve eliminated that limited, yeah, watch the diet. Watch, you know, just start putting stress. That’s the beginning. One thing I did find out, though I have in my head, is something called small vessel disease. Have you ever heard of that?
Steve Lawrence 1:20:30
No, tell me about it.
Steve Lawrence 1:20:32
It’s well, I don’t know much other than that’s what happened to one of the vessels in my brain when they did the MRI, it was a small vessel that burst and the blood bleed leaked into the areas that caused the deficits that I have, and with a blood pressure of 212 that would do it.
Donna Lawrence 1:20:55
And the other in the hospital, we found out that he has a slight aneurysm in his.
Steve Lawrence 1:21:05
Lower descending aorta.
Donna Lawrence 1:21:10
40 millimeters, and which our cardiologist said that if it got to 60, that that would be a little love. We will need to do something, but they’re monitoring it. They weren’t doing it every six months now, he said, we’re going to stretch you. Since we didn’t see any growth in it, we’ll stretch you to a year before we you know.
Speaker 1 1:21:31
So the good thing of having a stroke is now I’m taking care of myself better. I didn’t know this thing about my heart. Now I can get that checked. Other things that are going on in my head, managing that.
Donna Lawrence 1:21:47
But it’s everybody that our story has touched, that that’s now either on high blood pressure medicine or they have a machine.
Speaker 1 1:22:00
Everybody in my family went out bought a blood pressure machine, because the only other time you can get your blood pressure is at the doctor and the pharmacy. Everybody, all my friends, are interested for knowing, like, what happened, and we’re all on the same page, doing the same thing. Why did it happen to you and not me. So they’re watching their lifestyles and how they do things differently. That’s good, man. One other thing I’ve started to do is give back. So I found some people that and this happened to me when I was in rehab.
Steve Lawrence 1:22:34
Part of the OT was people who have had strokes and have recovered and wanted to come back and talk about like, this is me five years out when I was like, you you know you’re thinking, you’re in the hospital. Oh god, you know, I’m not going to ever be able to do this or that. Well, these guys gave you hope, and maybe it would work. Maybe it didn’t. Depends on how you interpret it.
Steve Lawrence 1:23:03
One of those gentlemen and his wife were here two days after I got home from the hospital to talk to Donna about what she can expect to help you know me get around during my stay in the hospital, we actually moved that was planned, and we’re in a place now where everything there’s no stairs or obstacles. So that was just another blessing that happened. But I’m giving back to people who want to talk about it like it’s, it’s hard on the head, like emotionally, oh my god, my life, especially younger people.
Steve Lawrence 1:23:44
One of the guys I’ve reached out to, I talked to once a month or so, and he he’s having a rough go with, you know, his physicalness, he used to be outside doing everything and but he realizes it’s, it’s a day by day thing, and it’s going to take time, and if you got a good, positive brain set and good people around you, hopefully you can put this all behind you someday, and you’re not going to be perfect and you’re hard to accept that.
Bill Gasiamis 1:24:17
You mentioned two chapters of my book, chapter one, mindset, and I think chapter eight is community building the right community around you. And it’s so important your mindset needs to be able to focus the majority of the time on the positives and where you’re heading and where you want to be and where you want to go. And it’s allowed also to, every once in a while get negative and think about the terrible things and all that kind of stuff, you know, because it’s part of the cycle, and it’s part of the ups and downs.
Bill Gasiamis 1:24:50
But if you spend some time there, but then spend the majority of your time focusing on your goal and not not the timeline to get to your goal. Just the goal where it is, then you’re likely to move closer toward it. And also, if you surround yourself with encouraging people and people who are going to support your desire to overcome things and be better, then you’re more likely to get there as well. Because if you got those, those negative nancies around you, oh my gosh, that’s even harder.
Donna Lawrence 1:25:26
I know, and the internet’s horrible.
Steve Lawrence 1:25:30
Parts of it is there. There are, there are good resources out there.
Bill Gasiamis 1:25:34
But Instagram, recovery after stroke on Instagram, I mean, you come to my podcast. There’s no negative answers there. They’re not allowed. But also, isn’t that amazing? I’m followed by about five and a half 1000 people, I think something like that. And I put a post up, and all you get is amazing responses about where they’re at, where they’re going, how they’re coming along. Sure, you also get the people going. I never got a good result out of that, or never. But nobody comes on there and gives anybody a hard time or calls us, you know, crazy, or anything like that.
Bill Gasiamis 1:26:10
It’s all positive. It’s all about trying to put the information out there and get people over the line in something that’s a difficult time, and all the questions that I ask are questions that I was curious about, or somebody has contacted me and said, Can you ask the community this? Because I want to see what happens. And we’ve answered questions like, do you hear voices in your ear after after the stroke, you know? And I thought, There’s no way that’s related to the stroke. And of course, on the stroke side.
Bill Gasiamis 1:26:40
Some people hear voices in their ear that aren’t really there, and at the beginning, it was driving them crazy, and now they’re just getting to understand it and used to it, and they kind of ignore it like that’s what that’s what I was looking for. I’m glad that that community kind of thing exists, and that the podcast exists, and people like you reach out to share. And what’s really cool is that you’re doing what a lot of other stroke survivors do instinctively, is immediately think about helping other people.
Bill Gasiamis 1:27:14
That’s just brilliant to me, like that’s so great that we do that. I i Even catch myself out doing it, and every once in a while ago, you never would have done that stuff before. Like, what are you doing? Who are you? Who is this person? You know, it’s really awesome.
Donna Lawrence 1:27:32
I think it everything that happens to you, happens for reasons, but I think it changes the perspective that you have in life. But I know even like, you’ve probably got people that don’t have caregivers or that do have caregivers and and that’s another aspect that it’s it’s hard. There are days that, mentally, it’s hard at first for god, the first year was just like, whoa, you know, how am I going to you?
Steve Lawrence 1:28:10
Do need that community? Yeah, without her, like, I wouldn’t have been able to talk to you today, or think about would have jumped out the window or cut my leg off.
Bill Gasiamis 1:28:21
Yeah, don’t go there yet. No, follow all those other paths. Look, guys, it’s been a real pleasure to chat to you both. Thank you so much for being on the podcast. I really wish you well with your upcoming procedure. Please let me know how it goes. I just fingers crossed that it goes well for you. And yeah, thanks for reaching out. I really appreciate you sharing your story.
Steve Lawrence 1:28:46
Thanks. Yeah, we will. Thanks for having your podcast and and helping people with this is great. Lot of people are going to get better with the community.
Donna Lawrence 1:28:56
Yeah, and information.
Steve Lawrence 1:28:59
Thanks, buddy.
Bill Gasiamis 1:29:00
Well, that’s it for another episode. I hope you found Steve and Donner’s story of stroke recovery after two years as insightful and as inspiring as I did, their perseverance through challenges like sensory overload and rehab shows the importance of support and resilience. A huge thank you to everyone who has left a review. It helps others find the podcast, and it provides vital support for stroke survivors in need. If you haven’t yet, please consider leaving a five star review and sharing what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:29:36
The more people interact with iTunes and Spotify, the more Spotify and iTunes will make the podcast viewable and put it in front of people who need it. For those watching on YouTube, remember to leave a comment. I love receiving your comments, and I will respond to all of them, like the episode and subscribe to the. Channel to get notification of future episodes. If you’d like to support the podcast further, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke, your support keeps this podcast going and helps us continue sharing these powerful stories.
Bill Gasiamis 1:30:20
If you’re a stroke survivor with a story to share, come and join me on the show. It’s a great time to join me. The interviews are not scripted. You do not have to plan for them. Just come as you are and share your experience. If you have a commercial product or a service that supports stroke recovery, consider being a part of a sponsored episode. Visit recoveryafterstroke.com/contact, fill out the form and we’ll connect via zoom. Thanks so much for tuning in. Your support means the world to me, and I look forward to seeing you in the next episode.
Intro 1:30:55
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis.
Intro 1:31:25
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:31:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:32:14
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.
