Recovery After Stroke

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Recovery After Stroke episodes

April 08, 2024After The Crash – Kelly Tuttle
Understanding Traumatic Brain Injury
Traumatic brain injury (TBI) is a complex medical condition resulting from a sudden blow or jolt to the head, causing damage to the brain. At its core, TBI disrupts normal brain function, often leading to severe consequences if left untreated. Here, we delve into the depths of TBI, exploring its causes, symptoms, diagnosis, treatment options, and prevention strategies.
Causes of Traumatic Brain Injury
TBI can stem from various incidents, including:
Accidents: Motor vehicle accidents, falls, and sports-related injuries are common culprits.
Violence: Physical assaults, gunshot wounds, and combat injuries can inflict significant damage.
Blast Injuries: Military personnel and civilians exposed to explosive blasts are at risk.
Penetrating Injuries: Objects penetrating the skull, such as bullets or shattered fragments, can cause TBI.
Symptoms of Traumatic Brain Injury
The symptoms of TBI can range from mild to severe and may include:
Physical Symptoms: Headaches, nausea, vomiting, dizziness, and loss of coordination.
Cognitive Symptoms: Memory problems, difficulty concentrating, and confusion.
Emotional Symptoms: Mood swings, irritability, anxiety, and depression.
Sensory Symptoms: Blurred vision, ringing in the ears, and sensitivity to light or sound.
Diagnosis and Evaluation
Diagnosing TBI involves a comprehensive evaluation, which may include:
Physical Examination: Assessing neurological function, reflexes, and motor skills.
Imaging Studies: CT scans and MRIs help visualize brain injuries and assess their severity.
Cognitive Tests: Evaluating memory, concentration, and cognitive abilities.
Patient History: Gathering information about the injury, symptoms, and medical history.
Treatment Approaches
Treatment for TBI depends on the severity and type of injury, and may include:
Monitoring and Observation: Mild cases may require only observation and rest.
Medications: Pain relievers, anti-seizure drugs, and antidepressants may alleviate symptoms.
Rehabilitation Therapy: Physical, occupational, and speech therapy help restore lost abilities.
Surgery: In severe cases, surgery may be necessary to repair skull fractures or remove hematomas.
Preventing Traumatic Brain Injury
Prevention is key to reducing the risk of TBI. Some preventive measures include:
Wearing Seatbelts: Properly restraining in vehicles can prevent head injuries during accidents.
Using Helmets: Wearing helmets during sports activities, cycling, and motorcycling can protect the head.
Fall Prevention: Installing handrails, using non-slip mats, and maintaining a clutter-free environment can prevent falls.
Safety Measures: Adhering to safety guidelines at work and following firearm safety protocols can prevent TBI.cols);
In conclusion, understanding TBI is crucial for early detection, treatment, and prevention. By raising awareness and implementing preventive measures, we can mitigate the impact of traumatic brain injuries and enhance overall well-being.
After The Crash – Full Interview with Kelly Tuttle
Kelly Tuttle, a neurology nurse practitioner living with an acquired brain injury stemming from an automobile collision, mirrors that of stroke survivors in many ways. Despite these variances, the impact on daily life remains similar. Kelly’s recent publication, “After the Crash,” serves as a guiding beacon for those traversing the arduous path of recovery from traumatic brain injuries.
Instagram
Kelly’s Website
Highlights:
00:00 Introduction
05:14 Decision-making after a car accident
10:02 What caused the traumatic brain injury
17:55 Common issues in seeing a neurologist
19:25 Physical Medicine Rehabilitative Doctor (PMR)
25:17 Bill’s Book The Unexpected Way That Stroke Became The Best Thing That Happened
27:06 Dealing with sensory overload and invisible challenges
33:00 Unknown dangers in contact sports
40:24 Navigating neurofatigue and noise cancellation technology.
50:24 The Book: After The Crash By Kelly Tuttle
1:00:27 Different learning curves
1:06:46 The hardest thing about TBI
1:07:37 What has TBI taught Kelly Tuttle
1:09:36 A piece of advice from Kelly Tuttle
Transcript:
Introduction – Kelly Tuttle

Bill Gasiamis 0:00
Hello, everybody, this is episode 299 my guest today is Kelly Tuttle, a neurology nurse practitioner who is living with an acquired brain injury that occurred not as a result of a stroke but rather from a traumatic brain injury. Also referred to as a TBI, which was caused by a rather dramatic automobile collision.
Bill Gasiamis 0:25
Her story and the challenges she is working to overcome bear a remarkable resemblance to that of a stroke survivor with some distinct differences in the way her diagnosis came to be. But a lot of similarities in how daily life has been impacted by the injury. Kelly recently published her book After the Crash, which is a guide for those navigating the challenging journey of recovery after a traumatic brain injury. Kelly Tuttle, welcome to the podcast.
Kelly Tuttle 0:58
Well, thank you for having me. I’m excited to talk to your listeners today.
Bill Gasiamis 1:01
Thank you for being here. You’re not a stroke survivor. And that’s okay. Because we don’t necessarily want everyone to be a stroke survivor who joins us on the podcast. But you are a TBI survivor. You had a traumatic brain injury at some point in your life, can you give us a little bit of an understanding of how that came about?
Kelly Tuttle 1:23
So I was driving home from work down a rural road and the driver pulled out in front of me at the last minute. And I ended up T boning them and being in a big car accident and thought I would shake off the car accident and get back into life. And as time went by, I found that was not the case.
Bill Gasiamis 1:52
So in the collision, how many people were in your car and how many people were in the other car?
Kelly Tuttle 1:58
Fortunately, no one was with me. And I think there was only one person in the other car.
Bill Gasiamis 2:05
I and if you T boned them. Did you touch them on the driver’s side or the passenger’s side?
Speaker 1 2:13
I hit the driver side of the other car I think the driver side.
Bill Gasiamis 2:21
And then what happens then? Do all the emergency services turn up? What’s the scene like after that?
Speaker 1 2:28
I was pretty terrible. Yeah, there’s glass everywhere. My car ended up being totaled, my engine was smoking, people came out from the homes that were along that street, traffic was stopped, and then I did say an ambulance came out, and then the police officers of course investigated the the car crash and since my car was not drivable, it was towed away.
Kelly Tuttle 3:06
I was taken with the police officers to kind of a local cafe to hang out waiting for my husband to pick me up because I was about over an hour away from home at the time so they couldn’t just leave me on the side of the road to wait to get picked up.
Kelly Tuttle 3:28
And I was offered to be taken to by ambulance but because of my nursing background, I did spend some time in the emergency room as a nurse. I just didn’t want to go by ambulance. Which you know, in hindsight was probably not too smart, but 2020.
Bill Gasiamis 3:52
Yeah. Is that because you thought I was not unwell enough? Or somebody else is probably going to need that ambulance that’s in more serious harm than me.
Kelly Tuttle 4:06
No, it was more of I know what happens to people in car accidents they usually get placed on a C spine board and a C collar which is extremely stiff so you can’t move your head and then you’re left on that board in the emergency room until a doctor can come and see you and they do a CT scan of your neck to make sure you don’t have a cervical fracture. And then you get released and examined for other injuries and I didn’t want it. No one did what I did. Please do not listen to what I just did.
Bill Gasiamis 4:53
I’m gonna gotta pick this scab a little further now Kelly. So you’re a nurse how many years in nursing at that stage?
Kelly Tuttle 5:09
Close to 3027 years, something like that.
Decision-making after a car accident
Bill Gasiamis 5:13
And if you turned up on the scene, and there were another two people on that scene that were involved in their collision, and you were just a passerby, you would have said, I’m a nurse, everyone doesn’t do anything, don’t move, lay flat, do this, do that you would have taken control of the situation, you would have made sure don’t move your neck, you would have said all these things, you would have checked out everything.
Bill Gasiamis 5:36
But somehow that doesn’t apply to you. Because and don’t get me wrong, I see this, across all the people who I interviewed their stroke survivors, they might have a whole bunch of different backgrounds. But they never wake up in the morning thinking I’m going to have a stroke today so therefore, I’m going to do all the right things.
Bill Gasiamis 5:57
They always think it’s not going to happen to me. So you know that the procedure to protect the neck to make sure there are no fractures is to potentially save a life, and make sure that a disability doesn’t happen. Make sure that the person doesn’t end up not walking, or not being able to participate in life, etc. There’s a whole bunch of reasons why they do it. Did you feel well enough? And you made a decision based on how you felt that none of those things were necessary? I’m okay.
Kelly Tuttle 6:33
Well, it’s not like I had clear thinking. You know, your adrenaline’s going, you’re working off adrenaline. I’m not sure to this day, if I had lost consciousness. Obviously, in hindsight, I had a brain injury. And all I went into was thinking, not that it was good thinking, I’m not saying it was, I’m going to shake this off, I’m fine, I am gonna go to work the next day, I can’t take time off I was training for my third degree Black Belt in karate, and I’m training for the purple belt in Brazilian Jiu-Jitsu.
Kelly Tuttle 7:31
So I had a lot on my plate, and I did not have time to sit and relax. But I also don’t think that my thinking was clear. And I’d like to emphasize that. So if a caregiver or our friend sees this happen to a friend, you really should keep a close eye on them. Because they may not be thinking right, their brains not working right.
Kelly Tuttle 7:59
It’s, you know that it’s had an injury. So they’re not going to be making good decisions. Myself, I lost my self-awareness. So I wasn’t aware of my limitations. I kept trying to push myself. I ended up falling asleep at the wheel down the road because I was suffering from Neuro fatigue, which stroke survivors are very aware of.
Bill Gasiamis 8:26
Yeah down the road usually about months later.
Kelly Tuttle 8:31
Yeah, I think a couple Yeah, it was like two or three months later that around that period, I had fallen asleep at the wheel.
Bill Gasiamis 8:41
We’ll talk about that as well then. So you’re tough as nails, you’re Brazilian Jujitsu, you’re 3rd Dan black belt, martial artist. You’re, you know, you’re an alpha personality. I mean, nothing is getting in the way of you shaking this off and walking away and going back to business as normal.
Bill Gasiamis 9:07
It completely makes sense to me. And I get the stories, almost exactly. Identical story for somebody who’s had a stroke, you know, I’m gonna shake it off, I’ve got work to do, I’ve got appointments to get over that stuff to do. Everyone’s got stuff to do everyone’s busy. And they can’t possibly comprehend that this thing is something that they need to attend to the numb leg, or the dizziness, or the sinking feeling in the gut or, you know, these strange things that they’ve never experienced before.
Bill Gasiamis 9:38
They don’t have a reference structure to be able to go, Hey, this is familiar to me. I know what this is. I’m going to do something about it and you might have to be a nurse or you see the other end of it. You see people turn up to the hospital, but you have never been the person who’s becoming the patient.
What caused the traumatic brain injury (TBI)

Bill Gasiamis 10:02
You’re never seeing that part of the process. You’re just seeing the person on the other end of that process. So you’re making the wrong decisions, in hindsight, but the right decisions in your mind at the moment. How do you think you sustained the actual brain injury? Did the airbags go off? Did you hit your head anywhere?
Kelly Tuttle 10:24
Yes, the airbags went off. I had bruising on my forehead. So I knew my doctor could tell there had been an impact. And so you know, when I looked back and was researching brain injuries and how to recover, I realized I had the acceleration-deceleration type injury where the brain when you’re suddenly stopped, will slam against the front part of your skull and then bounce to the back and then maybe a couple more times.
Kelly Tuttle 11:05
But in my car accident, I had not only T-boned the person, but my car twisted, and I think I got a little bit of that torsion-type injury along with that. And so that, as you know, can cause mayhem in the brain. There, I did eventually down the road, I had a specialized MRI and I did notice it did account for diffuse axonal damage.
Kelly Tuttle 11:43
And that’s when the little connections between the brain cells and neurons are severed. And so that that did show up. And I just think kind of, you know, that’s what you would find on that type of injury. So people should be aware of if they have a fall, anything that sudden, you know, sudden stop, you steal it from an acceleration, deceleration quickly. And then any fall that there’s some twisting going on, is going to make recovery a little bit tougher.
Bill Gasiamis 12:23
axon damage, is that localized? Or is it spread over a large area? Do you are you able to sort of know, to what extent that damage has occurred?
Kelly Tuttle 12:35
Not me, I don’t know how to read MRIs. It was just read on the MRI report, and I imagine it is a generalized injury, as opposed to an ischemic stroke where it’s more localized.
Bill Gasiamis 12:53
Okay. So could be a lot more of the brain impacted than what might happen in a bank to the head, that is just direct the director to one location. So for example, if you just hit your head, on, on a window on a car windscreen in a slower collision and collision that wasn’t so dramatic, you might have just had localized damage. But in this case, you’ve not only hit your head forward, but your brain may have hit on the inside at the front of the skull.
Bill Gasiamis 13:31
But also at the back of the skull. And then the twisting also created an additional layer of the challenge of damage to the brain. So when you finally realized that things weren’t right, was that soon after your husband picked you up? How did you finally realize that this collision, I’m not shaking it off? It hasn’t been? What I thought, I’m not going to just walk away from this.
Intro 14:03
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 14:27
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions To Ask Your Doctor About Your Stroke.
Intro 14:46
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, recoverafterstroke.com and download the guide. It’s free.
Kelly Tuttle 15:06
Um, it was the biggest thing that was a trigger was I went out to lunch with one of my nurse practitioner colleagues who was working in neurology. And she was curious about my recovery, and thank goodness. And she asked me how I was doing. And I mentioned that I had fallen asleep at the wheel. And she was like, what? You fell asleep at the wheel? And I was like, Yeah, I fell asleep at the wheel.
Kelly Tuttle 15:37
So now I have to take a nap, you know, halfway in between work and home. And good things. That’s okay. Well, first of all, who thinks it’s okay to slightly close your eyes and put your head back while you’re driving? I did that, you just don’t think clearly, you know? And so, fortunately, she said, that’s not okay.
Kelly Tuttle 16:05
She was very nice about it. But she’s basically like, that’s not okay. You need to get a head CT, I still haven’t had any head imaging at this time. You need to see a neurologist and you need to see a physical medicine rehab doctor, and she said, PMR, I was like, what’s PMR? And she’s like, Oh, it’s a physical medicine and rehab doctor, and I’m like, Oh, okay.
Kelly Tuttle 16:35
And it turns out, you know, I went to school and learned, they were for psychiatrists. And now they’re known as physical medicine, rehab doctors. And as you know, they specialize in injuries to the central nervous system in the brain and spine. So they’re the person you want to see, after a head injury or a stroke. For sure, rather than then a neurologist, people think, oh, I should see a neurologist.
Kelly Tuttle 17:05
Well, I’m a neurology nurse practitioner. And what I learned is that they take care of people with brain diseases like Parkinson’s, multiple sclerosis, and epilepsy, so they’re not going to be too much help for someone with a brain injury, or a stroke.
Kelly Tuttle 17:25
Because stroke is also like, seriously, the foundation of recovering and preventing a second stroke is a lifestyle, right? You gotta have the exercise gotta eat well, you got to have your numbers looking good. If you have diabetes, that needs to be controlled, if you have hypertension, that needs to be controlled, your cholesterol has to look good. You know, and that’s a lot of lifestyle stuff. And your primary care doctor, your regular physician is very good at helping you with that.
Common issues in seeing a neurologist
Bill Gasiamis 17:57
Okay, this is a really important thing that you’ve just said, because I have so many conversations with people who saw the neurologist, and they’re just perpetually frustrated with the fact that they don’t do anything. And they can continuously complain about the fact that I went to the neurologist, and the neurologist was useless. That can’t be useless. Neurologists know a lot of things about brands but what they are struggling to do is guide somebody on the path towards recovery, like what should I do? How should I do it, etc.
Bill Gasiamis 18:33
That’s the thing that they struggle with. Stroke survivors go there looking for answers thinking that this person will advise them on what might have caused the stroke. If it was an ischemic stroke that doesn’t seem to have a cause, for example, where the damage is what they can do to rehabilitate it.
Bill Gasiamis 18:53
If there’s no information like that then you just don’t seem to be able to do that. We’ve got through now almost, this is probably 298 episodes, and I still haven’t been able to help people with what to do next. If your neurologist can’t help you, so just so we can emphasize it. Stroke Survivors should be seeking out the assistance of a physical, what was it?
Physical Medicine Rehabilitative Doctor
Kelly Tuttle 19:23
Medicine Rehabilitative Doctor PMR is usually what you may hear their title being and they are really good stepping stones to getting you to the right care now. There are different strokes as you are well aware bill, there are people who can get discharged who are discharged to read have facilities because they need intensive care, which I always recommend, if you’re discharging doctors say, you should go to a rehab facility because the, the physical therapy, occupational therapist, speech therapy is so intense, it’s gonna make a difference in your recovery.
Kelly Tuttle 20:24
But if you’re one of those people who has a small stroke, then you will get discharged home. And, you know, if you have a stroke, that doesn’t affect, like, a side of your body, maybe it just affected your speech for a little bit. And now you’re having maybe some cognitive issues with like problem-solving or speaking, then outpatient, we should also see those specialists, like the speech therapists, occupational therapists, the physical therapist.
Kelly Tuttle 21:10
If you do have some mild issues, like some hand weakness, or some leg weakness, your physical therapist is going to help you with that, if you have balance issues, your neuro therapist is going to help you with that they’re amazing also. And don’t miss out on those therapies. They’re so important, and they’re so specific to what’s going on with your brain. So they’re wonderful professionals who have amazing input to provide for you and your family.
Bill Gasiamis 21:51
Yeah, lovely bits of advice there, we’ll make sure that people can go to the show notes and get the lowdown on that and find out if they have somebody near their area, or be able to look for the names and the titles of those people and then see whether or not they can go there. Go to their local Google and search for those types of services if that’s what they need.
Bill Gasiamis 22:19
So your husband has come to pick you up. We haven’t got to the stage where you’ve finally gone home. A couple of months later, a little while later, your amazing colleague says something’s not right. But in that time between the collision and your colleague going hang on a sec. This is not right. Did you go back to life as normal? Was life? Okay? Was there some signs in hindsight that things were not right other than the fatigue?
Kelly Tuttle 22:59
Ah, yes. So I went to work the next day. And my friend, one of my friends drove me. And when I got to a meeting, I was meeting with a large group of nurses. They all noticed that I wasn’t acting right or speaking correctly. We were gonna go take a break. And so I say, Hey, let’s go out and get some Star Track. And they’re like, What, and I was gonna get some Starbucks. And they, you know, we laughed it off, but I did get the you will see your doctor tomorrow.
Kelly Tuttle 23:41
Speech. And I did. My doctor diagnosed me with a concussion and took me off work for two weeks. And I thought, I got this feeling that I was supposed to do better in two weeks, and I can go back to life because remember, I was in I was biting at the bit to keep training for my black belt test. Yeah, and so I was so yeah, I went back to training, working at anything, you know, that I had on my plate at the time I was still trying to address and I found that I had difficulty doing Katas that I had been doing over and over again for 13 years prior.
Kelly Tuttle 24:34
And I tell my foot to move forward it would step back. I used to train for hours and I couldn’t even do a Kata for two minutes without being short of breath and having a massive headache. My husband was helping me train he called out a Kata and the name of the Kata. And I was too mediately do and I wasn’t, you know, remembering the moves or what to do, or I was mixing up the names of things I had been doing for over, you know, 10 years.
Bill’s Book: The Unexpected Way That Stroke Became The Best Thing That Happened

Bill Gasiamis 25:17
We’ll be back with my guest in a minute. But first, let me tell you about my new book called The Unexpected Way That Stroke Became The Best Thing That Happened. When you move past the triggering title, you can read a book, which is about the 10 tools for recovery and personal transformation after a stroke.
Bill Gasiamis 25:37
It tells the story of 10 stroke survivors and the steps that they took, that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection filled with many opportunities for growth and personal transformation.
Bill Gasiamis 25:56
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. To grab a copy, just typed my name, Bill Gasiamis to the amazon.com search bar.
Kelly Tuttle 26:17
So those were some signs. I also had difficulty with my memory, I would review one of my patient’s charts in my office and then go to see my patient. By the time I saw my patient, I had forgotten everything I reviewed. And so I had to take notes and carry the paper with me to the room to remember what I had just read. So there is that memory issue. I also started wearing headphones, because the conversations outside my office that I normally was able to filter out I couldn’t handle anymore.
Kelly Tuttle dealing with sensory overload and other invisible challenges
Kelly Tuttle 27:06
And so I started wearing headphones just to kind of block that so I could concentrate. I had light sensitivity and I had dizziness and nausea. Whenever I would work on a computer or scroll up and down on my phone, and I couldn’t watch the TV, it was too bright, it was too loud and things moved too fast on it. So those were a few of the things that happened in the beginning.
Kelly Tuttle 27:48
And then I ended up failing my third-degree black belt, of course, you know. And I was upset about it. And my normal personality would be I’d be upset for a couple of weeks. And I’d say I’m gonna pick myself up, I’m gonna do this and I’m gonna even do it better. But I was so emotionally upset about it six weeks later. That is so not me. You know. And so I had a lot of emotional issues, and irritability and anger and stuff. And you know, when you look back Well, those are symptoms of a brain injury.
Bill Gasiamis 28:29
Everyone listening here is just relating with you. Everyone’s just holding their heart going oh my god, Kelly. We know what you went through. We get it what’s your self-talk like? Because you know, your two weeks at home, I’m going to be better than I go to work and then things are not good. And then I can’t get my next Dan level kind of over the line.
Bill Gasiamis 28:57
I can’t do all these things. What are you saying to yourself other than being emotionally upset six weeks after you’ve failed your black third Dan What are you saying to yourself? Are you looking at yourself in the mirror and going through with you or how do you go about life when everything is so flipped upside down and you’re not recognizing this version of yourself?
Kelly Tuttle 29:27
Well, first of all, I was I didn’t have that self-awareness. So I couldn’t even go this is not me. That took a long time to come back. And I And and it was one day I tried to go back to the dojo to train and I laughed upset just, you know, demoralized and I went home and I was like This is not me, something’s wrong. And I went back and I read all the paperwork that I had had from the concussion and stuff that I looked at to help get better.
Kelly Tuttle 30:11
And I realized, oh my gosh, I’m getting worse, not better. And so then I sat down with my husband, and I said, Yeah, I think I’m not better yet. And he goes, Yeah, you’re not, your brains not right. So I was like, why didn’t you say something to me this whole time? And he goes, I didn’t want to hurt your feelings.
Bill Gasiamis 30:51
What a legend.
Kelly Tuttle 30:53
Yes, yes. And so that’s when I, you know, started to that. And then shortly after that, I talked to my colleagues and said, hey, you need to get seen by specialists get the head scans, and so forth.
Bill Gasiamis 31:08
Your husband was afraid you were gonna put him in a headlock or something?
Kelly Tuttle 31:12
Probably.
Bill Gasiamis 31:17
Oh, my gosh, I’m gonna let you continue the conversation, your story in a minute, but your sensei is probably going, Who is this person? What is going on with her? Why is she no good all of a sudden, she was my perfect student, she, you know, she’s done everything, she’s a lethal weapon. And now she’s not thinking straight, she’s not able to achieve anything. Was your sensei giving you any feedback? Were the people in the dojo giving you any feedback?
Kelly Tuttle 31:51
You know, what I have thought about that. And I thought, you know, they had some students that were training along with me, and they had injuries, broken foot, and, and so forth. And they modified their tests for them. They were able to pass their tests after the modified test and accommodations for their injuries. But they didn’t do that for me.
Kelly Tuttle 32:22
And now looking back, knowing what I know, I realize it’s because my injury was invisible, and that they were not knowledgeable about concussions and brain injuries and how they can affect their students. So that’s a knowledge gap. That is out there. And I realized after the fact that they just didn’t know they had no idea. I mean, I didn’t have any idea. So I was having a hard time explaining. I just kept saying, Oh, my neck hurts. I have a headache.
Unknown dangers in contact sports like TBI
Bill Gasiamis 33:00
I’ve had a couple of guys on the podcast who are BJJ practitioners, and they both had a stroke because of a carotid artery, or dissection because of a choke. That particular injury seems to be common in the sport. However, people within the dojo don’t understand what choking somebody could do to the neck, or the blood vessels today, or down the track a few days down the track, there’s no awareness whatsoever.
Bill Gasiamis 33:38
It’s a big issue. So that’s why I asked, I was just curious. And I didn’t expect you to say that I of course, they were completely aware of what had happened, and they were onto it and all that kind of stuff they couldn’t possibly be they’re not medically trained at all. And they don’t understand what it looks like to have an invisible neurological condition unless they’ve had one.
Bill Gasiamis 34:02
And unless they spent so much time like you and me writing books about it, and being on podcasts and interviewing people and all that type of thing. So we’ll give them the benefit of the doubt will, will, will say look, that makes sense that they didn’t respond. Your husband also is in the same situation, you know, he’s just going along.
Bill Gasiamis 34:26
Life as per normal, thinks you’re a little bit off, doesn’t want to say anything. Because he’s not certain doesn’t want to upset you. But eventually, he says something. And then how does the next part of the conversation go? What happens after he says I didn’t want to want to hurt your feelings.
Kelly Tuttle 34:47
Like why did you tell me it’s like, Well, I kind of tried, and he did. He said, Hey, I don’t think you should continue training. I think you should take a break. I don’t think you should go and do your testing, but I didn’t hear it because I was just like, I want to meet this goal, I’m in the best condition fighting strength that I’m at, you know, because I’ve been training, I was, you know, trained 13 years, but I trained intensely the year before.
Kelly Tuttle 35:19
And I didn’t want to give that up. And, but he did try. And then the other thing was that I was having to sleep a lot. And I was sleeping like 1214 hours a day, and taking two-hour naps, you know, on the weekend, and then I go to work, come home, go to sleep, and then wake up, go to work the next day and do it all over again.
Kelly Tuttle 35:48
And so what happened was, all the childcare and the household stuff fell on him all of a sudden, and he, you know, was very overwhelmed. He’s just like, where’s my partner, you know, it took her away and replaced her with this person who is not so nice to get along with. So he’s also not thinking clearly because he’s just trying to be there for the kids and stay on top of the dinners and laundry and all that stuff, too. So it was a rough couple of years. In the first two years after my brain injury,
Bill Gasiamis 36:33
yeah. Did your husband at the time? Notice that it was all this stuff started after the collision? Was that dot kind of realized? She’s not been the same since that collision. Did that happen at some stage? Or was that an aha moment later on?
Kelly Tuttle 36:55
I think he noticed it right away. Yeah, cuz he was the one with a brain that was working.
Bill Gasiamis 37:04
Yeah. I know. I mean, like, it’s so relatable all the stuff that you say, because no matter because stroke survivors all have their version of a TBI. And we’re all sensitive to light. We’re all sensitive to sound. I was out at the most amazing place in Melbourne today, yesterday with my wife. It’s overlooking the river. It’s under some massive beautiful trees, it’s outside, there’s tables.
Bill Gasiamis 37:36
There’s a restaurant there. You know, it’s nice and thin. When I say nice and thin, you know, it’s maybe only about six meters deep, but it’s very, very long. And it’s on the most amazing riverbank. There are people everywhere, it’s a beautiful, sunny autumn day. And they’ve got music. On the above our heads in the in the trees, the speaker’s net, and There’s music everywhere.
Bill Gasiamis 38:06
And it’s chilled. But down below, there is a barge. And so the place is called Arbery. So it’s called Aubrey because it’s under a whole bunch of trees. However, just the, on the river, where the path is where the sidewalk is where people walk along the river, there’s a floating version of it, they call it bribery of float. And they are the same business but different venues.
Bill Gasiamis 38:34
And they’ve got different music playing on the float right on the barge. And it’s pumping over there. Everyone’s having a good time. And they’ve got music on this side. And I’m losing my mind. And Christine says, all of a sudden, she says, You these guys, they should just switch the music off from one of these venues because we can’t hear both of them correctly.
Bill Gasiamis 39:01
And just as soon as she says it. I’ve just gone. Oh my god. That’s why I’m losing my mind here. I can’t cope. It’s too loud. And on my left ear, I’m getting this sound on my radio, I’m getting this sound, and the mash of him is just driving me bananas. And I’m just not enjoying myself and I. And I said to her about 10 minutes later, our meal hadn’t come yet. So we’re still waiting to eat.
Bill Gasiamis 39:27
And I said to her, I can’t get what you said about the music. Now I’ve noticed that I can’t get it out of my mind. It’s driving me bananas. And we just sit in there. And she’s going oh my god, what sort of a date would this have been if we were meeting on a date I would have left you here. And I was acting all strange and being weird and I couldn’t sit down. My left-side deficits were playing up because it was a little bit warm. I was just I was just not I was like fidgeting. I couldn’t sit still I couldn’t do anything.
Bill Gasiamis 39:59
And I still look I don’t know what’s going on. Well, I know what’s going on. But coming back coping or can’t deal with all this, anyhow, the meal came, we ate, of course, her meal came first mine took another five minutes to come I ate after her. And then finally, when we got the meal done had to get out of there, we just got up and left. And I realized, and we were walking around the central business district in Melbourne.
Navigating neuro fatigue and noise cancellation technology
Bill Gasiamis 40:24
It was a Saturday afternoon, and it was pumping those people everywhere, it was a beautiful day, and all the cafes were filled. Our business district is also very heavily residential. And we were, we had done a fair walk. So I said, so we were going to hit towards the car and I said to her I don’t think I can walk towards the car, I’m stuffed, let’s just go and find the closest spot to sit down and have a coffee.
Bill Gasiamis 40:24
And we sat down at this place, which is technically what we had been doing all day, just walking and sitting in places having a snack, a coffee, whatever. But I couldn’t get back to the car. And I said, well, let’s just go and sit somewhere we sat down. And I think we just sat there, we had one coffee, we dragged it out for about an hour as long as we could drag it out.
Bill Gasiamis 41:14
And then I kind of recharge my batteries. And then we walked to the car. And that’s me every day like, my day has to be strategic. I I’ve lost that ability to wake up in the morning, and just do all my things and not hit those walls that just turn up out of nowhere. And I’m 12 years, you know, 12 years out. So it’s a really interesting thing to observe how my day went yesterday was still a lovely day.
Bill Gasiamis 41:53
But my wife doesn’t see my deficits, rather, she doesn’t see my deficits either. And every once in a while, it catches her off guard because everything is normal. And I was freaking out because the music is different. She’s just going oh my god, you wait, what are we going to do? I’m like I don’t know we’ll get it. It’ll be fine. We’ll just get through it. So strange, though.
Kelly Tuttle 42:21
Yeah. So when I was researching for my book, what I learned is that a lot of cognitive fatigue, or neuro fatigue, that was neuro fatigue, what you’re having is related to the brain wanting to run efficiently. And so these researchers were looking, they were using MRI imaging. And then you know how, if you have a brand new car and it’s running, it runs efficiently.
Kelly Tuttle 42:50
And then if you compare it to an older car that wasn’t taken care of as maybe hasn’t had an oil lube and 50,000 miles or something you put the same amount of gas well the newer cars just going to use up less fuel to get to a to b whereas the older car the that has been taken care of uses up more fuel Well that’s the same thing with the brain, the brain likes to run efficiently when it has damages, broken connections, cell debris and needs to clean out.
Kelly Tuttle 43:27
If it’s spending energy on Neuroplasticity, building up those connections, then it has less energy for things like visual filters. That’s why the sounds of the light seem to be audio filters. Because it doesn’t have the energy to block that out like you and I were able to do before our brain injuries. And the other thing too is sometimes with a brain injury, the brain loses the ability to differentiate between sounds.
Kelly Tuttle 44:09
So you suffer from sound overload and it gives dual attention to all sounds from the music to the conversation you’re trying to hear to the baby crying across the restaurant and it’s just overwhelming whereas before your brain would be able to go want to listen to this conversation. We’re gonna dampen this background noise you don’t have that anymore.
Bill Gasiamis 44:36
I love how you described that it gives dual attention to both sounds.
Kelly Tuttle 44:44
Yes, and the way I survived that because I still have sound sensitivity is through noise-canceling technology. Yeah. And there their headphones and earbuds that you can put into your We’re cancel out that sound. And they’re so advanced, they can kit you can connect them to your smartphone and control the amount of sound coming in via the app.
Kelly Tuttle 45:15
And those have been lifesavers for me, with that device, I’m able to hear a conversation with a friend better in a love restaurant, or even on an airplane, they assist me in hearing conversations because it’s cutting back that you know, the engine noise.
Bill Gasiamis 45:36
Are they small in size, are they as big as the headphones that you’re wearing now?
Kelly Tuttle 45:41
You can get both, I do have some smaller ones, but I would love to pull them out. But then they’ll activate and get my fun times. But you could do the small ones and just slip those into your ears, you know what else you can do. If you are working in a loud environment and you need to focus, you can put on these earbuds in turn the noise canceling on.
Bill Gasiamis 46:43
So that’s all right.
Kelly Tuttle 46:45
My earbuds
Bill Gasiamis 46:47
They did do that they connected.
Kelly Tuttle 46:52
Yes. But let me see if I get my get my video back up. But you can wear the earbuds and the headphones on top. And this will increase the sound control around you and allow you to focus. Say, if you’re writing a report, and you’re in an open workspace or your student you’re studying, you know, in a study hall or outside instant noises are breaking your focus. These are great tools to save your life. And when you utilize them, you are allowing your brain to save energy to not have to spend on blocking out these external noises. And you’re able to use that energy instead to focus on what you need it to or the tasks that you’re working on.
Bill Gasiamis 47:51
I love what you’re saying there, I used to take headphones, like the ones that you’ve got on, I used to take them to work and just put them on without switching music or anything that was just to keep my head feeling a little less overstimulated. And then recently, I discovered there’s a brand of earplugs called loop earplugs.
Bill Gasiamis 48:16
I’m gonna have a link in the show notes that just the earplugs but they’re able to have three different settings and change the level of noise canceling that they do. And they’re designed so that you can go and play, listen to a concert, and have a certain level of cancellation.
Bill Gasiamis 48:37
And you can be in a crowd and you can be in all these places. So for anyone watching and listening, just go to the show notes and see those links. I think they’re cool because they’re little, they’re inconspicuous. They just look like you’ve got a normal Apple or whatever brand earpieces in. And that’s it. You’re good to go. I love it.
Kelly Tuttle 49:01
I have a set myself.
Bill Gasiamis 49:03
Yeah, that’s good. Hey, you wrote a book. What’s cool is that you and I, we’ve got a lot in common. It’s that, that it’s that even though you’ve got like a head, that’s a little bit messed up, you’re always about solving problems, you’re looking for solutions, you’re looking for ways to help other people and give people information and tools. And I’ve got this download on my website.
Bill Gasiamis 49:31
It’s called several questions to ask a doctor after your stroke. And it’s been around for ages. It might be a little bit out of date and might need a couple of updates. Nonetheless, it has questions that you can take, you can print off and you can take it to your doctor. And you can say, all right, when did the stroke happen? What does that part of the brain do? And so on and who else can I see what other doctors do I need to visit etc?
Bill Gasiamis 49:58
People contact me and let me know how life-changing having those seven questions, even though they might not all be the correct ones for them, because it starts a conversation that they never could start before and then that usually sits them down the trajectory of knowing to ask certain people certain questions.
The Book: After The Crash By Kelly Tuttle

Bill Gasiamis 50:24
And you’ve got a similar download on your website. We’ll talk about that in a little bit. But I do want to talk about the book After The Crash. Tell me a little bit about it. How did you get to the point of deciding that you should write a book about this situation, and what is the book, mentor accomplish?
Kelly Tuttle 50:46
So I didn’t come up with the idea on my own, I had another great friend recommend that I write the book. And so I just put it on the little to-do list and then five, at my fifth anniversary of my car crash, I decided to start writing the book. And the reason why I wanted to write the book was, my goal was to get back to work as soon as I could, because I was the single-income earner for my family, and I earned the health care benefits and so forth. And so I needed to get back to work.
Kelly Tuttle 51:21
And I wanted to get back to work. And I remember the first couple of weeks, like before, I was supposed to go back to work freaking out, like I don’t know, what I need to make my return to work successful. I don’t know how I’m gonna handle this, I don’t know how this is gonna go. And I had some great books on how to recover from a brain injury that I learned from but they weren’t niched down to returning to work what you need to return to work. So that was my goal, I wanted to fill that niche.
Kelly Tuttle 51:59
My book would focus on supporting you in returning to work or studying while your brain healed. And so it talks about brain injury symptoms, common brain injury symptoms, and the specialists who can help you with it. Because I also didn’t want to say, yeah, you can have dizziness after a brain injury, but not say, what to do next. Some books don’t say what to do next.
Kelly Tuttle 52:30
And I wanted to answer that question. And so I do have those answered in my book. And then I share all the strategies and compensatory tools that I had learned to support my successful return to work. And that’s the main part of the book. Then at the end of the book, I had five strategies to get back to life and to support my brain’s healing.
Kelly Tuttle 53:03
It talks about mindfulness, nutrition, sleep exercise, here in America, the American Disability Act, and we Family Medical Leave Act that helps protect your job when you take time off work to heal from an injury or a serious illness. And I also have ways to ask for accommodations for your disability from your employer, and then I talked about finances, which is important.
Kelly Tuttle 53:42
If your finances aren’t healthy, then you’re not going to feel healthy, or you’re going to have a harder time getting better if you’re stressed out about paying the bills. And then I talked about at the end, about letting go of the old things that you were in the past, before your injury, and how to embrace the new, the new you and your new brain.
Bill Gasiamis 54:08
That sounds amazing. Thought of things that a lot of other books have been thought of. And I think it’s going to be helpful for people to be able to access a book that has some information, again, to start thinking about solving problems that seem unsolvable. Especially when your brain is not working properly, and you’re trying to get through to the next stage.
Bill Gasiamis 54:30
This has been a great book for caregivers as well, family members, loved ones, partners, and all sorts of people will be able to benefit from that because if like you and I our partners are taking up the slack, then they might benefit from knowing which direction to hit. And that might make it easier for everybody, including family. So that’s cool. How long did it take you to write?
Kelly Tuttle 55:07
I started in 2020. It was published at the beginning of 2023. So I’d say about two and a half years to get it written. And I wrote it along with a self-publishing company. So they had writing coaches. And so, which is great, because I’m a nurse practitioner, I don’t know how to write. I didn’t know anything about marketing, or social media accounts, those kinds of things. And so they helped me out with that. And I think that helped with my brain healing, too, with all that additional learning.
Bill Gasiamis 55:51
Yeah, it does help for sure. I wrote my book took four years from concept to research to writing, it was the hardest thing I ever had to do. I mean, I don’t have my ability to process words and all that kind of stuff fatigues me, the usual stuff, you know, I’ve got to find ways to get through that while I’m in the zone in the writing zone, but then I get fatigued. It was a real challenge.
Bill Gasiamis 56:19
And I had a book coach as well because there was no way I was going to be able to do this somewhere, nobody would have said to me, how’s the book coming along? I would have said I, it’s not, you know, forget about it. I’m not doing it anymore. Yeah, I’m so glad I did it, though, your book has very, a few things that my book has in it. So three of those topics, nutrition, sleep, and exercise, are in my book as well.
Bill Gasiamis 56:45
And What’s cool is, that I wrote the book because the chapters were not chapters that I thought of, I’ve interviewed 10 stroke survivors, and they’ve told me that stroke was the best thing that happened to them. And without crying out without leading them down the path, to tell them why I said that. I got out of them, these 10 chapters. And then when I interviewed the next person, they had they tended to the same 10 things, and the next person, the same 10 things.
Bill Gasiamis 57:17
And what they were, they seem to be universal things that we all need to attend to, to start the healing journey and to sort of give it legs so to speak, so that you start to improve things marginally, on all these areas, and then they all add up. And then there’s a massive difference in improving. And I had this little bit of a aha moment, it was like, Well, okay, that’s what everyone needs to know about.
Bill Gasiamis 57:49
The only problem is that everyone else’s book says the same thing. Everyone has to go back and attend to all these things. And I thought, Oh, my God, I’ve just written another bloody book that everyone else has written the same book. But God’s sake, what’s the point of that? But what is cool is that it’s not the same book, it’s a completely different book like yours, your spin on nutrition, your spin on sleep, and your spin on exercise, will be completely different from mine, but they all attend to healing the brain, they all attend to making the brain stronger and better.
Bill Gasiamis 58:26
And that’s what’s cool about it is that it doesn’t matter where we come from those core 10 things that need to be attended to are universal, and getting different people’s perspectives on how to go about healing your brain. Even though they say the same, they have the same title, for example, at the beginning of the chapter, is important to get a lot of different versions of how to sleep at a lot of different versions that eat better the one so that you can find the one that works for you, and you can get the result that you need, right.
Bill Gasiamis 59:03
And I couldn’t get that result from reading somebody else’s book, for example, but I might get that result from you. And just picking up one thing out of a book that you didn’t know could be the game changer. It could be the one thing that then propels the recovery in the right direction. Now that it’s out, what’s the feedback been like? How do people respond to your book?
Kelly Tuttle 59:35
I’m very well. I’ve gotten several five-star reviews. And I’ve had some people invest a lot of time in to their reviews, and their reviews tell me that my book has reached the goal of my intention. That it’s a you know, they talk about how it’s a companion, because it understands what they’re going through.
Kelly Tuttle 1:00:05
And they talk about some of the things that I had put in my tools and strategies they hadn’t realized or thought about, and now are going to use or wish they had known back when they were dealing with whatever the issue was. They say that it’s easy to read.
Different learning curves especially after a TBI
Kelly Tuttle 1:00:27
And that was my goal, I didn’t want to talk a whole lot about my story, even though sharing your story is important. I wanted to get to the point, you needed to, if you have this, do this, and this, you know, if Yeah, I don’t want to waste anybody’s energy, their brain energy, you know, reading too much of a fluffy story, because I know reading time is limited when you have a brain injury.
Kelly Tuttle 1:00:55
And, that’s why my book is also on Audible, I read it for Audible because I know how difficult it is to read. I’m a big audible user myself and learned that I was able to learn information from listening to books. Before my brain injury, I was very much the person who had to read it.
Kelly Tuttle 1:01:18
I was not an audible, an auditory learner. However, after my head injury, I became an odd auditory learner. And so that was important to me to have both versions of the book available. Because, yeah, in the beginning, that was one of the things I did notice was my ability to read hours on in was diminished down to 5 minutes, 5-10 minutes early in my recovery.
Bill Gasiamis 1:01:47
I always struggled to read for hours on end, I think I had some kind of a, you know, I had a dislike of reading, not because I didn’t enjoy learning from reading, but because books used to put me to sleep literally. And I struggled at school, I struggled ever, I never read a book, I think the first book I read was in my 20s.
Bill Gasiamis 1:02:12
And when we had a book to read for English class, I would make sure the book had a movie attached to it. And we read, we were supposed to read the book, The Killing Fields when I was in school. And it was a book about the Holocaust that happened in Cambodia during the ’70s Khmer Rouge regime, right?
Bill Gasiamis 1:02:38
And I was like, Oh, my God, I’m not reading this book, there’s no chance and there happens to be a movie that came out and I went and read and watched the movie. And then I wrote my paper based on the movie. And I got high marks, and my friends were all annoyed and upset.
Bill Gasiamis 1:02:52
And I’m like, guys, like, it’s the same thing. Like, once the movie, it’s telling the story, reinterpreted you know, get over it, you guys read the book and took ages. I don’t know how long it took you to read the book, but I saw the movie in two hours. And, and that was it, I was done. And I knew from back then that I had a different way of grasping information than learning.
Bill Gasiamis 1:03:14
But of course, back then there wasn’t a lot of stuff available on Audible, there wasn’t an audible, you know, you had to buy cassette tapes, and CDs and all that type of stuff. And I remember the first massive amount of listening that I did, somebody told me to listen to the Tony Robbins cassette series, Tony Robbins has about 7 billion tapes that he made available in one of his programs, I think, Unleash the Power Within.
Bill Gasiamis 1:03:46
And man, I was able to put that in the car while I was driving to work and then just listen to that. And then flip the tape over and then go on and keep listening to that. And I got through his 30 or 40 cassette tapes, quicker than I ever would have got through, say 30 chapters of a book or 30 volumes of a book or something like that. And it was a game changer because information was now able to enter my mind the way that it served me. And I didn’t know that I had this other method of learning.
Bill Gasiamis 1:04:21
So for people who are listening, who want to read and can’t read a book, and perhaps might want to try listening, one of the things that I do now is I buy the book and the audible and I read while the person is narrating the book, and that’s an even better experience because there’s no I don’t have to get tired doing any of it.
Bill Gasiamis 1:04:50
My eyes are just scanning the words so I know what I’m up to. If I need to highlight something in my highlighter, and then I’m listening to the person tell the story it’s just two ways of joining the dots and embedding that information, a completely different experience to just reading or just listening. It’s amazing.
Kelly Tuttle 1:05:09
That is an amazing combo, I would never think to put those two together, I’m going to keep that I’m gonna steal that from you, and share it.
Bill Gasiamis 1:05:17
Yeah, give it a try, Kelly, because it’s just so gentle and easy to do. And you don’t have to think. Because the eyes and the ears are connecting the dots. And it’s just embedding it far better. So how, how thick is the book? Do you have a copy there? Can you hold it up to the camera? How many pages is
Kelly Tuttle 1:05:48
Is it not that many? Over 200
Bill Gasiamis 1:05:57
Yeah, perfect stroke survivors love that stuff. Yeah, brilliant. I love I’ve got the filter on all. I’ll make sure there’s There you go. Make sure there’s a copy of that on the show notes as well.
Kelly Tuttle 1:06:14
But it’s really Yeah, it’s really easy to read. The other thing too is at the end of each chapter, I have like a list of recaps. So if you forget or you just want to quickly look back on something, you can go to that list and it’ll remind you, and yeah, write in it, highlight it. Yeah, you don’t have to read it front to back. You can pick the chapter like I have. I think I have sound sensitivity. Just go straight to that. And get in learning about that.
The hardest thing about TBI
Bill Gasiamis 1:06:46
Yeah. Excellent. You know, with my stroke survivor guests, I asked them these three questions at the end of the podcast episode. So now I’m going to ask you, but it’s relevant. So what’s the hardest thing about traumatic brain injury for you?
Kelly Tuttle 1:07:06
Or me, it’s the fatigue. Yeah, the chronic fatigue, you go to sleep. And no matter how much sleep you get, you wake up. You don’t wake up refreshed. I remember waking up refreshed and bouncing out of bed. I don’t do that anymore. I haven’t since the car accident. And here I am eight years later and still don’t do that. So that is the hard part. Is living with fatigue.
What has TBI taught Kelly Tuttle
Bill Gasiamis 1:07:37
What has TBI taught you?
Kelly Tuttle 1:07:42
Oh, wow. It has taught me to have patience. And it has made me think even more empathetic and compassionate and understanding of others around me. And it has made me more grounded in the present moment. And I spend a lot less time in the past and the future now.
Bill Gasiamis 1:08:15
Has it made you a better nurse?
Kelly Tuttle 1:08:18
Well, you know, before my head injury, I was a cardiology nurse practitioner, I help people with our hearts. After my head injury after two years of learning about the brain, I was able to beg and plead myself into a trainee position as a neurology nurse practitioner. And I do feel it has made me a better provider.
Kelly Tuttle 1:08:45
Because I’ve been there and done that I have the T-shirt. I can hear what my patients are saying and put words to what they’re not getting out. You know, and they’re like, oh, yeah, that’s what I meant. You know, so I’m able to take these big kind of general struggles and say, Oh, you’re having difficulty with hearings because you’re experiencing hearing overload, and then I explain it and they’re like, Yes, that’s it. And so yeah, I feel like I’m a better ambassador between the patient and the care they need.
Bill Gasiamis 1:09:27
Yeah, you’re a translator as well. You’re able to decipher what they mean and put it into words.
Kelly Tuttle 1:09:34
Yes.
A piece of advice from Kelly Tuttle
Bill Gasiamis 1:09:37
I love that. I hate that you had to go through what you had to go through to get there. But I love that you can do that. Other people are listening, that have all had a traumatic brain injury, all my guests and they’ll be someone that very early stage of their recovery, and they get to hear from me and you who are you’re eight years out I’m 12 years out and they’re kind of like, oh my God, like, will I ever be like that? What would you like to tell people who are just starting their journey or even a few years in? What kind of advice information encouragement would you like to offer,
Kelly Tuttle 1:10:18
That there is hope that you will get better. The thing is, is that every brain injury is as different as our personalities. And every road to recovery, therefore, is going to be different. And some of those roads are going to be shorter, and some of them are going to be a long highway. And you just don’t know until you get there. What you need to do is just be in the moment that you’re at, and do the best you can to support your brain healing.
Kelly Tuttle 1:10:51
You will have to learn over time, how to push yourself to help your brain grow stronger, but not push it so hard that you end up what I call regressing in your recovery. And that’s when all your past symptoms are unmasked, and you’re exhausted and you’re in bed for days trying to recoup, get your energy back. So it’s a lot of push and pull. The recovery isn’t a linear line. It’s gonna be like a dance.
Bill Gasiamis 1:11:29
It sure is. Hey, Kelly, thank you so much for joining me on the podcast. I appreciate it.
Kelly Tuttle 1:11:37
Well, thank you for having me. I enjoyed our discussion.
Bill Gasiamis 1:11:41
Well, thanks again for joining us on today’s episode. I hope you enjoyed my conversation with Kelly Tuttle to get a copy of my book about stroke recovery, go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:12:06
Thank you to all those people who have already left a review about the podcast on iTunes or Spotify, it means the world to me. And it makes a massive difference to how people who are looking for this type of content combine it. If you haven’t left a review and you would like to leave one.
Bill Gasiamis 1:12:26
You can do that by going to your Spotify, or your iTunes app, and going in leaving a five-star review and a few words about what the show means to you. If you’re watching on YouTube, comment below the video now this is starting to take off people are commenting, and we’re creating conversations on the different YouTube videos. So it’s great to see I love people who are interacting with my video and I also respond to all the messages.
Bill Gasiamis 1:12:54
Also, if you’re watching on YouTube, like the episode, and if you want to get notifications of future episodes, obviously subscribe to the show. Hit the notifications bell. If you are a stroke survivor with a story to share about your experience. Come and join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:13:14
All you need to do is be a stroke survivor who wants to share their story in the hope that it will help somebody else who’s going through something similar to you. If you have a commercial product that you would like to promote that is related to supporting stroke survivors.
Bill Gasiamis 1:13:31
Come and join me on a sponsored episode of the show. Just go to recoveryafterstroke.com/contact and fill out the form briefly explaining which category you belong to. And I will respond with more details about how we can connect via Zoom. Thank you once again for being here and listening. I appreciate you see you on the next episode.
Intro 1:13:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas.
Intro 1:14:24
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Intro 1:14:48
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Intro 1:15:13
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35 min
April 01, 2024Cerebrovascular Accident (CVA) Recovery – Jennifer Hale
Understanding Cerebrovascular Accidents
Introduction
In this comprehensive guide, we delve into the intricate details of cerebrovascular accidents (CVAs), commonly known as strokes. As a leading authority in healthcare, we provide you with expert insights into the causes, symptoms, diagnosis, treatment, and prevention of this critical medical condition.
What is a Cerebrovascular Accident?
A cerebrovascular accident, or stroke, occurs when the blood supply to the brain is interrupted or reduced, leading to damage or death of brain cells. This disruption can be caused by a blockage in an artery (ischemic stroke) or the rupture of a blood vessel (hemorrhagic stroke).
Types of Strokes
Ischemic Stroke: This type of stroke occurs when a blood clot obstructs a blood vessel supplying blood to the brain. It accounts for approximately 87% of all strokes.
Hemorrhagic Stroke: This occurs when a weakened blood vessel ruptures and bleeds into the surrounding brain tissue.
Risk Factors
Modifiable Risk Factors
Hypertension: High blood pressure significantly increases the risk of stroke.
Smoking: Tobacco use damages blood vessels and contributes to the formation of blood clots.
Obesity: Excess weight can lead to other risk factors such as diabetes and hypertension.
Non-Modifiable Risk Factors
Age: The risk of stroke increases with age, particularly after 55.
Family History: A family history of stroke or certain genetic conditions can elevate risk.
Symptoms
The symptoms of a stroke can vary depending on the type and severity but may include:
Sudden weakness or numbness of the face, arm, or leg, typically on one side of the body.
Difficulty speaking or understanding speech.
Sudden confusion or trouble with vision.
Diagnosis
Physical Examination
A healthcare provider will conduct a thorough physical examination, assessing neurological function and vital signs.
Imaging Tests
CT Scan: This can quickly identify whether the stroke is ischemic or hemorrhagic.
MRI: Provides detailed images of the brain to detect any abnormalities.
Treatment
Ischemic Stroke
Thrombolytic Therapy: Administering clot-busting drugs such as tissue plasminogen activator (tPA) can dissolve the clot and restore blood flow.
Mechanical Thrombectomy: In some cases, a catheter-based procedure may be performed to remove the clot.
Hemorrhagic Stroke
Surgery: Depending on the severity, surgical interventions such as clipping or coiling may be necessary to repair the ruptured blood vessel.
Medication: Medications to reduce blood pressure and prevent further bleeding may be prescribed.
Rehabilitation
Rehabilitation plays a crucial role in helping stroke survivors regain independence and improve their quality of life. It may include physical therapy, occupational therapy, speech therapy, and counseling.
Prevention
Lifestyle Modifications
Healthy Diet: Consuming a balanced diet rich in fruits, vegetables, and whole grains can help control blood pressure and cholesterol levels.
Regular Exercise: Engaging in physical activity for at least 30 minutes most days of the week can lower stroke risk.
Smoking Cessation: Quitting smoking reduces the risk of stroke and other cardiovascular diseases.
Medications
Anticoagulants: These medications help prevent blood clots from forming.
Antiplatelet Agents: Drugs such as aspirin can reduce the risk of clot formation.
Conclusion
In conclusion, understanding cerebrovascular accidents is paramount in preventing and managing this life-threatening condition. By recognizing the risk factors, symptoms, and treatment options, individuals can take proactive steps to safeguard their brain health and reduce the likelihood of experiencing a stroke.
Cerebrovascular Accident (CVA) Recovery: Full Interview with Jennifer Hale
Jenifer Hale experienced a cerebrovascular accident (CVA) on the day of her 60th birthday anniversary.
Instagram
Highlights:
00:00 Introduction
01:58 Having a cerebrovascular accident on my 60th birthday
10:04 Dealing with sensory overload
13:15 Life before the cerebrovascular accident
19:40 Post-stroke deficits and improvements
30:39 Communication and attention span
42:57 The power of positivity
50:13 The hardest thing about the stroke
56:05 A message to other stroke survivors
Transcript:
Introduction

Bill Gasiamis 0:00
Hello, everybody, this is episode 298 my guest today is Jennifer Hale, who turned 60 years old on the day of her cerebral vascular accident also known as a CVA.
Bill Gasiamis 0:14
A CVA is described as a condition where a portion of the brain experiences a lack of blood flow, resulting in damage to brain tissue. This occurrence is typically instigated by either blood clots or ruptured blood vessels within the brain.
Bill Gasiamis 0:30
Symptoms associated with cerebrovascular accidents encompass sensations of dizziness, numbness, or weakness localized to one side of the body, and difficulties in speech and writing, or language comprehension.
Bill Gasiamis 0:45
Now, just before we get started with the interview, let me tell you a little bit about my book for a minute. It’s called the unexpected way that a stroke became the best thing that happened, and it lists 10 tools for recovery and personal transformation.
Bill Gasiamis 1:00
It also tells the story of 10 stroke survivors and the steps they took that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.
Bill Gasiamis 1:19
In the book, there are chapters on nutrition, sleep exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. Grab a copy from Amazon by typing in my name Bill Gasiamis into the search bar. Jennifer Hale, welcome to the podcast.
Jennifer Hale 1:43
Hi, how are you, Bill?
Bill Gasiamis 1:46
I’m well thank you so much for being here. I appreciate it.
Jennifer Hale 1:51
I appreciate you having me.
Bill Gasiamis 1:54
Tell me a little bit about what happened to you.
Having a cerebrovascular accident on 60th birthday
Jennifer Hale 1:58
Okay, um It happened on March the sixth, which was my 60th birthday. I was fine. You know, I was getting birthday calls that morning. By 10 o’clock, my daughter rushed me to emergency because I couldn’t keep my balance, and I was dizzy, and my face kept on slacking.
Jennifer Hale 2:32
But I didn’t think anything serious until we got there, of course. So I ended up having I can’t pronounce it. It was a small blood clot in the left side of my brain. it starts with an I can’t pronounce it.
Bill Gasiamis 2:53
Acute ischemic CVA is what you’ve written here.
Jennifer Hale 2:59
Yes. That’s what it was.
Bill Gasiamis 3:05
It was your 60th birthday. Now, it’s March right now. So how many years ago was that?
Jennifer Hale 3:13
That was the last year 2023, so I’ll be 61 in five more days. Yeah. And this is a kickoff celebration for me.
Bill Gasiamis 3:27
Okay. Are you somebody who has a thing with anniversaries some stroke survivors who, when the anniversary of the stroke is coming up, start to get nervous or start to think about it negatively?
Bill Gasiamis 3:47
But there are a lot of stroke survivors who don’t have a problem with anniversaries at all. They don’t believe that the anniversary means anything other than to mark 12 months. How do you feel about the anniversary that’s coming up? Because it’s supposed to be a celebration because it’s your birthday.
Jennifer Hale 4:05
Yes, it was all sweet. Last year I had maybe six to 10 doctors in the room. Watching me, see what I was doing. And every time they say what’s your name? I tell them my name, what’s your birthday? March 6 1963 and they look. Oh no, that’s today.
Jennifer Hale 4:28
I said no, today’s my birthday we’re gonna celebrate. Just wish me a happy birthday. And I’ll still celebrate. I didn’t feel like I guess to make a long story short, I didn’t want the pity party. I didn’t want anybody feeling sorry for me because I wasn’t feeling sorry for myself.
Jennifer Hale 4:51
I didn’t want anybody. Just say happy birthday, join my party. If you didn’t want to stay you’re welcome to leave but we’re not having a pity party. I still feel that way.
Bill Gasiamis 5:07
Fantastic. It’s a great way to think about it and to go about how to deal with something serious that’s happening on a particular date doesn’t matter which day it is. Whether it was your birthday or not, really does it?
Jennifer Hale 5:20
No, it doesn’t. And then, you know, by being the 60th, that’s a milestone. So I said, I will celebrate and just be breathing still on my 60th birthday. I didn’t have sunrise at 3 63 and sundown at 3 6 2023. No. I’m still here.
Bill Gasiamis 5:52
The way I see it, was 37, when all of the stuff that happened to me happened. And I’m just glad that I’m getting to 50. This year is going to be my 50th. And it’s cool. It’s cool to be here.
Bill Gasiamis 6:09
Because 30 years earlier, I don’t know if I would have got there. That’s the thing. It’s a real gift to have another 13 years. I’m not sure how many more I have. But these 13 have been lovely to have. Some great things have happened, even though there have been some terrible things happened in life just as in everyone’s life. It’s been good to be around.
Jennifer Hale 6:37
Yes well, I appreciate you still being here. Because when I got home, my daughter gave me your information, to get a little bit more of what’s going on with me. So I’ve been watching you for over a year now. And every episode that I catch is just so inspiring. So I’m glad you’re still here too.
Bill Gasiamis 7:06
That’s awesome. That’s lovely. I appreciate that. Your daughter and was that your son that we were chatting with earlier?
Jennifer Hale 7:14
My son-in-law.
Bill Gasiamis 7:18
Tell me about your daughter and your family. How big is the family? Who’s around? What was that like?
Jennifer Hale 7:27
Well, I’m living with my oldest daughter and my son-in-law. And I have three grandchildren here, but I’m a grandmother of six grandchildren. And I have three kids, two girls, and a boy. And they are all in their 40s.
Jennifer Hale 7:47
So has this been a learning experience for the whole family? But I try to keep them informed on whatever I learn about myself, I try to inform them because they’re not used to me in this way.
Jennifer Hale 8:04
But I tell them, this is the new me. And we all just have to adapt to it because I’m surprised just like you. So I’ll just keep everybody informed. Even the kids keeping them informed of what’s going on with me. Yeah, so we’re just in pretty good.
Bill Gasiamis 8:28
And your children? Are they all living near you, the others? I know you’re living with your daughter, but are the others living near you?
Jennifer Hale 8:36
I have a daughter in South Carolina, I have a son in North Carolina. And we’re in Alabama.
Bill Gasiamis 8:46
Everyone’s all over the place. That’s okay. Do you guys get to meet up and catch up and have family events at Christmas or the big holidays?
Intro 9:01
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse?
Intro 9:18
Doctors will explain things. But, if 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. 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.
Intro 9:40
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.
Dealing with sensory overload after the Cerebrovascular Accident
Jennifer Hale 10:04
Well, this year, I kind of opted out of everything because I couldn’t, I’m still sensitive to noise and crowds, and only can take so much light, then I have to have enough light, like, certain times of the day, I need more light then when I’m kind of relaxing, I don’t need that much light.
Jennifer Hale 10:31
But it just depends on my body. So I just follow whatever my body says, and do I respect my body? So I didn’t have any celebrations, which was okay, because I needed to rest.
Bill Gasiamis 10:45
Yeah, I remember opting out of a lot of social events as well. And then, at some stage, feeling like I was missing out, so I would go along for as long as I could. And then sometimes sleep on the bed or the couch. And sometimes just leave early, just go to that place and set the expectation that we’re going to come for a few hours, we’re going to see everybody, and then we’re going to leave and get home early.
Bill Gasiamis 11:13
And that started to get better. After two years, after three years, after four years, everything started to settle down. And I was able to be at an event for as long as I felt like it or as long as I wanted. And fatigue wasn’t the thing that was causing me to not want to be able to go home.
Bill Gasiamis 11:32
And of course, noise sensitivity was an issue. And all the overstimulation from other people’s laughing and chatting and having a great time. That was all a bit too much. And I think it’s the wise decision to say, Hey, you guys have a good time. But I’m gonna rest I’m gonna sit this one out. And then I might see you at the next one.
Jennifer Hale 11:57
Yeah, I saw my grandson, he was six at the time, and he was playing football during the summer. And his sisters were the cheerleaders in their seven, eight, ten. And I missed the whole game, except the last one, I forced myself to go.
Jennifer Hale 12:19
So I couldn’t be sad I went to one. But I had to put earplugs in my ear. And at the time, and get on a cane. And the whole night, when he got to watch I had to go, but I did get to see one of their games.
Bill Gasiamis 12:39
It sounds like it was worth the struggle worth the effort. Yeah, the children would love to have you there. Everyone would have loved to see you out and about. And the good thing about it is you took some precautions, you put the earplugs in, and then you used your cane you did whatever you had to do to get there. And then when it was enough, it was enough.
Jennifer Hale 13:06
It was enough. Yeah, come home. Put the cane to the side and lay down.
Life before the cerebrovascular accident
Bill Gasiamis 13:15
And rest. Were you actively employed when you had your stroke? What were you doing on a day-to-day basis?
Jennifer Hale 13:25
At the time, I was working a part-time job. Going to school full-time online. I was four times, which I still am. I was blessed enough with instructors. Let me they extended my time when I was in rehab to do my work online. And so when they did that, on my left side is my side that went out.
Jennifer Hale 13:57
So I just have my right side. And I was just doing what I could until and I made my dates. And I made my scores my points. And I’m back in school. Back in school now. Last year had a break. Summer break. And I just recently started back eight weeks ago.
Bill Gasiamis 14:22
What are you studying?
Jennifer Hale 14:23
I’m studying Christian counseling.
Bill Gasiamis 14:30
Wow. So how much longer have you got until that’s complete?
Jennifer Hale 14:36
Oh, wow. I just started when all this happened. So it’ll be a while. Maybe another three and a half years? If not four because I’m going part-time now. I’m not doing full-time.
Bill Gasiamis 14:55
Yep. And will that allow you to do what when you’re qualified, what is the hope? What kind of role will you be able to participate in?
Jennifer Hale 15:06
I can, counsel in church, you know, or I can have my place or office in counsel. You know, my goal, what I really would like to do is counsel children and be a part of the younger kids, and growing up and helping them through their decisions and all that kind of stuff. But yeah, I can counsel at a time when I get done.
Bill Gasiamis 15:45
Are you doing Christian counseling? Because you were very active in your local church?
Jennifer Hale 15:53
Well, the church that I attend now is my daughter’s last church. I just got in. I’m not involved still. Once again, it’s hyper, and before I decided on Christian counseling years ago, I used to be very active in a church. And I used to do counseling in the church, but it wasn’t what I expected.
Jennifer Hale 16:24
How can I explain, it was more. It wasn’t enough for me, it wasn’t enough. I didn’t feel like it was a warding enough to the people I was trying to help. So I wanted to get more information on how to use the skills to help people instead of just letting a person talk, talk to talk, and never getting to a solution. So I wanted to learn the skills and what to use and what to say, to help a person get to the bottom of the situation. Yeah, I don’t know if that makes sense.
Bill Gasiamis 17:07
It sounds like you’re doing your best to help people, you felt like perhaps you could help them but more and better, and you decided to get qualified in the particular field so that you could offer a better thinking about the people you are helping you want it to make sure that you can support them to get an outcome rather than just a tendon and, and perhaps not get to an endpoint.
Jennifer Hale 17:37
Right, exactly. That’s perfectly the endpoint. Because we can go around the same circle and never get to the bottom of it. And that’s, that’s not my goal. I wanted to make sure I was helping somebody.
Bill Gasiamis 17:51
So what happened at the time of the stroke, you experienced the symptoms, and you went to the hospital? Did they check you out? How long did you stay in hospital? And then how long were you in rehabilitation?
Jennifer Hale 18:11
I stayed in the hospital, I think, I want to say 10 days, if I remember straight, and I had a little bit of rehab there. They walked me around. And then I went to rehab. And I was in inpatient rehab for almost three months, two months after.
Jennifer Hale 18:40
Then I was on outpatient, until another month or two, and then insurance, no more. So, that didn’t stop me what I did was I would get on YouTube and look for exercises to help and I would exercise and then I went to the why and went the pool and worked on my legs and my arms and anything that will give me movement I get it.
Jennifer Hale 19:12
To this day. I don’t have insurance at this time because was between moving from one state to another and still trying to get my disability to get this. It’s kind of hard to get it off my neck. So the only thing I do now is just make sure I eat right, exercise, and do everything I can to keep my body in shape.
Post cerebrovascular accident deficits and improvements
Bill Gasiamis 19:41
They are good things to do. So you were in therapy until the insurance ran out. And then you went home when you went home. What did you go home with what kind of challenges were you experiencing?
Jennifer Hale 19:59
My left leg I would. So I had to tell my brain to pick up my leg when I was walking I named my left arm I named it baby. So baby was pinned to my side, she was not moving at all. And all the time she would move is when I yawn, and she would go straight up but then she’d come down.
Jennifer Hale 20:28
But after the rehab, I didn’t have any movement. My movement didn’t start until I joined the why starts when we’re not swimming, or moving in the pool. And then one day, my daughter was getting ready to go to work. Now I already knew I could lift my arm and I told her by and she was like, oh my God, it’s moving so it’s almost 90% now I just can’t move it on top of my head.
Jennifer Hale 21:01
My leg is strong. It doesn’t drag wherever now, I didn’t have to tell it. You know? Yeah, get going. And the only thing now, of course, is this one. I can’t pronounce it, you know, when you try to talk is a fish. phage. And now and then I lose track of thinking, you know, I can’t think too fast. Because everything just stops. Fifth, the outside appearance just coming along pretty well. But now it’s more inside.
Bill Gasiamis 21:46
The healing on the inside of the brain.
Jennifer Hale 21:49
The brain and my eyes.
Bill Gasiamis 21:53
How are your eyes affected?
Jennifer Hale 21:56
Blurry it’s like dusty. And they said the blood clot was small and wasn’t enough for them to operate was small. So okay. But when I was in the rehab, inpatient rehab, I watched everybody that was in there with me. And I thank God that it could have been worse. What is just amazing on what a stroke can do to a body. It’s just amazing. And you see the different effects of it?
Bill Gasiamis 22:42
Would you say you’re different? You say that? Your speech? If you think too quickly, everything stops. So is your speech affected by that as well? Are you talking at a slower pace than perhaps you would have before?
Jennifer Hale 22:58
Yes, yes, real slow. Sometimes I have to think about what I’m gonna say before I say else it just sounds like I’m reading.
Bill Gasiamis 23:11
So now the thinking has to happen. And then once you’ve gathered the thought, you can say it before you just used to talk. And he used to come out and there was no thinking about what you had to say.
Jennifer Hale 23:26
I had to think about what I was saying now.
Bill Gasiamis 23:31
Why do you believe that the therapy didn’t start for your left side and that you didn’t get much stronger while you were in rehab? And then you started to see improvements when you got home. Can you do you have a theory on that? Did you do something different when you came home?
Jennifer Hale 23:52
To be honest, I think the difference was once I moved to Alabama where I’m now they just completely health everything Spanish, and smoothies, and a lot of berries so the household is full of nothing but healthy snacks, and well healthy food period, and how you said turmeric.
Jennifer Hale 24:22
Turmeric,
Jennifer Hale 24:23
Turmeric. I think that that and walnuts did it. Does that that’s all I eat? All of a sudden seemed like everything just started. No relaxing. And then being in the swimming pool helped because my muscles weren’t filling in. So I can move and still have resistance and it wasn’t hurt.
Bill Gasiamis 24:58
I remember the swimming pool was really lovely to be in after the stroke, even though I couldn’t walk and move my left side either. Of course, I was supported by the therapists and with those flotation devices, so I was feeling safe being in there, but I was able to exert myself as much as possible and get that resistance from the water, and then also not be afraid that I was going to fall over and hurt myself.
Jennifer Hale 25:36
Right? Yeah, I think that was it. Because you can’t if you had three feet not going, you can’t go too far. It was good to have that resistance. That’s the part that I like, no, not moving around, and no nothing.
Bill Gasiamis 25:59
Was it difficult for the children to see you in the way that they saw you? How did they support you? And they all live in different places? And it sounds like you were living somewhere else at that time as well. Where were you living?
Jennifer Hale 26:16
I was living with my daughter in South Carolina. Well, let me back up because I know I saw, um, right before the pandemic 2019. I flew, and I stayed in California. But I flew to South Carolina to view my son and his birthday, and then everything shut down. So that’s what made me stay here. Because I couldn’t, I couldn’t go home. I said, Well, my kids and grandkids are here.
Jennifer Hale 26:49
So my eyes weren’t hanging around. So that’s how it truly happened. And then the daughter I was standing in South Carolina, I was living with her. And it was just a blessing because she worked the night shift. And she was asleep when I was going through the dizzy spells and on. And I tip I called her She didn’t ask her, and I texted her. And I said, Oh when I was just getting ready to take a nap.
Jennifer Hale 27:20
Don’t take a nap. Stay up. So I stayed up. My daughter ran up the stairs and she said, Mom, you do like you get ready to mirror looking at myself and she’s like, having a stroke. And I said, Oh, okay, and I was real calm. She said this go and I said, Okay, wait, let me let me call my hair. No, you don’t have time to comb your hair. You got to go. You don’t know who we’re gonna see when I get there. I gotta go. It’s my birthday. I gotta make sure I’m good. So she got me there. Thank you, Lord. Everything was okay.
Bill Gasiamis 28:06
And then your other two children were not near you. They get the news. How did they respond?
Jennifer Hale 28:13
They were at a hospital. My son at the time. He couldn’t make it. But he kept calling but my daughter. They came? Yeah, they were at the hospital. My sisters and fathers flew out from California. So I had a lot of support in the beginning.
Bill Gasiamis 28:35
You got one of those big families that when something goes wrong, everyone just turns up.
Jennifer Hale 28:42
At the rehab, they say you like a movie star around here? I said that’s my family they are shy about nothing.
Bill Gasiamis 28:58
It sounds like you’re the matriarch as well, it sounds like you’re the head of the family. And a lot of things happen. Because people look up to you and they respect you. And probably your attitude. It sounds like has always been your attitude. I don’t think that this is new for you this way, about solving problems and overcoming challenges. I don’t feel like you just started this has that always been you?
Jennifer Hale 29:23
It’s funny that you say that because I’m the oldest of eight and I’m okay, we’re so close in age that I never felt like I was the oldest because it was that close in age. I will always be there to support whatever they need or whatever they need from me. So and then yeah, they asked you a question.
Jennifer Hale 29:51
Negativity was never my thing. If you didn’t have anything positive to say as they used to say you can’t say anything nice. Don’t say anything at all. So yeah, it’s me, I believe there is too much in life to be disappointed about things. That’s not gonna matter.
Jennifer Hale 30:11
A minute from now, you know, if you can make the best of it, do it, you know if you can’t figure it out. But no, I never know, you know, I’m not gonna say I don’t have bad days, because I do. But I let it take sick, take its course with it, don’t settle it don’t settle in long enough for me to feel sorry for myself.
Communication and attention span are affected by cerebrovascular accident
Bill Gasiamis 30:39
That’s a very good example, of aphasia. Was it worse before this particular interview, has it improved, what have you noticed, has changed with the way that you communicate now?
Jennifer Hale 30:56
It improved a whole lot. Because in the beginning, all this was over here. And a friend of mine told me he said, chew gum, just chew gum, and you’re gonna find that to eventually your side is going to kind of even out. And I did I used to shoot like, stick sticks out the sticks.
Jennifer Hale 31:23
And I still chew it, you know, but he was right. Eventually, it came. And I had exercises that they gave me that I still do. I say my ABCs. And when I read a book, I read out loud. So I, you know, the more I use it, the better it gets. But sometimes, I don’t like to hear myself say to me, I sound like a robot. So after a while, I just get quiet because I don’t like that part. And then we’re all ready for exercise some more, but when it’s much better, that’s your question.
Bill Gasiamis 32:08
So you hear yourself in your ears like a robot? Did you ever hear like a robot? Did you ever notice yourself? Being aware that you can hear yourself before? Does that make sense? Do you know when you’re talking? I’ve never actually paid attention to, the sound of my voice sometimes people will say you love the sound of your voice if you’re the kind of person who talks a lot and is chatting all the time.
Bill Gasiamis 32:41
And I’ve always said Yeah, I do like to send them my invoice. But I haven’t paid attention to it. Are you saying that what happens now is the sound of your voice comes into your awareness? And then as a result of that is and it does that because it sounds strange.
Jennifer Hale 33:00
Sounds strange. It sounds just like a yeah, just sounds strange. I can’t even explain it. Like
Bill Gasiamis 33:12
Like an electronic voice.
Jennifer Hale 33:15
Just like that.
Bill Gasiamis 33:18
And do other people’s voices sound like that to you? Or is it just your voice that sounds like that?
Jennifer Hale 33:26
Just my voice, with other people. You only can talk for so long as I have. I can’t talk take a break. If I’m around somebody who talks talk talk. Yeah, to take a break. And I never that bothered me before. Because, you know, communication is the key. But now I’m very in tune with conversations. And if it’s a conversation that I feel like it’s not meaningful or it’s not adaptive if I could say that, in other words, I don’t want to just hear you talk. I you know, it gotta be some some information to what we’re talking about.
Bill Gasiamis 34:30
There has to be a point to the conversation, not just your chin wagging.
Jennifer Hale 34:36
Oh, that’s good. Yeah.
Bill Gasiamis 34:39
That’s an Australian saying.
Jennifer Hale 34:42
Oh, what is it said again?
Bill Gasiamis 34:44
Chin wagging.
Jennifer Hale 34:46
Chin wagging. I’m gonna borrow? No, I’m not gonna borrow it and I’m gonna say it if you don’t mind.
Bill Gasiamis 34:55
You own it. So what we do is we can say something Unlike let’s go for a chinwag, that means let’s go for a talk. Let’s go for a bit of a talk. Let’s get it. And then this goes over here. You could, you could say something like, you know, he’s just having a chinwag. He is just talking, and he’s just getting things out.
Bill Gasiamis 35:17
He’s just saying stuff. You know, it’s just it’s just to describe what people are doing is that more than anything, they’re just moving the chin rather than having a deep and meaningful or important conversation. It’s just, it’s just a term that suggests there’s talking going on, but there might not be a lot of substance behind it. But that’s,
Jennifer Hale 35:40
yeah, yes. Okay, for a little while. And then after, wow, my brain just shuts down automatically, because I’m not receiving nothing to keep, keep it productive, you know,
Bill Gasiamis 35:54
to keep you stimulated and focused and try to work out what’s going on. And then it becomes it sounds like then it becomes just noise. And then that becomes tiring because I understand how noise can make the brain tired. Especially if it’s just for no purpose.
Jennifer Hale 36:16
Right. And there’s no Hartfield is that’s one of the things that when I realized that about myself, I caught a family meeting remark by its children hearing that, um, no, look, I’m not the same, you know, I’m not, you know, it used to be timely to talk to two and three in the morning just, you know, chinwag but no, we can’t do that anymore.
Jennifer Hale 36:45
And you have to make sure what you talk about is important or something that’s going to be worth listening to because my attention span shuts down real quickly. And I don’t want you to think I’m being rude when I’m not, I just have to listen to my head and it says enough is enough. I check out.
Bill Gasiamis 37:09
And you’ve got to save that energy for the important conversations, so you can have those and pay attention to them. And some of the other conversations, just take some of that battery energy from that space.
Jennifer Hale 37:24
Right. Right. Right, is on reserve, I’m putting it on reserve. And I noticed if I don’t talk all day, by the end of England. I have a lot. You can wear me out for a minute. But if you start in the morning, I’m gonna last.
Bill Gasiamis 37:49
You say it’s so well, that’s so true. That’s exactly what I experienced. I was never able to communicate it. I would just say, Look, I’m not interested in talking and people might take it the wrong way. Or, or, or just sound like I’m getting overwhelmed or I don’t want to hear about it. Or just don’t tell me I don’t want to know. Sounds like you have a better way of letting people know.
Jennifer Hale 38:16
I’m not in the business of trying to hurt people’s feelings. I never was, you know, because if it’s something about you, I don’t care about I don’t set myself up for the nonsense. So I try to be front. This is how it is. I’m not trying to hurt your feelings, but I gotta look after what my body’s telling me to do.
Bill Gasiamis 38:46
Your grandmother so the kids are around from time to time. What is it like when they’re around? Because they’re full of energy and they want your attention and they want to play and they want to be loud. What’s that like?
Jennifer Hale 39:00
In the beginning, as I said, I named my arms baby. It took a while for them to comprehend what was going on because, to be honest, all my grandkids my oldest granddaughter she calls me Granny the one under her calls me Ma. And the three around here call me Grandma Peachy so they all have their little name for their personality and my personality.
Jennifer Hale 39:35
So they used to see grandma peachy, you know, she always doing something, you know, but when they saw I couldn’t I so and I used to make T-shirts, printed T-shirts and I will get them involved. Crafting was my thing. When they said I couldn’t do it. They were Oh No Grandma Peachy. They will be so and they will all come and rub my arm or relate it and who went to the store?
Jennifer Hale 40:09
They will take my hand all three of them will grab one grab a wrist one or grab the elbow one regret and they all walked me across the street. It was so attentive in the beginning when they sang Grandma Peachy Can Move a little bit Oh, it was over.
Jennifer Hale 40:30
Okay, you guys still gotta calm down not fully back but they do have to understand you know, when I’m in my room you know that’s my rest time and they knock on the door to make sure I’m okay then when I come out to I laugh and talk with them but when it’s enough they understand they don’t feel bad it just okay grandma peachy will see you whenever you come back out. They’re very understanding.
Bill Gasiamis 41:08
Children are very smart and they understand they get things a lot more quickly than some adults will ever. It’s amazing how children can respond and know where the boundaries are. Know when you need attention and know when it’s okay to leave you alone. That just really gets it.
Jennifer Hale 41:31
Right? They do get it they do. You know, and I didn’t want them to feel sorry for me. I wanted them to still know that. I’m still your grandmother. I’m gonna do all I can with the shirt that I have, but you can’t wear me out. They understand they give me my rest.
Bill Gasiamis 41:55
Why did you choose to name your hand or your arm Baby?
Jennifer Hale 41:58
You know what? I just say Oh, baby you’ll be okay. And I guess it was just the nurturing part that came out. No, it was just lying in the hospital bed. And after the nurses do what they do, put my arm on a pill. And I looked at it because I couldn’t it wouldn’t move. I think the Lord I have feelings though.
Jennifer Hale 42:30
It was some people who did have to fill in it still couldn’t move. I think the more I have feelings because at least I can feel the sensation, you know. And I will say babies all right, you won’t be okay babies. So I don’t know if that was just my way of telling my arm it was gonna be okay. Because the baby’s still going strong.
The power of positivity
Bill Gasiamis 42:57
Yeah, I do love that. It reminds me of a story when I was in therapy in rehabilitation, inpatient rehab, just after my brain surgery. And I was trying to get my left side to work in and there was a gentleman there who had a problem. I think it was on his left side. It doesn’t matter that one of his arms wasn’t working properly. And at the beginning, he was calling his arm a bastard
Bill Gasiamis 43:23
Wow, what a reaction. That was my reaction. I couldn’t believe it and I had a conversation with him about that. And the reason he was calling it a bastard was because it wouldn’t work. It wouldn’t do what he wanted it to do. And then I said to him if your arm did work, if it did what you wanted to do, what would you call it? And he said I would call him my friend. I said that’s interesting.
Jennifer Hale 43:58
So contingent if I’m saying it, right. If you work for me, I’m gonna call you my friend. If you don’t work for me, then you that other things.
Bill Gasiamis 44:19
So the thing was, it was conditional. It had to be doing something to be his friend. So what I said to him was, what if you just call it your friend now? Pretend it to your friend already? And see what happens. And you wouldn’t believe it. As soon as you change the word that he was using to describe his hand. His hand worked and moved and it did that task. It happened in the space of less than a second. He changed the word. He looked at his hand. Okay. A friend moved, and it moved the way that he wanted to.
Jennifer Hale 45:04
See, yeah, that negativity, I tell you, none of it, if it’s not positive I don’t want any part of it, and that showed him how powerful he is, you know, his mind and his arm. That was some good advice because I don’t know if I could have sat around and listened to him talking to his arm like that.
Bill Gasiamis 45:31
That was so interesting to hear. And then I had another friend who’s had a stroke. And she again, I think it was, it doesn’t matter which side one of her arms was not working the way that it was before the stroke. And the therapist that came to her house, called it the bad arm. Now let’s help your bad arm, and my friend said, don’t speak about my arm like that.
Bill Gasiamis 46:00
It’s not my bed, we’ll have to find another name for you to use, do not use the bed. And that particular therapist got a little bit annoyed and upset. But my friend wasn’t going to have it she was Clare Coffield, and she wasn’t going to have it, she wasn’t going to put up with it.
Bill Gasiamis 46:18
And she gave that therapist, a nice little lesson in how to speak about this sort of situation. And Clare already had a name for her. And it wasn’t I can’t remember what it was. But it wasn’t the bad arm it was in the positive it was named something in the positive.
Bill Gasiamis 46:45
So it is a very interesting thing for me to hear that you would instinctively which is lovely. It says a lot about you that you would instinctively name your arm Baby and then that’s an example of how we can get in our way for recovery without realizing it. Some people, don’t realize that the unconscious thoughts or the words that they have become used to using how they’re working against them.
Jennifer Hale 47:21
Right, right. Even in rehab, they were calling my arm. How’s Baby today? Oh, Baby’s fine. Oh, that’s good. Everybody knew to call my arm Baby. And it kind of lifted to know that Baby sounded so refreshing or sensitive or you know, just, you know, we’re going to take care of baby today. Thank you, you know, so yeah.
Jennifer Hale 47:52
And you know, and it’s just amazing, where, what I’ve noticed, since I’ve been going through this, how sometimes people are not sensitive to your situation, especially when you think they should be if you’re a therapist seem like you’d be more sensitive. But they get so I guess now to the fact that they just, oh, is this a job?
Jennifer Hale 48:22
And sometimes you have to remind them that I’m not just your job, you know, we’re here to be a team. But I’m not here, you know, I know you can pay to help me. Because without mentioning any facilities in Atlanta, in the beginning, it was kind of tough for me, because I did nursing for over 20-something years. That’s how I raised my children. So I’ve been in the medical field.
Jennifer Hale 48:57
So I’ve always respected people. I was a CNA. So as they say, I was hands-on, you know, hands-on, but I respect them I honor them you know, because that is so hard when you’re a different person than what you used to be in, you know, so when this happened to me, and some of the nurses would come in and just, oh, no, slow down. You’re not just gonna toss me around like that, you know?
Jennifer Hale 49:36
And then they’d be shocked because what I noticed was, they think because you had a stroke, you don’t have this. So they would just say what they wanted to say. And then when I said oh, no, I understand everything they will be shocked.
Jennifer Hale 49:52
No, so they insist. They won’t be sensitive anymore. They just want to Oh, she had a stroke. She’ll be all right. No, I’m not gonna be all right. I understand everything you tell me. Well, why don’t you just be nice across the board?
The hardest thing about the cerebrovascular accident
Bill Gasiamis 50:14
It’s a far better approach. I agree. What’s the hardest thing about stroke for you?
Jennifer Hale 50:28
The hardest thing is watching other people watch me. Like, if that makes sense. went before this happened, you know, I felt like I was part of the team, you know, you could walk into a store, nobody. But now I noticed people kind of lay the look and turn their hair or they, they’ll try to speed up in front of you. So they don’t have to look at you. And like I said, In the beginning, my whole site was over here, when I close my mouth, in the halfway decent.
Jennifer Hale 51:09
But when I open it, people jump because they don’t expect to see the slurred. So when I noticed that kind of stuff, I just kind of chuckled to myself. So for me, I respect the fact that I am a new me. And eventually, I’ll be back which is going to take time. But for others, it hurts my feelings to watch you watch me. Because you should. I’m still a person.
Jennifer Hale 51:41
You know, I’m still part of this community. Nothing has changed, you know, you seldom see people say, How are you doing? Do you feel it? Okay. They turn to here like they don’t, they don’t see you come in. So it’s almost like they want to exclude you away from you. But I still make them known. I’m still here. Hi, how are you?
Bill Gasiamis 52:12
People don’t know. The hardest part. Yeah, people don’t know how to be around unwell people. They don’t. They don’t know what to say. They don’t know if they’re afraid they’ll say the wrong thing. Or it scares them to see somebody that’s a similar age to them. That’s unwell. Because oh my gosh, that could be me.
Bill Gasiamis 52:34
I’d rather not think about it. There are a lot of things that go on in the mind of somebody who’s, we’ll call them normal. Not that. Not that that means anything, but we’ll just call them not somebody who hasn’t had a stroke, perhaps. It is very interesting. What is the thing that stroke has taught you?
Jennifer Hale 52:59
To be patient with me? To be patient. There’s no sense of rushing anything anymore. Even when I come back to 110% I’m gonna still be patient with myself. Because I watch once again, everybody hustling bustling moving fast going, like what? Why am I moving so fast? You know, work? patience with myself? Yeah.
Bill Gasiamis 53:32
Were you not so patient with yourself? Previously?
Jennifer Hale 53:39
No, I don’t think I’m the one that will put myself on the back burner. And that everybody else. So now I’m learning that I have to put myself on the front burner.
Bill Gasiamis 53:55
That’s a good lesson to learn because some people give, give, give, give nothing left. And then that’s not good for anybody because then you get burnt out, or you can’t give and be You can’t give to yourself and feel good about yourself. And there’s no point burning out and making it about other people. It has to be at some point about you. And now especially, it has to be about you first.
Bill Gasiamis 54:27
Because if it’s about you, and you get better, and you heal, and you get back to being the type of person in the family that can handle the noise they can handle the events that can if you can get back to that then you’re a you know, your job role in the family. Improves, so to speak, we’ll call it improves. I don’t know what the word is but you go back to to your role, and that benefits, everybody.
Bill Gasiamis 55:04
Whereas if you don’t go back to your role, because you haven’t been able to make it about you and focus on yourself for the first time in your life, then that’s not good. That’s not good and shows you why you might get back into your family a little different than you were, you might speak slower. Or you might still walk at 95% instead of 100. But still, it’s better to have you back with these little deficits than to have you wiped out and on the sidelines and always right, not around.
Jennifer Hale 55:42
Right, right. Yeah, that’s true. Yeah. I’ve learned a lot through this journey.
Bill Gasiamis 55:52
What would you say to somebody listening to this, who’s just started their journey as well? Well, maybe they’re a few years in. What advice would you give?
A message to other cerebrovascular accident survivors
Jennifer Hale 56:01
Don’t give up on yourself. Don’t give up. Every time you wake up is another day to make a better way. I try to learn something different every day. Give yourself a goal, I might not be able to get this cup up today. But tomorrow, if I could just wrap my fingers around it. Just make a goal for yourself and work at it because it happened. The baby was picked to my left leg. I couldn’t do anything with Baby. Now baby can wave at you. So give yourself time and hope that it happens. Don’t give up on yourself.
Bill Gasiamis 56:58
Beautiful words. I appreciate you reaching out and joining me on the podcast. Thank you so much.
Jennifer Hale 57:06
Thank you for reaching out to me. As I said, this is my birthday kickoff celebration. I’m glad I did it with you first.
Bill Gasiamis 57:15
Happy birthday for five days this interview will go out in a bit longer than five days. But it’ll be your birthday celebration interview.
Jennifer Hale 57:31
Yes, yes. Thank you so much, Bill. Thank you.
Bill Gasiamis 57:39
Well, thank you for joining us on today’s episode. I hope you enjoyed my chinwag with Jennifer. To get a copy of my book just go to recoveryafterstroke.com. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 58:01
A big big thank you goes to all those people who have already left a review for the show on Spotify or iTunes. It means the world to me, that podcasts live and thrive because of reviews. When you leave a review, you’re helping others in need of this type of content to find it a little bit easier to write your review and to leave a few words about what the show means to you.
Bill Gasiamis 58:25
Just do that by going to your Spotify or iTunes app and leaving a few comments and a five-star review. And just tell people who might be reading what you feel you got out of the show what it did for you and how it helped you. If you’re watching on YouTube, please do comment below the video I love responding to people’s comments on my videos.
Bill Gasiamis 58:48
If you are a stroke survivor with a story to share about your stroke experience come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify as a stroke survivor who wants to share your story in the hope that it will help somebody else who’s going through something similar. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover there is also a path for you to join me on the show for a sponsored episode, or for ongoing sponsorship.
Bill Gasiamis 59:21
Just go to recoveryafterstroke.com/contact, and fill out the form explaining briefly which category you belong to. And I will respond with more details about how we can connect via Zoom. Thank you once again for being here. Listening, interacting, commenting, and giving me your feedback. I do deeply appreciate you. See you in the next episode.
Intro 59:43
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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.
Intro 1:00:00
All content on this website at any length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:00:17
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 1:00:38
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Intro 1:01:04
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1 hr 3 min
March 25, 2024 Etanercept for Stroke Recovery – Andrew Stopps
Andrew Stopps flew from New Zealand to the United States to receive stroke deficit-reducing injections that improved his deficits
Episode 241: Brain Tumor, Stroke, and Hearing Loss – Andrew Stopps
Young Stroke Survivor Podcast Website
Young Stroke Survivor Podcast Spotify
From New Zealand to INR for PSE treatment by Dr. Tobinick, improvement in sensation & hand function
Instagram
Learn More About Etanercept
Dwayne Semple’s Remarkable Stroke Journey and Perispinal Etanercept
Highlights:
00:00 Introduction
03:50 The first deficits and information about Etanercept
07:52 Off-label use of Etanercept for stroke recovery
16:51 Preparation for Etanercept treatment
26:58 Etanercept helps reduce inflammation
34:34 Cognitive function testing and treatment for stroke
41:04 The initial improvements after the treatment
48:41 The number of shots required for treatment
54:14 Getting back to work after the treatment
1:01:26 Relearning how to play musical instruments
1:08:40 The follow-up treatment
Transcript:
Introduction – Etanercept for Stroke Recovery

Bill Gasiamis 0:00
Hello, everybody, this is episode 297 my guest today visited the Institute of Neurological Recovery in Boca Raton, Florida, run by Dr. Edward Tobinick to receive two injections of Etanercept, also known as Enbrel. The interview is a step-by-step retelling of what happened from the moment Andrew learned about Etanercept, the first consultation, the mission to raise the money for the trip and the procedure, what his deficits were like before the procedure, what happened on the day of the procedure, and what it’s like receiving the injections with the medication.
Bill Gasiamis 0:43
You will hear him speak about his deficits immediately after the injection. What happened in the days after the procedure was completed, and what life is like now that he has returned home to New Zealand and resumed daily living? Andrew Stopps. Welcome back to the podcast.
Andrew Stopps 1:02
Thank you very much for having me back.
Bill Gasiamis 1:05
Thank you for requesting to be back. We last spoke at episode 241. That’s almost 60 episodes ago. So that was a long time ago. It’s more than a year ago. Time flies. The reason we spoke is that you reached out to share your stroke story just like many of the people who have been on the show.
Bill Gasiamis 1:30
And you had a stroke in November 2021. And you had no previous symptoms, no idea that perhaps a stroke is on the cards. And you were also somebody who was recovering from a brain tumor in the past many years before that. Yep. When we chatted during the interview, we spoke about your symptoms, we spoke about pseudobulbar affect, and how you had inappropriate laughing at various times, we spoke about your identity, and how that was impacted because you’re a musician.
Bill Gasiamis 2:09
And there were some things you couldn’t do after the stroke. And we spoke about a whole bunch of other things. And since then, you have decided to do some research on Etanercept. Which is a medication, for lack of a better word that helps stroke survivors get some improvement in their deficits and seems to be helping people get some quality of life back. You are in the United Kingdom.
Andrew Stopps 2:54
No, I’m in New Zealand.
Bill Gasiamis 2:56
Ah, you’re in New Zealand. I don’t know why I thought you were in the United Kingdom.
Andrew Stopps 3:01
I don’t know why.
Bill Gasiamis 3:03
And you’re in New Zealand. And you recently took a trip to the United States, where you went to Florida where I believe the clinic that treats people is there. You had an experience, and you have something to share about that experience. And my first question is, how long ago was it that you were at the clinic for the procedure?
Andrew Stopps 3:37
So I was there six weeks ago. So I had the shot on the second of February and that made a difference.
The first deficits and information about Etanercept for stroke
Bill Gasiamis 3:51
Before you went there. Just tell us what your deficits were.
Andrew Stopps 3:58
So, I had the fatigue, cognitive fatigue. I had sensory overload. Problems regulating my emotions. My tongue was not on the side of my face was numb. So my speech was a little slurred I guess. Also, my hand was useless.
Bill Gasiamis 4:30
What does that mean? How was it not operating? Well, wasn’t it doing?
Andrew Stopps 4:34
It was like moving through molasses. It was so hard to move. And yeah, and I had bad pain in my right calf.
Bill Gasiamis 4:53
Okay, just from tightness, tension, and spasticity?
Andrew Stopps 4:59
Spasticity, so it was like a constant cramp that would sometimes get worse and sometimes, you know, lessen, but it was always there. So it made walking just, it was very uncomfortable and it was worse at night.
Bill Gasiamis 5:17
As far as your lifestyle, music, work, you know, the ability to be you around the house and all those types of things. What weren’t you able to do? What were you not able to participate in?
Andrew Stopps 5:35
Pretty much everything. The fatigue and the sensory overload precluded me from a lot of things. I couldn’t predict when I’d be fatigued, I could have a really busy day, the day before and be fine. And I could do nothing and have fatigue and vice versa. So it was really hard to predict. There were so many places I couldn’t go.
Andrew Stopps 5:59
Or if I did go, I can only stay for, you know, for a limited amount of time, from a few minutes to maybe half an hour, and then have to leave. So my ability to work was nil. Because I mean, I yeah, I wasn’t, I couldn’t be reliable, because I didn’t know how it’s going to be from one day to the next. And being at home. Like even doing housework. I had to ration out my energy for the day. So yeah, it was hard. It was very hard.
Bill Gasiamis 6:37
And at some point, have you heard about Etanercept? Yep. What was that? Like? How did you hear about it? What were you thinking? How did it get you curious about it? Tell us a little bit about that. Oh, my God, I better look into this type of procedure or product or service or medication.
Andrew Stopps 7:02
Yep. So it would have been probably about nine months ago. So it’s about June last year, I was doing some research into other Strokes, stroke recovery methods, and possible things I could do to help my recovery. Because I was so frustrated with not being able to do anything.
Andrew Stopps 7:25
And I came across a YouTube video of a 60 Minutes Australia story that talked about this woman that went to America and she had all these deficits, and she had this shot. And suddenly she could speak properly and her arm move better. And there was Etanercept. And I knew then that that moment, I have to do this. I have to try this shot.
Off-label use of Etanercept for stroke recovery
Bill Gasiamis 7:52
Yeah, fair enough. So that 60 minutes. Video Interview. I’m pretty sure it was about 10 years ago, and it was done at the Institute of Neurological Recovery. And that’s in Florida. And the doctor’s name is Dr. Tobinick and the interview was pretty was pretty cool because you got to see patients go through the process.
Bill Gasiamis 8:31
And then you can see the before and the after the interview, I interviewed them. And now on the Institute of Neurological Recovery YouTube channel, there’s a whole bunch of those stories. Where patients have been, they have a discussion about their deficits and the challenges they showed having the procedure, and then they have some time to recuperate from the procedure, and then they are interviewed about the benefits and some of them have amazing results immediately after the procedure.
Bill Gasiamis 9:09
And it’s in Florida, and there are a few people who are a bit skeptical about things that happen in Florida, as far as medical procedures because their laws are a little bit more relaxed than in some other parts of the United States. And when you ask somebody on the internet, especially on my Instagram page, and when I asked some people about Etanercept ages ago, there was a little bit of hesitation. Some people said it’s okay. Some people thought that it was just a little bit of a scam, to put it bluntly. So tell me about your first approach to the two heme, what that was like how you started the conversation.
Andrew Stopps 10:06
Because I come from an academic, academic background. My first instinct, obviously, in the video was to look up any research, any medical papers, anything I could find. I found a band with a lot of papers by Tonique, which were good, but I didn’t want to necessarily take his word. So I found some independently researched papers, some independent studies done in Australia and New Zealand, and realized that, yeah, these people were getting the same results here and in Australia, as they were getting in Florida.
Andrew Stopps 10:49
So I sent an email to the Institute and put out a questionnaire in the medical form about my stroke. And then the next thing is they booked her an online consultation. And in the meantime, I had to have a whole series of blood tests done, I had to board my medical reports of my stroke. And yeah, and it went from there.
Bill Gasiamis 11:23
Okay, that’s pretty easy. So you’re in New Zealand, and you got a list of blood that they wanted you to get some blood work done on? You had that done? First, did you get the results you sent across? And then was there another discussion? After that? Was there some kind of discussion about the process or the procedure or what was next?
Andrew Stopps 11:45
Yeah, so that once they get all the information, they book a consultation, and then you have about 45 minutes to an hour with the doctor, and he and he talk about the procedure? And, like, answers all the questions and everything like that.
Bill Gasiamis 12:05
Okay, so there’s a lot of upside, what are the risks? Were there any risks that you were made aware of, that you found in the research that you needed to be aware of?
Andrew Stopps 12:16
Etanercept is a drug that’s used for arthritis. So it’s normally injected into joints. And what it does is it reduces inflammation. And makes makes life more bearable. People who are having it done for that reason have to go on a long course, of treatment of a tennis app for months. And if you tend to that long, it can make you susceptible to infections and particularly reactivate certain infections, if you’ve had them before. Like, I think Tuberculosis was one of them.
Bill Gasiamis 12:55
Reactivate it. Wow.
Andrew Stopps 12:59
Because for stroke, you only have a maximum of three shots, and they’re the first two are done a week apart. And there’s the third one done a month later. Because it’s, it’s so few shots, there’s no side effect. And it either works or it doesn’t. So you either have a result, or you don’t. So the fact that there were no known bad reactions to this drug and you know, you have to sign a, you know, a waiver saying, you know, you’re aware.
Andrew Stopps 13:44
But, I mean, I’ve signed those for everything. So, you know, every procedure overhead, it’s, you know, had potentially devastating side effects. So, be Yeah, the fact that I would either have, you know, have a good result or where I would have no result, you know, was good, I can live with that.
Bill Gasiamis 14:05
In the description. When you type Etanercept into Google, you get an answer. Etanercept is a medication used to manage and treat autoimmune conditions, such as psoriasis, rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis, and ankylosing spondylitis. Seems like they’re all degenerative diseases related to bones and bone structures. Yep. But it doesn’t say that it’s for use in stroke, okay, so that’s kind of I think, where the challenges lie.
Andrew Stopps 14:55
And that’s where some people get nervous. Because it is an off-label use for that medication. Tobinick is the only one that does the treatment. And like I said, there have been studies done here and in Australia, where people have had the same, you know, benefit from it. But they’re just really slow. Adding it to the list of stroke recovery, medications, or treatments.
Bill Gasiamis 15:31
So you’ve gone through the initial discussion, you’ve delivered your blood, they’ve looked at your blood, and they’ve said, you’re a candidate. What did they say? How did it go from there?
Andrew Stopps 15:43
So obviously, one of the blood is to see if you’ve ever been exposed to tuberculosis because they don’t want that to be reactivated. And my mind came out negative. So once they’ve got all the information, and they saw what kind of stroke I had, how long ago I had, and stuff like that, they then say, okay, yep, you’d be a great candidate for this. And they lock you in time for the initial shot. Okay. So I think I had my consultation in September last year, and the first available appointment was probably the second. So that’s my talk.
Bill Gasiamis 16:27
Okay. So then you have decided to go for it. Did you make the decision quickly? We, that’s Yeah,
Andrew Stopps 16:37
Yeah. Because I need to know, in my heart that have done everything possible. And if it didn’t work, then at least I know, but I had to know that I’d done everything possible to help my recovery. Cool.
Preparation for Etanercept for stroke treatment

Bill Gasiamis 16:53
You make a booking, you choose your flight, and you choose the accommodation. What is it like going on this trip? What are you thinking? How are you processing this whole time because it’s not a holiday, you’re not going to a beautiful, warm destination where you’re going to kick back and enjoy the sun, have a few Chardonnays or whatever, it’s a very different idea the traveling is for a specific purpose. Are you completely totally set in your mind that I’ve got to go get a result? I must get a result I have to get a result like what were you thinking?
Intro 17:29
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 17:53
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 18:13
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. And they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Andrew Stopps 18:33
I’m just going to back up a little bit. So the treatment itself was not cheap. It’s very expensive. And so I had to crowdfund for it because there’s no way I can afford this treatment when I’m not working.
Bill Gasiamis 18:51
Okay, can you tell? Can you tell me how much it cost? Yeah,
Andrew Stopps 18:54
sure. So the injections, the injection itself is $8,400. US The consultation is $1,000. And subsequent injections are $8,400. So when you and that’s us, when you factor in the exchange rate, and then the flights and everything else, it does mount up the cost of having this.
Bill Gasiamis 19:20
So three injections at $1,400?
Andrew Stopps 19:23
I never had three but yeah. So it mounts up.
Bill Gasiamis 19:33
So the procedure, just the procedure, the two injections, and the travel is somewhere in the vicinity of about 18,000 US dollars.
Andrew Stopps 19:48
And then you know, the exchange rates for New Zealand dollars in my case Australian dollars and yours and, and, you know, it the cost mounts.
Bill Gasiamis 19:58
Yeah. To AUD it’s 27,000 Australian dollars. Okay. It’s not something that everybody can manage to fund, for sure.
Andrew Stopps 20:11
And I had to crowdfund for that amount because I didn’t even have close.
Bill Gasiamis 20:19
I love the fact that you did that. So how does that? How does it feel to put that out there? In one of the chapters in my book, I talk about the things that people need to access to improve their recovery. And, I know that things to help people improve their stroke recovery are always expensive. One of the things I suggest is that they jump on to find a crowdfunding provider and run a crowd-funded campaign. What’s it like for you to go through that in your mind that you’re going to ask people for money to help you do this?
Andrew Stopps 20:56
My, initial reaction is to not want to do that. But I realized that this was important to me, I needed to do this. And this is the only way I could do it. So um, so yeah. So that’s why, why, and how I started. And literally, I started raising funds. I think, the same day, I had the consultation. So when I knew that I was a candidate. That one I knew that I had a date booked for that day, I, you know, set up the crowdfunding.
Bill Gasiamis 21:40
How long? Did it take you to raise the money? Or did you raise all the money?
Andrew Stopps 21:44
Yeah, so it took me five weeks. And initially, it was very slow. And in the end, some were very kind and donated. Like the bulk of the money in.
Bill Gasiamis 22:04
And do you know who that somebody was?
Andrew Stopps 22:06
Yeah.
Bill Gasiamis 22:07
Wow, that’s cool. ‘s an amazing gift, isn’t it?
Andrew Stopps 22:11
It was an incredible gift.
Bill Gasiamis 22:15
Now, I love the idea that you reached out, you overcame your inability to ask for help. And especially in this way, asking for money for a trip to do something like this. It seems very, it seems selfish, but it’s very selfless. To do that, I think it’s a very amazing thing that you did go out and seek help and ask for support in this way.
Bill Gasiamis 22:45
And what you’re doing is you’re not putting a gun to anybody’s head, you’re just saying, Hey, this is what I’m planning to do. If you can help out, help out. This is what the money is gonna go towards. And nobody’s obliged to do anything, if they want to they can.
Bill Gasiamis 23:00
And that’s what I love about it. Right, we need to overcome the barrier of how it feels to supposedly ask for help, everyone is entitled to be helped to have help. And everyone’s entitled to go after the best recovery they can go after. And in this day and age, with the fact that we can raise funds through these services, I think it’s so important that we utilize that service and ask for help.
Bill Gasiamis 23:30
And just even if you raise half the money, or a third of the money, or a 10th of the money, it doesn’t matter, as long as I as long as you’re being creative about that, and you’re being honest about what you’re going to do with the money. And then you’re being honest with the whole process. I think it’s really important that we encourage people to ask for help more.
Andrew Stopps 23:51
Yeah. That’s always been hard for me. Like I’ve always had, I’ve always found it hard to ask for any help, even with my stroke recovery. So yeah, that was a big, a big step for me, was doing that. But I just knew how important it was.
Bill Gasiamis 24:11
Brilliant so you’ve raised the money, that’s a huge thing that you’re excited or imagined. What are the what are the emotions, the feelings that you’re going through when that happens?
Andrew Stopps 24:23
I mean, I was elated when I had all the money and I could buy the ticket and I could, you know, pay for the treatment. That was like it just I was excited. But also with Etanercept the way that it works is it reduces inflammation in the brain. So when you have when you have a stroke, chronic inflammation, and it’s inflammation, that causes a lot of deficits.
Andrew Stopps 24:55
So, if you have the inflammation, Etanercept is gonna work, you know, fantastically for you. But sometimes you don’t have much and the deficits are caused by actual brain damage from the stroke. So and it’s hard to know, you know, whether it’s your deficits are caused, by the inflammation or by brain damage. So it’s it’s kind of a gamble. And I kind of felt going there, and I will and when I arrived there, I felt, wow, what’s going to happen if nothing happens?
Andrew Stopps 25:34
Like, I know, I was saying to everyone and myself, you know, um, you know, accept whatever happens happens. But I knew deep down, I’d be gutted. If nothing happened, and I’ve come, I’ve traveled all that way halfway around the world. And, and there’s no result.
Bill Gasiamis 25:54
You got your heart set on it. You’re thinking about all sorts of things related to what you will be able to do what you hope you’re going to be able to do how you hope it’s going to feel all the improvements you hope you hope to get. And then there’s that niggling thing in the back of your mind that goes, you might not get anything.
Andrew Stopps 26:12
Yeah. And then I would feel like a fraud. Because, you know, I’ve asked all these people for money for help, and nothing happens.
Bill Gasiamis 26:22
No result. Yeah. The people donating there. Are they aware that there’s a possibility of no result? Have you set that? Have you given that information to them so that they know that you’re going to go there and what happens if you come back with nothing?
Andrew Stopps 26:38
Yeah, I had written, and I’ve done some videos that sort of explained how Etanercept worked, and that there were no negative side effects. It either works, or it doesn’t. And I won’t know until I’ve tried it.
Etanercept helps reduce inflammation
Bill Gasiamis 26:57
You know, what you said was interesting that it helps decrease inflammation. One of my main goals during my stroke career was to reduce inflammation in my brain. And, and the reason was, is because I was on dexamethasone, which is a steroid, that helps to reduce inflammation.
Bill Gasiamis 27:16
And it’s also used by people who have arthritic conditions. And it does reduce the inflammation in the brain. And it helps recover the brain and heal the brain. But it has a whole bunch of side effects. You’re going to typical steroid side effects, anger, weight gain, inability to sleep, a whole bunch of things. And it was terrible to be on. And because it was so terrible, I just decided to Google, you know, back in 2012, I decided to Google, how to decrease inflammation in the brain.
Bill Gasiamis 27:52
And nutrition came up as a main ingredient, the main way to do that, right, so some foods, were going to make inflammation in the brain worse, and some foods were going to make inflammation in the brain better. And what I know now is that if I, for example, pasta, or bread, that they are, they tend to be inflammatory foods, for lack of a better word. And what they do is they kind of switch on the inflammation in my brain, and they make me more fatigued, more tired, they make my deficits worse.
Bill Gasiamis 28:24
And it’s kind of like this dance, if I can avoid having bread, or pasta, that particular sugar, for example, is another one. If I can avoid having those foods, I don’t notice my deficit so much. They’re still there. I still feel my arm the way that it feels in my leg the way that it feels. But, but it kind of allows me to settle things down. Which means that the deficit inflammation is temporary, right?
Bill Gasiamis 28:55
So in a minute, I want to talk about that. I want to talk about how a tenant said, well, let’s talk about it now. It decreases inflammation. But from my understanding, inflammation can be reactivated by me, for example, by doing the wrong thing and eating the wrong foods. What happens in this instance is designed to reduce inflammation. But then does it last?
Andrew Stopps 29:25
Yeah, it does.
Bill Gasiamis 29:26
Okay. Let’s leave it at that. It loves. All right. So the day of the flight comes? Yep. Who did you travel with?
Andrew Stopps 29:41
In New Zealand, to Houston, and then united to
Bill Gasiamis 29:45
Florida. On your own or with anyone else with you?
Andrew Stopps 29:50
Know, I work with my husband. I needed to have someone with me. I can’t navigate and I couldn’t ever get to airports alone. Um, I happen to have a whole sensory overload. So I had to have headphones to block out the sound, which is support. Filler Lorazepam on hand, just in case. It was yeah, it was a bit of a bit of a mission to get me there.
Bill Gasiamis 30:22
You arrived in Houston. And then you’ve got a connecting flight to Florida.
Andrew Stopps 30:28
Well, no, we didn’t actually because my husband is American. So we got we flew to Houston, and then flew on to Memphis and stay with his family for a week. So we got the week before the shot. And then we flew down to Florida. The day before the shot. I had the injection in the morning, and then we flew straight back to Memphis that afternoon. And I spent another week with his family. So it was nice that way. It was it was yeah, it was really good to see the you know, to see the family.
Bill Gasiamis 31:05
It was less rushed. Therefore, you guys have to pay for less accommodation. You got to see the family. Yeah, might combine all of that. That’s cool. So the day comes to jump the plane again, to go to Florida.
Andrew Stopps 31:26
Well, yeah, because I’m American airports are notoriously bad to navigate. And even worse when you’re dealing with all the deficits from stroke. So yeah, the fly down, though, was I was I was anxious. And then we were delayed and were supposed to get in at lunchtime on the day before, and we got in at 1 am or something. So it was just, it was yeah, it was a nightmare getting there. And I really, I thought is this, is this a sign? Like is the universe telling me not to do this? Because we just, you know, it was so hard.
Bill Gasiamis 32:09
I love it my favorite philosopher from back in the day, Marcus Aurelius had this line, which said the obstacle is the way so for me, it would have been a sign that that was the way to your particular goal there. Do the obstacles the challenges or the problems mean that you were on the right path?
Andrew Stopps 32:30
Yeah, it is yeah.
Bill Gasiamis 32:33
You’re right in Florida. And then what do you do to your accommodation? Do you go directly to the clinic? What happens then? Okay,
Andrew Stopps 32:41
When we got to Florida, it was night, and we went straight to the hotel. We got there at about 1 am. And then we had to get up at six the next morning to get out to the clinic because we were about a 40-minute drive. So we had an Uber out to the clinic the next morning. My appointment was at 8:30 in the morning, so yeah.
Bill Gasiamis 33:04
The appointment, you go to the appointment, you see the medical staff for the first time, what’s that? Like? What’s the welcoming procedure? Like?
Andrew Stopps 33:15
It was interesting. So the very first thing that happened was a COVID test. We got COVID tested, and then we went through, obviously both negative and we went through and I had about two hours of cognitive functions testing now, okay, I never had cognitive function tests here after the strike. I hadn’t had one since I had the brain tumor. So that in itself was fascinating, because I learned other deficits I had from these tests that that went were discovered, but you weren’t aware up. Like I had aphasia.
Bill Gasiamis 34:06
Okay. That’s interesting, definitely interesting because I know what that’s like because I had after the second blade in my brain, I had a lot of deficits, cognitive function deficits. For example,, the ones that I know, impacted me were, that sometimes I couldn’t remember to begin or start a sentence. Sometimes. I could remember who came to visit me. You know, my timeline was all messed up.
Cognitive function testing and treatment for stroke
Bill Gasiamis 34:34
I had no idea I couldn’t work. I couldn’t type an email. I couldn’t do any of that stuff. Like there was a whole bunch of problems. And I remember going to my psychologist and saying to her, that I had all these troubles and she said to me, has anyone done a neuropsych assessment? And I was like, No, what’s that?
Bill Gasiamis 34:51
She was the first person who introduced me to neuropsychologists and told me that I should go and see somebody and get assessed because they’ll give me a cognitive function test that was the first time I realized that maybe we need to look into this a little a little further, and they’ve mentioned it to me either. Yeah, turns out had some deficits in that space, and then they went away.
Andrew Stopps 35:13
It just boggles my mind that, you know, we have a, like a traumatic brain injury, and no one is testing the cognitive functions. I just, I kind of get my head around that, that there’s something that they don’t do. But anyway, they discovered I had anomic aphasia. So that meant that, for example, if I was told to name all the words, starting with S, I couldn’t.
Andrew Stopps 35:42
So you know, that was one of the one of the tests I had to do in a minute name, although words like this now could like, say, two words, and then I’d be going on. And that was it. Even my last name stops. I didn’t say, my husband’s name’s Sean. Like, I didn’t say, and he’s looking at me going. You know, and it’s, it was amazing. And like, I think there were three letters that I had to do that with, and all of them were the same.
Andrew Stopps 36:18
I just sat there going. I couldn’t think of any words, it was. Yeah, it was it was it was amazing. And, you know, that they test to see how much function my right hand had. And it was so actually good having those tests and, and getting, like a really clear idea of what my deficits were and how, you know, how bad they were.
Bill Gasiamis 36:50
It’s obviously to gauge where you’re at, get a baseline, yes, that they can then determine the impact of the intervention of the medical procedure, right on the shot. Yep. So it’s that’s taken about two and a half hours. Are you hardly exhausted by then?
Andrew Stopps 37:10
Oh, my God, I’m, I’m so fatigued at the end of that time. I mean, I was trying not to cry. Because I was so exhausted. I just wanted to sleep. But then, of course, I was ushered through to the treatment room. I think we had like 10 or 15 minutes, where I was just sitting, waiting. And then the next thing I was throwing the treatment room, and there were other patients there as well, having, you know, second or third treatments done.
Bill Gasiamis 37:46
Okay, did you get to meet any of those patients? Did you speak to anybody in the waiting room or anything like that?
Andrew Stopps 37:52
Oh, no, because we all had like, separate rooms that we were in? Yeah.
Bill Gasiamis 37:57
Okay. So then you’re being taken into the treatment room. Tell me about that procedure. How does that go? The extra treatment? Yeah, the process before you receive the injection during the time, you’ve done the testing, you know, where your baseline is?
Andrew Stopps 38:17
So after that, I didn’t meet Dr. Tobinick. I’d spoken to him online but I never met him. I was with his medical staff beforehand having all the tests done. And then he reviewed my results and then he came in and we talked about it you know, my deficits and and maybe the fact that I’m a musician and what I’d hoped to get out of the treatment, and yeah, okay, all right. And then he told me like well, this is what to expect you know, the feeling you when you get the injection and where he does it and how they rotate me head down on the table.
Bill Gasiamis 39:09
What does it feel like when you get the injection is this some kind of a sensation that you notice?
Andrew Stopps 39:14
There is so he said that when you get the injection they do it in the back of your neck between the vertebrae. So it goes into your spinal fluid. He said that some people feel the warmth from the medication going in the bitter thing and the metallic taste. It felt to me it felt hot. When it went in it stayed crazy like a beasting and I definitely got a metallic taste but as soon as he stopped putting the fluid in then that sensation stopped but it was uncomfortable.
Bill Gasiamis 39:54
Okay, for sure. So the penetrating your spine through tool The vertebrae accessing the cerebrospinal fluid through the spinal cord. Yep. And they put an injection in, you have the feeling and, when they’re putting the injection in your face down on a face down where I know.
Andrew Stopps 40:19
So what I’m doing at the time is I’m just leaning forward, and sorry, exposing the back of my neck. And then once he’s put the injection, and the needle itself is so tiny, like, I didn’t feel the need to go in, it’s just the medication. Then you lie back, and then they rotate the chair. So it’s flat. And then so it’s it goes. So it’s head down your legs above your head height. Yeah, yeah. Yeah. And your legs are strapped down, so they don’t slide off.
Bill Gasiamis 40:49
Yeah. And from my understanding, maybe I’m wrong. The reason that they do that is because they want the medication to go through the blood-brain barrier and enter.
Andrew Stopps 41:01
That’s correct.
The initial improvements after the Etanercept for stroke treatment
Bill Gasiamis 41:04
So from the injection. After the injection, immediately, you’re tipped backward so that your legs are above your head. How long have you been in that position? About three minutes? Okay. And in that time, are you noticing anything happening?
Andrew Stopps 41:25
Definitely. So the first thing I noticed, when I was laying there was that my fatigue just dialed down. It was like some, some was taking a switch and going fatigued on 10 9 8 7 6 5. And, like, within three minutes, all my fatigue had gone. And my need to cry had gone, it was gone. So that was the first thing I noticed. And then they brought him back up, right, and set me back up. And then I started noticing other things.
Bill Gasiamis 42:01
What other things did you notice first?
Andrew Stopps 42:05
So the pain in my leg was the same, it was like someone taking this dial and dialing it down until it was gone. And this is one of the first five minutes you could hear my speech getting better and better. And I can start to feel my tongue in my mouth. And that sensation was so weird because I didn’t realize that I had no feeling in the tip of my tongue. And suddenly it comes back.
Andrew Stopps 42:38
And I had this bright big tongue in my mouth. And it was so so off-putting. And even today, six months later, I had developed bad habits with my speech to compensate for the fact that my tongue was numb. And so I’m trying to undo those habits now.
Andrew Stopps 43:02
But yeah, that was what happened. And then they gave me a glass of orange juice for the metallic taste. And I took a drink of it. And the taste was just unbelievable. Like, I didn’t realize how my tastes had been affected as well. I had lost some of my taste. And it just was like, This taste was so bright. That’s the only way I can describe it.
Bill Gasiamis 43:29
Okay. Yeah. That makes sense. Oranges. Sweet, bright. Okay, I get it. Yeah. So you’ve, you’ve noticed your tongue is back on board. Fatigue is dialed down, that pain in your leg is dialed down. What else have you noticed?
Andrew Stopps 43:48
And then they asked me how my head was. And so I started moving my hand and like, it doesn’t feel like molasses anymore. I can move it freely, is just really weak. And as silly as it’s getting stronger. But yeah, I’m having, to learn how to move again. But at the time, all of a sudden, my head was just not hard to move. Yeah. So I noticed all those things happen within the first five minutes. Was it just amazing?
Bill Gasiamis 44:26
And then are you on your feet? At all, when you get on your feet? How soon are you on your feet?
Andrew Stopps 44:32
So probably. So after I’d had the shot and I was back upright again, they put the camera on, and he talked me about what I was doing and what I was wasting. Then they do some of the contract tests again like the the Aphasia test, and suddenly I can name all these words starting with s and t and other letters. Um, and had jumped from like to, you know, in a minute to nearly Well, 30 words in a minute. It was it was just so quick. Yeah, it was it was so fast how it happened, how I got things back.
Bill Gasiamis 45:22
What’s the husband saying? I’d be an emotional wreck. I’d probably cry my eyes out if I were you by then. And I’d have everyone in the room, you know, off the deep end with me as well. Yeah, as a coping.
Andrew Stopps 45:36
It was it was a bit like that. Yes, it was. Yeah, especially when my hand can start to move. And we realize that now, me being able to play my instruments again was possible. That, yeah, that was when things got emotional. Yeah, because having lost that ability for two years, was in a way heartbreaking. And subtly. You know, seeing seeing the light in the tunnel was amazing.
Bill Gasiamis 46:19
What instruments were you a fan of before you had the stroke?
Andrew Stopps 46:27
Clarinet saxophone and flute.
Bill Gasiamis 46:30
Okay. So very, I hate to say it this way. But they’re very handsy kind of instruments, right? All the dexterity needs coordination of all the fingers. It’s a big job, right? So you realize that you’re probably going to be able to somehow play it again? Is that what you realized?
Andrew Stopps 46:51
Yeah, yeah. Because suddenly, I can move my fingers like independently, which, you know, I mean, I can move my hand, you know, a bit before the stroke a bit, sorry, a bit before the shot, but my fingers have moved like two at a time or, you know, be pulled by other fingers. That might mean Oh, my index finger was hardly moving at all. So suddenly, you know, having all of my fingers back was amazing.
Bill Gasiamis 47:20
So before, they didn’t have individual control, so to speak, they had moved, or didn’t move together, they kind of had were impacted by each other rather than separate from each other.
Andrew Stopps 47:35
Yeah and also, my thumb wasn’t rotating properly. So I had no pinch at all. And I need that, that thumb to be rotated to better put it behind the clarinet. And now it’s rotating.
Bill Gasiamis 47:50
So then you’re five minutes in, all these things have come back. All those things have recovered, dialed down. You’re aware that some things are going to be possible that weren’t possible before? And then what happens after the first five minutes? What’s the procedure like?
Andrew Stopps 48:13
I think that’s when they gave me the tests on some of the tests again, where I was, you know, scoring sort of low on the tests and to see, you know, how much improvement there was. And then, once they, once they, you know, had done those and seen how much improvement there was. I get that is your sort of central New a really, that’s, that’s the end of it.
The number of shots required for Etanercept for stroke treatment
Bill Gasiamis 48:41
Okay, so why do some people need more than one shot?
Andrew Stopps 48:48
It depends on how severe the deficits are. So, if it works, if the first shot works and the deficits are severe, then the second shot is going to help improve those. And then if they’re severe, a third shot like a month later, will, you know, take it to the next level again. All
Bill Gasiamis 49:10
in all, how many shots did you have to do? Okay, how long after the first show didn’t have the second shot? Awake? Okay, so,
Andrew Stopps 49:21
we did the same thing, but this time, when we flew back, we didn’t go back to Memphis, we went straight to Houston and then flew back to New Zealand. But there was no that I didn’t get as much reaction or improvement after the second shot. I think because the first shot didn’t say much.
Andrew Stopps 49:49
We did the same thing. Again. Some went down the night before. I had the shot, and then the afternoon flew, flew out. Okay. So I mean, I could Travel everything coming back after the first shot was just it was chalk and cheese. It was unbelievable.
Bill Gasiamis 50:08
Were headphones necessary? Were you having any sensory issues?
Andrew Stopps 50:12
Nothing. I didn’t have anything at all. It was incredible. So suddenly I met at a busy airport with loads of people and flights delayed normally I’d be, you know, doing everything I could to block my senses out. And I was just another annoyed customer because the flight was delayed. It was It was unbelievable. How, yeah, how quick and how much change there was in just a few hours. Getting there and leaving.
Bill Gasiamis 50:47
How long does the flight from the United States take to New Zealand?
Andrew Stopps 50:53
14 hours.
Bill Gasiamis 50:55
Okay. And what’s that trip? Like normally, when you were going there? What was it like to be on the plane for 14 hours?
Andrew Stopps 51:02
It was horrible. I had to keep getting up and moving around because parts of me wouldn’t cease up. I had no eyemask headphones to block out sound. It was just yeah, it was it was just I took some sleeping tablets and translated for most of the trip. Because it was just Yeah, it was horrible. Coming back was It was great. was a really enjoyable flight.
Bill Gasiamis 51:38
Enjoyable. You have changed 100% If a flight for 14 hours is enjoyable. Something is going on there. So what you’re telling me is you got back and then what happens you get back and tell me because then you’re navigating your house for the first time since the meditation.
Andrew Stopps 52:02
Yeah, that’s the thing. Like, I couldn’t wait to get back because I wanted to see how everything was going to feel. And coming home, it felt like I was just picking up after two years where I left off. And that’s been a good thing and a bad thing. Because I’ve been trying to do everything I could do exactly as before the stroke. And I can’t, because my right side is physically still really weak.
Andrew Stopps 52:42
Because it’s been so basically immobile for two years. And so I get physically tired, like exhausted, because I’m, you know, doing everything I was doing before the stroke. You know, I’ve gone back to work for the first time since the stroke. While and even though it’s I’m limiting myself to two to three days a week. You know, it’s it’s physically tiring.
Andrew Stopps 53:22
So, relief teaching. The first day I did that, when I got back here I was stressed about it. I didn’t know how it was gonna be I didn’t know if I was gonna get you know, live in the class. I didn’t know what was going to happen. And when it didn’t, it was it was great. But you know, when you’re looking after kids for five hours a day and you’re on your feet, that’s even tiring when you don’t have a stroke. And so, yeah, like last week, I did three days in a row. And by yesterday, I was just like I was so physically tired. I felt like I’d run a marathon.
Getting back to work after the treatment

Bill Gasiamis 54:14
I can relate to that. That’s pretty. That’s pretty normal for people who are getting back to work after a stroke because it’s a big adjustment. Yeah, under normal conditions, even if you haven’t had an intervention like you’ve had is a massive thing to get able to be used to dealing with all of the drama, all of the children standing up thinking talking,
Andrew Stopps 54:41
was standing up I didn’t even think about how difficult physically that was going to be because I hadn’t been standing up for more than 30 minutes. Like I wouldn’t stand up for long periods. Right before that shot, and suddenly I’m standing up for like, you know, 1234 hours and wondering why my legs start feeling like jelly. You know, it’s just standing, you just standing Andrea, and why the hell can’t you do that? But, you know, if you haven’t been doing that for two years, it’s hard,
Bill Gasiamis 55:18
You got to retrain it, and that the deficit that you’re experiencing that weakness is something very common to a lot of stroke survivors, you know, one side is weaker than the other side, it does come better. I know, my left side is a lot is a lot weaker than my right side, the recently I started the gym. And I feared that I wouldn’t be able to do free weights. So for example, when I was doing a dumbbell bench press, I thought that it was better to use a bar and one of those machines that are safer in my mind to do a bench press on.
Bill Gasiamis 55:18
So that when my left arm gets weak, I was concerned that I would drop the weight on my left arm when it took, and also thought that I wouldn’t be able to hold the bar level and in a balanced position. But it turns out that after a long time, and being gentle with the recovery, and starting on the machines that are supported, and then doing very lightweight, and just getting good at the movements, that that you’re bringing, I was bringing that left side up, back online, back online, just teaching a process, teaching at a process.
Bill Gasiamis 56:36
And then with the weight, the weight was the correct weight for my left side, to get to 10 repetitions, for example, three times, it’s a bit like from my right side. But it doesn’t matter. Because I’m not trying to lift the heaviest weight possible. I’m trying to rehabilitate my left side, while I’m working on the right side. So we, so that comes like the strength does come back in time and it just requires rehabilitation, that’s all.
Bill Gasiamis 57:10
And just put something like a car, if you haven’t started the car for two years, and it’s just been sitting in the driveway, it’s going to chug and it’s going to feel a little bit different as everything starts to get lubricated and warm up again. And I find that my left side works better on the second and third rep than it does on the first rep. The first rep is kind of reminding me what to do.
Bill Gasiamis 57:38
And then it starts getting better. And then with the second set, the left side seems to know, oh, yeah, we’ve done this, we know what to do. And then we’re good to go. And I get more confident with the second and third sets as well. So it’s interesting. So you’ll get there. But I imagine, you know, you have expectations.
Bill Gasiamis 58:01
Even though you’ve had the injection, even though you’ve noticed there are benefits, you still have expectations of yourself. And you want to get back to normal processes and normal life as quickly as possible. And now you’re just kind of finding where where the threshold is. And yeah, you step back a little bit to give yourself recovery and recuperation.
Andrew Stopps 58:25
So firstly, the drug keeps working for about six months. So you see improvement over six months. And you don’t have to have follow-up shots. Like I’m not gonna have to do these every year or every couple of years. Like that’s it. But I have found this kind of distance now that my mind is clear now that I don’t have, you know, cognitive fatigue, now that I don’t have sensory overload. I’m thinking that I can just go back exactly to where I was two years ago.
Andrew Stopps 59:06
But in reality, things are changing, almost daily, like with my with my speech. That’s changing as as you know, my tongues are learning where to how to articulate words. My arm and my hand are changing all the time. And so it’s just yeah, it. There’s there’s so much newness that I have to get used to. While things are settling, settling in, the only thing that I have left over from the stroke is the muscles on the right side of my face.
Andrew Stopps 59:51
Automatically break into a smile when I’m emotional when they’re happy or Oh, not too though, just creep up. Which is interesting. And that’s the only thing now that I have left. From, from the stroke. Everything else seems to be falling into place. Like, is it coming back online?
Bill Gasiamis 1:00:20
You seem comfortable moving. I think is it your left side right now when we’ve been talking for about an hour, and your right side doesn’t get a lot of use. Is that just because of habit?
Andrew Stopps 1:00:31
Yep, I’m, I am constantly reminding myself and Shawn’s reminded me as well to use my right hand and use my right side more. And, you know, like, when I’m in the kitchen, for example, I will constantly think, you know, I’ve got to use my right hand to pick up the cart or to pick up a plate or to grab the cutlery, you know, to get used to picking it up. But then in other situations, like here in front of the computer, I forget again, because I’m so used to just doing everything left-handed.
Bill Gasiamis 1:01:17
Have you been able to pick up the instruments? I imagine it’s beautifully performed as before.
Relearning how to play musical instruments

Andrew Stopps 1:01:26
No, but it’s incredible. When I pick up, especially the clarinet, because that was my first instrument, and put my fingers on it, my right hand, just go straight to where it says go, it just remembers. It knows exactly what it has to do. And I can, like, move it on the keys, like three or four times, and then my fingers get too fatigued and my hand starts to creep up. And then you know, I have to stop.
Andrew Stopps 1:01:53
But it’s yeah, it’s it just feels like holding the clarinet was like putting on an old comfortable jumper. It just feels so natural, and so good. But it wasn’t gonna say we got back to back home from the States the day before Valentine’s Day. And Sean said to me that day. This is the best Valentine’s Day President I’ve ever had, having my husband back. And I was kind of hurt when he said that. I said I didn’t realize those were gone. And he said, Yeah, yeah, you were a different person. And now you’re back. You’re back to who you were. And that was emotional.
Bill Gasiamis 1:02:44
It makes sense. Because the partners and family members are dealing with how they experience you after stroke as well. They are mourning their losses about you, your relationship, and how you went about life. And they’re probably also thinking, Oh, why couldn’t we just go back together? And everything was the same as it was before?
Bill Gasiamis 1:03:10
Because I know stroke survivors who have said that, you know, I’ve said that. And then my wife has said that in not so many words. She said, Man, wouldn’t it just be good not to have any of this shit to deal with? And it’s like, yeah, of course. But, you know, we have to deal with it now.
Andrew Stopps 1:03:28
But I also think it was mainly the fatigue and the sensory overload the emotional regulation, like all other things, we had to factor into everything that we did every decision we made. And suddenly, we’re back home. And like, we didn’t have to worry about that. We didn’t have to worry about Andrew having a meltdown.
Bill Gasiamis 1:03:50
We went through similar things, you know, we’d be away. I’ve saved on a holiday or what have you. And I’d say to Christine, count me out today, do what you whatever you need to do, go and say whatever you need to say, but I’m out. I’m going to just chill out in the hotel room by the pool or at a cafe. I don’t want to be involved in any of it because I can’t and you know, that’s not It’s not fun to be overseas and not be able to do something for example, right?
Bill Gasiamis 1:04:19
Some people go through that at home. I couldn’t go to particular parties and events and all the things that people invited us to go and do and see. You know, you have to you have to not go sometimes you have to Yeah, heal and recover and not make it worse.
Andrew Stopps 1:04:38
Well, it’s interesting because the day after we got back from the first shot to Sean’s family, we went to a family dinner was his his extended family. And there were 21 people in the house for this dinner, from babies right away theater your elderly and it was So noisy and there was so much happening. And if that didn’t happen two days before, I would have lost about three minutes in the house, because it was so much to do.
Andrew Stopps 1:05:10
And I was just loving it, I was enjoying it so much. meeting other people and chatting. And it was just so it was so remarkable how I could go from not being able to tolerate that to being able to load that in a matter of 24 hours. You know, and some people who are skeptical of this treatment, and I’ve said yes, it’s a placebo. But I don’t know, I can’t see how that could be a placebo. Because it’s so major, it’s such a big thing.
Bill Gasiamis 1:05:52
But it’s also got some really good results in helping people with arthritic conditions and decreasing inflammation in joints. So it’s not placebo-like it wouldn’t work on arthritis in that way, yeah. Yeah, this is what you can’t get rid of when arthritis has done damage to joints, cartilage, and all that kind of stuff. You can’t undo the damage, you can only it’s like a brain, right?
Bill Gasiamis 1:06:20
When we get a brain injury, the injury doesn’t go away, in where it’s injured. The inflammation around the area is another thing. But the same thing with a bright, a bone that’s injured when the bone has become injured, the injury, the scarring, or whatever you want to call it is still going to be there. The wear and tear. Yep, so what so what it does is it decreases the inflammation signals around that so we can reduce the pain that people are suffering, it doesn’t take away that damage.
Andrew Stopps 1:06:51
What to noticed when I was doing my research leading up to this, and going online and asking people in stroke groups, you know, if they’d had the treatment and about it, and there was a small group of people that were really against it, and really, like one person, in particular, was quite aggressively, you know, discouraging me.
Andrew Stopps 1:07:19
He said, I know, people pay this money and nothing happens. Well, you’re told that from the start, like, It either works or it doesn’t. And this is why. So if it doesn’t work, it’s not because it’s a scam, it’s because you have inflammation, you have brain damage.
Bill Gasiamis 1:07:39
People need to understand that the damage is the damage once it’s there, it’s there, you’re not getting it back. If that means that the damage has caused you not to be able to walk well, then that’s not going away intercept. Is it 10 has is not real? Damage. No, it’s so in other parts of the brain that have been inflamed and do not operate properly to operate better.
Andrew Stopps 1:08:06
Yeah, yeah. And so, you know, there’s, there are people now who I’m talking to online, who will ask me about the procedure and the process, and may try and make a decision whether they’re going to have it. And it is, like, for me, the decision was, like, regardless of what happens, I have to know, I’ve done everything. So I’m prepared to gamble and take that risk.
The Etanercept for stroke follow-up treatment
Bill Gasiamis 1:08:40
Is there any follow-up now with the clinic?
Andrew Stopps 1:08:44
Yeah, I’ve got some paperwork I have to fill out in a couple of weeks, just to see how, you know how I’m progressing. But other than that, if I feel like in a couple of years, I want to have the third shot. Or then I’ll you know, I’ll do it. I’ll just, you know, I’ll see how much the improvement makes.
Bill Gasiamis 1:09:11
This is still an option. It’s a possibility.
Andrew Stopps 1:09:13
Yeah, yep. But then again, you know, it just depends on how much progress I make now, over the next couple of months. I mean, I’ve made such a huge amount of progress and like I said, I’ve just got to be careful of not burning myself out because I am like, going back and doing things exactly as I was doing like it’s funny, the school I was at doing a relief.
Andrew Stopps 1:09:45
Like when I came back when I started up again, was the school I was at the day before my stroke. And so it was like nothing had happened for two years. I just went from that Friday, to this Monday. And it’s two years later, I’m doing the same thing again. It was it was it was bizarre.
Bill Gasiamis 1:10:09
Like a two-year gap of stuff.
Andrew Stopps 1:10:13
Yeah, it’s like, the last two years didn’t happen.
Bill Gasiamis 1:10:17
Yeah. I Imagine what that’s like. One of the biggest challenges with me, helping people get through stroke is often struggling with the, you know, what do we tell people about, you know, how do we bring information to people, you know, things that we talk about getting doctors to talk on the podcast, it’s almost impossible. People don’t want to, yes, that kind of stuff, which is strange that you can get people to talk about it.
Bill Gasiamis 1:10:47
But I understand all the medical implications of that. What I loved was when you reached out and said, Can we tell the story of what my experience was with a teleseminar? And I thought, that’s something that we’ll need to do, it’s going to make a big difference to a lot of people listening about whether they go or don’t go.
Bill Gasiamis 1:11:07
And whether they like you they want to know, yes or no, did it work, or didn’t work, and that they’re gonna go after recovery, I want to encourage people who are listening to go back and listen, a couple of times get comfortable with the process that Andrew had to go through.
Bill Gasiamis 1:11:28
Understanding the implications of going there, the potential results that you might or might not get the funding, the cost that’s associated with this, and how to go about raising those funds is really important. And, and that’s, that’s about it for me, like, I appreciate you reaching out and sharing this story, because it was a gap in the knowledge base that was there that people were asking me about, and I couldn’t deliver them a piece of content that had at least one person’s version of events. And then sort of dispelled some of those myths as well.
Andrew Stopps 1:12:10
Yeah. Because the only videos you can find are the ones that are done on their website. And so and so it’s, for me, it’s important to talk about this to people and to answer questions and to, you know, to be valuable to be a resource because, you know, I’m not sitting in the, in the treatment room now and having a video done. I’m like, just I’m talking to you. I’m telling you exactly what it was like for me. And I wish that was available to me when I was trying to make a decision.
Bill Gasiamis 1:12:43
Let me just say, not that we have to this is not a paid endorsement, we are not doing a plight or the clinic or anybody like that we are two stroke survivors or one who was curious enough to go ahead and get that procedure done. And one who’s curious, because I want to get information out to people and give them something to consider. And even thinking about it for myself.
Bill Gasiamis 1:13:11
That’s the other interesting part of this, you know, is that for me, it’s a really important conversation, because I need to consider the possibilities of how this might support me. That’s one thing I haven’t asked you is, is it a procedure that can be done? For anybody who’s had a neurological injury? Does it have to be a stroke survivor? Does it have to be ischemic stroke or hemorrhagic stroke? Do you know anything about that?
Andrew Stopps 1:13:38
Yes, the type of stroke, it doesn’t matter if there’s inflammation caused by it, and it’s going to help with other brain injuries. I think they do do other brain injuries if you’ve got inflammation. This drug’s going to help.
Bill Gasiamis 1:13:56
Yeah. Excellent, man. Congratulations. Thank you for coming on and sharing that I appreciate it. And I wish you a great recovery and continued success. Well done.
Andrew Stopps 1:14:10
Thank you very much. Thank you. It’s been really good talking to you.
Bill Gasiamis 1:14:13
Well, thanks for joining us on today’s episode. This was an episode that I’ve been wanting to do for a very long time. Many people have contacted me and asked if I knew anybody or had understood what it’s like to receive Etanercept. Now that you’ve listened to the interview, I encourage you to do your research, make up your mind, and understand fully what it is that you might need to go through to consider the possibility of requesting the procedure from Dr. Tobinick.
Bill Gasiamis 1:14:54
This is not a paid endorsement of the clinic. I do not suggest that anybody listens to any of this information on the podcast and takes my advice or Andrews’s advice. Please do your research and investigation and make your own decisions. And hopefully what this has done is just given you some things to consider. And some things to understand that you didn’t understand before.
Bill Gasiamis 1:15:23
So, for everybody, listening, if you liked this episode, please do hit the like button, share the episode, let other people know about it, and get the conversation started, because that’s what we need more of, we need to hear more about the solutions that are possible for stroke survivors. And this might make a difference to somebody else’s recovery. If they can find this interview.
Bill Gasiamis 1:15:50
And listen to it, it might improve their quality of life, it might allow them to get back to work, it may allow them to get through recovery a little bit better. Thanks to everybody who always tunes in, listens leaves comments, and reviews, the podcast lives and thrives because of the reviews that people leave, whether it’s on Spotify or iTunes. So if you’d like to leave a review, please do go ahead and leave a review and some words about what the show means to you.
Bill Gasiamis 1:16:23
The show is growing, I get feedback from people every single week about what the show means to them what it was like when they discovered the show, how it made a difference in their recovery, how they don’t feel alone, and how they feel understood and feel like they found the community. And that’s exactly what I was I was trying to achieve. So I hope you enjoyed this episode. And I look forward to seeing you on the next episode. And I am truly grateful and truly and deeply appreciate everybody who listens and interacts and contacts me and leaves comments. Thank you.
Intro 1:17:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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 in all content on this website at any linked blog, podcast, or video material control.
Intro 1:17:24
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical 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.
Intro 1:17:48
Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:18:11
If you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:18:27
We did 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Etanercept for Stroke Recovery – Andrew Stopps appeared first on Recovery After Stroke.
1 hr 20 min
March 18, 2024 Monica’s Story – Brain AVM Recovery – Monica Azevedo
Comprehensive Guide to Brain Arteriovenous Malformation (AVM) Recovery and Outlook
Understanding Brain Arteriovenous Malformation (AVM)
Brain Arteriovenous Malformation (AVM) is a rare condition characterized by abnormal connections between arteries and veins within the brain, bypassing the normal capillary system. This condition poses unique challenges due to its location in a critical organ like the brain, leading to potential complications such as hemorrhage, seizures, and neurological deficits.
Initial Stages of Brain AVM Recovery
Post-Treatment Care for Brain AVM
Following treatment for brain AVM, meticulous post-treatment care becomes paramount. Patients must strictly adhere to medical recommendations, including prescribed medications, lifestyle modifications, and regular follow-up appointments to monitor recovery progress and address any emerging issues promptly.
Physical Rehabilitation for Brain AVM Patients
Physical therapy plays a crucial role in aiding brain AVM patients during recovery. Rehabilitation programs tailored to the specific needs of each patient focus on restoring mobility, coordination, and strength. These programs are designed to address any neurological deficits and improve overall functional abilities.
Factors Influencing Brain AVM Recovery
Location and Size of Brain AVM
The location and size of a brain AVM significantly influence recovery outcomes. AVMs situated in critical areas of the brain may present greater challenges and require specialized treatment approaches to mitigate risks and optimize recovery.
Treatment Modalities for Brain AVM
The choice of treatment modality for brain AVM, whether it’s surgical resection, embolization, or radiosurgery, plays a pivotal role in determining recovery prospects. Each treatment option carries its own set of risks and benefits, and the selection depends on factors such as the size, location, and characteristics of the brain AVM, as well as the patient’s overall health and preferences.
Long-Term Outlook and Prognosis for Brain AVM Patients
Risk of Recurrence in Brain AVM Recovery
Despite successful treatment, there remains a risk of recurrence in brain AVM cases. Regular monitoring through imaging studies is essential to detect any signs of recurrence early and intervene promptly to prevent potential complications.
Quality of Life After Brain AVM Recovery
The quality of life post-treatment for brain AVM patients varies depending on various factors, including the success of treatment, the extent of neurological deficits, and overall functional recovery. Many individuals can resume their normal activities with minimal limitations, while others may require ongoing support and rehabilitation to manage persistent symptoms and optimize their quality of life.
Importance of Psychological Support in Brain AVM Recovery
In addition to physical rehabilitation, psychological support services such as counseling and support groups play a vital role in brain AVM recovery. Coping with the emotional and psychological impact of living with a brain AVM and undergoing treatment requires comprehensive support to address anxiety, depression, and other mental health challenges.
Conclusion: Optimizing Brain AVM Recovery
In conclusion, optimizing recovery and outlook for individuals with brain Arteriovenous Malformation (AVM) necessitates a multidisciplinary approach that addresses the unique challenges posed by this condition. By prioritizing post-treatment care, physical rehabilitation, and psychological support, brain AVM patients can achieve optimal recovery outcomes and lead fulfilling lives post-diagnosis and treatment.
The Interview
Monica Azevedo was 29 when she experienced a brain hemorrhage because of an AVM that required gamma knife surgery to resolve.
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Highlights
00:37 Introduction
00:59 The Brain AVM and symptoms
08:53 Deficits after the brain AVM
11:49 Brain AVM recovery with aphasia and cognitive difficulties
17:28 The importance of emotional and mental recovery
26:44 Transforming life after a stroke
33:36 Being at the right place at the right time to have a stroke
44:44 Career growth, overcoming obstacles, and finding gratitude
51:15 Bill’s lessons and hindsight from the stroke
56:44 The hardest thing about stroke for Monica Azevedo
59:28 What Monica Azevedo learned from her stroke
1:06:28 The importance of having a proper diet
Transcript:
Bill Gasiamis 0:00
Hello, everybody. My book about stroke recovery tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery. Where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.
Bill Gasiamis 0:22
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more to find out more and to get your copy, go to recoveryafterstroke.com/book.
Introduction – Monica Azevedo
Bill Gasiamis 0:37
This is episode 296. My guest today is on the road to recovery after a brain AVM bled into her brain when she was age, just 29 Monica as Aveda. Welcome to the podcast.
Monica Azevedo 0:51
Thank you. Thanks for having
Bill Gasiamis 0:55
Tell me a little bit about what happened to you.
The Brain AVM and symptoms
Monica Azevedo 0:59
Yeah, so long story short, I had a stroke on February 2 of last year 2023. And it changed my life and I’m doing a lot better now. But I’m still recovering. So essentially I had a hemorrhage stroke, where I had a bleed in my brain. And we found out it was because of an AVM in the brain that ruptured. So yeah, I’m not sure how far back and how many details.
Bill Gasiamis 2:03
Let me guide you don’t worry about it. So you have an AVM you find out the first time when it bleeds. Looking back now did you have any symptoms? Any idea that maybe there was something not right, something a bit weird about your head? Did you get strange headaches before? Did you have any inkling whatsoever that something was a little bit off?
Monica Azevedo 2:28
Not at all, complete shock. And it’s funny because I’ve had a couple of concussions in high school. And that didn’t do anything or at least, you know, let me know that I had potentially this AVM in my brain. So I consider myself lucky because all the symptoms were fairly, you know, quick and I got help fairly quickly as well.
Monica Azevedo 3:07
So I was working a lot and I had just finished my shift, it was a Thursday. And I left work, I went to grab my car. And I went I pulled up in front of the office, my boss and I were unloading my car because we just had done it at a trade show for the company. And I said goodbye and hopped into my car.
Monica Azevedo 3:48
As soon as I pulled out and started driving I got this sudden, headache, very sharp pain at the very front of my head and I was like whoa, like kind of taken aback because this kind of came out of nowhere. And then within seconds, my vision becomes blurry.
Monica Azevedo 4:14
And I figured okay, this isn’t good. So I think to myself, pull over immediately. I put all my hazard lights on I put my car in park and funny enough I’m from Toronto, and there are billboards up around and I remember always reading this one that had the acronym FAST. I think it’s like if your face is drooping. A like your arms and S for speech and then time to call.
Monica Azevedo 4:57
So I instantly thought to myself can you raise your arms and I couldn’t even like, raise my arms more than halfway. So I knew something like I needed help. So the first thing I did was think I was going to call my boss because he’s probably the one person who can get to me the quickest.
Monica Azevedo 5:25
And figure out what’s going on, I call him. I said, Hey, I’m not feeling good please come get me. And then, you know, from here on now, this is what I’ve been told, because as soon as I called him, he said he was coming. I blacked out. And then I remember coming to again for a second and I see him in my vehicle calling I guess, 911. And then blackout again. And I don’t remember anything for two weeks.
Monica Azevedo 6:04
I was in the ICU, they found out that I had a bleed in the brain almost immediately. And yeah, I had a breathing tube. And I, apparently had thrown up all over myself when this first had happened. And yeah, it was I was rushed to the hospital. So I was I’m very, very grateful that he was there to jump in and call 911 for me. Because, again, the symptoms were so sudden and so powerful. And it happened so fast. I barely had time to react. Yeah.
Bill Gasiamis 7:03
You’re you’ve got sort of this two-week period of time where everything’s lost, I imagine you would have been in some kind of an induced coma that would have been trying to stabilize the bleed, trying to sort it out, etc. Did you have family notified Was anyone by your side during that time to remember who was there when you woke up?
Monica Azevedo 7:26
Yeah, so my boss said, his name is Jamie. And he called, I believe, my parents and one of my girlfriends. And it was the two numbers he had, I think, and I’m not sure maybe he called my partner but he called who he could. And so, one of my good friends, Tara, she was the first one to get to the hospital and see me and she thought, you know, okay, well, this is a little bit more serious than I thought.
Monica Azevedo 8:14
She told my parents like, no, like, you need to come to the hospital. So all my close girlfriends, my parents, my brother. You know, bless their hearts. I have a great support team, and they’re all there. And yeah, I guess it’s still not clear to me exactly what had happened. You know, during when I was in ICU.
Bill Gasiamis 8:47
Are they all living locally, and are they all near you?
Monica Azevedo 8:51
Yeah, they are.
Deficits after the brain AVM
Bill Gasiamis 8:53
And it’s been 12 months, the anniversary of this time has just passed, right? So in those 12 months, what did you have to overcome? What deficits Did you wake up with after the surgery? After the hospitalization?
Monica Azevedo 9:10
Yeah, so I had like, a tube out of my head. So we ended up putting a shunt in because, during my hospital stay, I was at the hospital for about three to half weeks in total. I moved into a rehab center which helped a lot but during my hospital stay I guess they were trying to drain or let my body drain the fluid out of my brain on its own, but I couldn’t and whenever they I guess tried to let me do it on my own.
Monica Azevedo 9:56
Like those were times I kind of recall some of them. And some of them I don’t. But like, I would talk crazy like I was not making sense. The stories I hear from my family and friends are pretty funny. Scary, but funny. Now that I look back at it.
Bill Gasiamis 10:22
Did you have problems walking or using any side of your body or anything like that?
Monica Azevedo 10:26
The right side of my body was quite numb, tingling, and hard to use, I had to walk and learn how to walk again, so I used one of those walkers. And I had like my shoulders up to my ears I was so frigid. It affected my left eye. So I have what you call a strabismus or lazy eye.
Monica Azevedo 10:53
And it’s also affected the pupil. So the brain is amazing. But at first, it was like I had a double vision I am I couldn’t see anything, everything was messy. And then I just kind of adapt because essentially, what the brain is trying to do is, is create like, there’s two images, and they’re trying to blend those images. So it’s just one.
Monica Azevedo 11:31
So, I can see a lot better. But I’ve had to adapt. I had to learn how to walk again, I had to kind of gain strength on my right side. So physiotherapy was a big help.
Stroke recovery with aphasia and cognitive difficulties
Bill Gasiamis 11:49
How are you functioning verbally? And how you’re thinking? My assumption is, I’ve never met you before. So I’m assuming that everything is the way it’s always been. But are you having any difficulty with developing thoughts, finishing sentences, or starting a conversation? Do you have any of those dramas, things that are different than the way that you used to communicate before?
Monica Azevedo 12:14
Um, in the beginning, it was fairly difficult. I was kind of lost for words. But I’ve improved quite a lot. I have little trouble with short-term memory. But you know, I’m trying to work on my vocabulary. Again, I’m trying to talk more, read more, and challenge myself. So, you know, I’ve seen a couple of speech therapists. And luckily, that hasn’t been the case for me. I haven’t had a deficit in that regard.
Bill Gasiamis 12:59
And how about your energy levels? What about the way that you feel throughout the day? How energetic you can be how many things you can get done? How was that? These days? A
Monica Azevedo 13:11
a lot, a lot better now, a lot better now. So something that I struggled I was a lot mentally. My mental health was I was in a dark place for sure. Physically, now I gained 40 pounds. And within six months, I had to shave my head. So because they shaved half of my head for the shunt and this drain there they put in I had a little bit of an identity crisis because I didn’t recognize who I was in the mirror. Like I’ve gained weight my eyes weird to me. I’m I’ve shaved my head. And I forgot the original question. I don’t know where I’m going with this.
Bill Gasiamis 14:16
It was about it was about like how else you’ve been impacted? And you’ve answered the question beautifully said so fine. Yes, I was gonna say about your mental health. So were you somebody that perhaps had mental health challenges in the past, for example, my major, A minor, you don’t have to talk about any of this stuff. If you’re not comfortable, major or minor in that. Did you have baby anxiety or anything like that? Or was this all-new, or onset after your brain injury after this traumatic injury?
Monica Azevedo 14:48
I’ve always dealt with things with anxiety. So that wasn’t, you know, new for me, but yeah, a lot of it was new to me, I guess I guess. Like I have never, you know, experienced depression the way that I did last year. When I think back, I get emotional sometimes. Because I think I’ve come so far, you know, I’m, I’m doing so well. Considering I had a stroke a year ago, and I’m damn proud of myself, but it was hard.
Intro 15:42
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 recover? What things should I avoid? In case I make matters worse, doctors will explain things that, you’ve never had a stroke before, and you probably don’t know what questions to ask.
Intro 16:07
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. 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. Download the guide. It’s free.
Monica Azevedo 16:45
It’s really hard. And I think mentally is where I had the biggest challenge because and you know, because physically I couldn’t do the things I wanted to do. And whatnot.
Bill Gasiamis 17:03
Physically is where the effort goes, people see that immediately. They see you can’t walk, and they put you into therapy and you’re supposed to improve or you’re walking. And I think it’s a really important part of recovery. And then if you can regain some of your movement that might support your mental health a little bit, your emotional health.
The importance of emotional and mental recovery
Bill Gasiamis 17:28
But then the Emotional Health and Mental Health still require a lot of time and effort as well, just like the physical recovery, but very rarely do as a medical professional, you should go into six months of counseling or six months of therapy, they don’t do that unless somebody is proactive, says that to you. And then you have the idea that maybe psychological counseling, or emotional counseling is something that you need to do.
Bill Gasiamis 17:58
But a lot of stroke survivors don’t go down that path. They don’t think about it. Because they also look at the physical side of it. And then they go, Well, if only I could walk or if only I could use my arm or and then they put all their energy and focus into that, which makes sense. It’s logical. But strokes are a three-pronged recovery, you can’t just recover the physical and not pay attention to the emotional and then not pay attention to the mental. Because your, your thinking gets clouded. I know for me, it got clouded.
Bill Gasiamis 18:30
I’m thinking thoughts I had never thought before. Which, on reflection, it all makes complete sense. It’s logical that somebody who was perfectly healthy for 37 years, and now seems not to be and doesn’t know what the future holds, is going to have new thoughts about life and new thoughts about the world and new thoughts about work and the family and what it means to be alive and all that stuff.
Bill Gasiamis 18:57
So it’s pretty standard and obvious that you might initially after the stroke, have depressive type of thoughts and feel a sense of doom and gloom and and then get depressed, right? It’s pretty logical because something bad has happened. The thing about it is to help you to help you get through that is to observe it and to try and understand why you’re thinking those thoughts.
Bill Gasiamis 19:24
And to come to terms with the fact that you’re thinking of them and that it’s okay that you’re thinking of them and under the circumstances is understandable that you might be thinking of them. And then it’s about how you tried and transform those thoughts and get a little bit of what is it. I would say a little bit of control back because I felt out of control when it happened to me.
Bill Gasiamis 19:48
Everybody else was in control of my life. The doctors. You know the bleed was in control of my life. I mean, maybe God was in control of it. I had no idea what was happening, I was just along for the ride. But then I start making some small decisions and take back a little bit of their control where I can. And it’s usually in areas like, like what I’m going to address like, what is it that I’m going to address?
Bill Gasiamis 20:14
Like, Ah, okay, I’m going to address my mental health, I’m gonna go see a counselor, I am going to address my emotional problem, where I’m crying all the time, and I don’t know why. And then it’s like, I have I had also put on weight. So okay, I’m going to address my weight issue. And we’re going to stop consuming sodas or stop consuming sugar, for example.
Bill Gasiamis 20:38
And then as you do that, even though other things are out of your control, what happens is you take a little bit of control, and then you start to feel better about the fact that you’re playing an active role in keeping yourself healthier and avoiding another incident. But of course, I know that with ABMS often, the situation doesn’t just resolve when you get sent home, the AVM is still there often if they haven’t operated immediately.
Bill Gasiamis 21:08
So for me, it was there for three years almost after the first bleed, and played three times in total. And then we had surgery. So the first year I was in the kind of feeling better mode, things are getting better, but there’s still this unresolved matter. What situation are you in with your AVM?
Monica Azevedo 21:32
Yeah, so I still have my AVM which kind of scares me a little bit because there’s always that risk factor. Right, that is a potential re-rupture. And so yeah, it’s inoperable because it’s located at the back of the brain, but like, the way they describe it’s almost in the center of the brain because it’s very deep inside would be difficult for them to operate.
Monica Azevedo 22:09
So we did the gamma knife radiation treatment that the students experienced. And that was done about nine months ago. I have my MRI, then of this month, finally, to see how she’s doing. I call it Felicia, because it’s like, you know, Bye, Felicia. Like, you’re not welcome here anymore. Like, please, go.
Bill Gasiamis 22:51
Humor is so important.
Monica Azevedo 22:54
Yeah. So try to keep things light, right? I’m hoping for good news.
Bill Gasiamis 23:03
Okay, so a friend of mine, who I went to school with, who I harassed for his entire life. I’ve known him for 44 years. He went to school with me, I did the best I could to keep him out of studying to keep him out of doing well, to get him to be an idiot like me as much as possible, you know. And he went to university and I didn’t because University wasn’t for me, I had learned everything by the time I was in year nine or something like that.
Bill Gasiamis 23:40
So he went to university and became a radiographer. And the type of guy who when you go to a hospital and get a scan of your head, he’s the type of guy that does those scans. So when I was unwell, he was at the hospital that I was going to, and he was the guy that was scanning my head, and he would see me at every appointment. And I’ve known this guy my entire life, we’ve kept in touch, like since school finished.
Bill Gasiamis 24:08
And we went through this together and he would speak to my wife and he would reassure us but for three years, you know, he was on the case for me. And then he was the person who introduced me to my neurosurgeon who eventually did the operation. And then he was there. When I was recovering. He was all over the place like he was just amazing to have around is awesome.
Bill Gasiamis 24:10
And then I think 12 months ago, roughly about 12 months ago, a similar time to you. His daughter had an AVM she’s 17 years old and bleeding in the brain. Really difficult spot to get to the draining of the fluid. I go and visit him. I’m in the ICU with him. She’s on ventilators the whole lot. And now she’s up and about and she has some left side deficits that are kind of still impacting her, but it was touch and go just like you.
Bill Gasiamis 25:06
And she had the gamma knife surgery as well, the procedure. And what I understood that the gamma knife does is that it kind of zaps that area where the AVM exists. And it alters the DNA of the AVM. And the whole purpose of it is once it alters that DNA, it kind of stops it from working properly, and it shrivels it up. And then Felicia is no more.
Bill Gasiamis 25:35
And that’s the time that they’re in now. They’re also in that waiting zone, they’re waiting for the next MRI to have a look and see what happens. Hopefully, the results are in their favor and then they move on and go to the next stage. But it’s a difficult time for everybody who’s had an AVM to go through that. And I appreciate what you’re going through.
Bill Gasiamis 26:00
It’s just so ridiculously crazy that I had to go through what I went through, my friend had to help me, and his daughter had to go through that. And now together we’re going through this. And we can empathize with people who have had a stroke bit from a brain injury, bit from an AVM break from a blood clot. It’s a lot of waiting around and being patient, I imagine that it’s not something that you had practiced too much before being this patient about something that you’re that sort of motivated to get the right outcome for how is that new experience to deal with?
Transforming life after a brain AVM
Bill Gasiamis 26:44
How do you stay calm and relaxed and chilled the way you are? Because you appear very level-headed. You know, you’ve contacted me to be on the show. You’re presenting yourself as calm and calculated. Are you? Is that a facade? Because people listening who are going through what we’ve been through will be curious, like, are you not human? How do you do that? How do you live with that?
Monica Azevedo 27:16
I am cool, calm, and collected. And I’m kind of an introvert. But I know how to turn it on if I have to. Yeah, I’ve just always kind of been like the quiet more reserved, and observe-the-situation type of gal and yeah, it’s training yourself to have more positive self-talk as well, right? It’s so easy for me and for I’m sure anybody to kind of look at themselves and easily say, Oh, I don’t like my hair today.
Monica Azevedo 27:29
Or oh, I don’t like this outfit on me or, whatever it is, right? But yet, it’s not easy for us to tell ourselves. I am. You know, I’m smart. I’m courageous. I’m creative. And the list goes on. Right. So I just tried to practice gratitude. I tried to give, say daily affirmations. So sometimes it’ll be different every week. And yeah, and I just kind of say to myself, I’ve also journaled too.
Monica Azevedo 28:49
I think that’s helped quite a bit with processing this, but um, patients patients. It’s something that I’ve had to learn. I think you know, I know like you’re the I think the title of your book is like it stroke was the best thing that’s ever happened to me something along those lines and it’s interesting to say that only now I can say that yeah, I think I can agree because it you know, I quit some really poor habits that weren’t serving me anymore.
Monica Azevedo 29:33
I have more confidence in myself now and I truly see how short life can ultimately be I want to enjoy it and I don’t want to be miserable. I want to be happy and not allow things to bother me as much as they once had before.
Bill Gasiamis 30:00
Yeah, I love that. See, that’s the thing about my book title. It’s unexpected, it caught me off guard by surprise, as if the worst thing that ever happened to me, could become the best thing that ever happened to me, let’s face it. Now, I know people will say that some things are way worse than stroke that they’ve had happened to them.
Bill Gasiamis 30:23
Therefore, stroke doesn’t even mention it. So it just depends on your life, and what your experiences have been so far, and all that type of thing. And it just depends on how well I considered myself pretty dumb before the stroke. And I say that in the most caring and loving possible way.
Bill Gasiamis 30:43
Because I was not wise to the world, I had a way of doing things that was, in my mind, the only way of doing things and it was so not aligned with my way of being it was just like somebody else’s rules, I was implementing somebody else’s strategies and, and things and I was getting a lot of pushback, and I didn’t like it.
Bill Gasiamis 31:08
And it was really difficult to be myself. And then I’ve had this stroke, and then it stops and pauses everything. And I’ve got to change everything because I’m a completely different version of myself. And I need new tools. So I go and seek them out. I find tools that serve me are not difficult to implement and are enjoyable to do.
Bill Gasiamis 31:31
And I get a lot back from them, like gratitude, and like public speaking and all that kind of stuff. And then I’m like, I never would have discovered this stuff, if it wasn’t for all this health scare that I experienced and all the challenges that I’m facing, and I have to overcome. So its growth has happened, it had to get to this dark place, it had to get to rock bottom.
Bill Gasiamis 32:00
But then, it was just growth because I knew that I didn’t want to get to rock bottom ever again. Which meant that I couldn’t go about life the way I was going about life before you just if I did, if I did, that would get me the wrong outcome. And I’m not particularly happy with that outcome.
Bill Gasiamis 32:19
And now that I’ve had a taste of this new version, even though I’m living with deficits, even though my left side has been in pain for about three or four days now, even though you know, it’s bugging me, and I’m noticing it more and my balance is off. I have a podcast, I’ve met all these people, and I’m doing a book launch in a few weeks. It’s like, how can it not be the best thing that happened to me?
Bill Gasiamis 32:47
And I expect people will not be at that stage yet. And I’m perfectly comfortable with that. What I’m doing is trying to say to you, like if strokes, the worst thing that happened to you? How can you despite that, transform it regardless of how bad your deficits are, regardless of how bad your vision is, your memories, or that kind of stuff, how can you transform it into something that enables you to experience a part of life you had never experienced before? That’s amazing. Like you nearly died. So pretend you’re already dead, like fuck it, like and just go for it and do something that the old you who was supposedly alive, never would have done.
Being at the right place at the right time to have a stroke
Monica Azevedo 33:36
Amen. Yeah. 100%. Because it’s kind of strange to say, to say that, you know, you almost didn’t make it because, to me, I’m thinking like, I’m here. What do you mean, and I didn’t make it, but it’s true if I hadn’t gotten the help right away, like, who knows what the outcome would have been if you know, I say I had a guardian angel watching me because everything almost fell in place.
Monica Azevedo 34:14
Almost too perfect to help my situation. It was like it was it was gonna happen regardless. But you know, like, again, my my, my symptoms happen quickly and continuously and I didn’t have a moment to react right? Where some people I know you know, started stirring in the morning and then they go throughout the whole day and they may be been having this mini-stroke throughout the day and they weren’t even aware of it and it caused so much damage.
Monica Azevedo 34:53
And again, depending on where the AVM is located on the brain, it affects different parts of your body. It’s just, that there’s so much depth to all of this and everyone’s experience is not like any other. You know, I tried to seek out, you know, anyone else who had their eye affected from stroke, or AVM or what have you and, and it’s I find it so difficult to find anyone else who had an issue with their eye specifically, you know, I’ve had people I could relate with the shunt and, and some parts of my experience.
Bill Gasiamis 35:40
Well, on my Instagram page, there are a ton of people who have had me make posts specifically about vision, and people have responded. So if you go there and you scroll through, and you see the posts that are about vision, you’ll see there are people there. And anyway, if you wanted me to I could ask, and I can let the people following on Instagram know that Monica wants to connect with some people who have had vision problems after a stroke. Would you guys be willing to connect? And let me tell you there’s gonna be a few.
Monica Azevedo 36:17
Yeah, yeah. I would love that. I would, I would love to, you know, connect with anyone else who? Yeah, cuz I feel like that’s kind of like the missing piece a little bit up. I just haven’t come across anyone who talked about their eye being affected.
Bill Gasiamis 36:41
I was just gonna say how much does it bug you that your eye is affected in that way? What does it stop you from doing? Or what does it do to you?
Monica Azevedo 36:56
Now it doesn’t stop me from doing anything. So that’s great. It’s been an adjustment. It caused a lot of headaches, balance issues, and almost not knowing where you are in space, almost. It’s just a weird experience. And confidence-wise, you know, just looking at my reflection in a mirror and not seeing my eyes, you know, being the way they used to be.
Monica Azevedo 37:34
And yeah, so I was supposed to have the eye surgery. strabismus surgery. So it’s been going to help kind of align my eyes again. So the physical part of it will be fixed. But the visit again because my pupil was affected. I don’t know if it’s gonna fix the vision aspect. But we’ll see I have it rescheduled for next month. So I have a lot of things coming up, right, like the MRI, and eye surgery. And we’ll see what the next steps are for me.
Bill Gasiamis 38:19
Do you need to go and grab some tissues? Do you need to get some water? You seem like you’re a little. bit runny? Yeah,
Monica Azevedo 38:32
I get emotional sily. So I I’ll tear up here and there.
Bill Gasiamis 38:39
Yeah. Understand I’ve been there. Most people listening have been there. So have you been to a neuroophthalmologist, or you’re going to just the regular eye doctor, a neuroophthalmologist usually deals with eye challenges related to neurological issues. Who have you been seeing for your eye? What kind of a?
Monica Azevedo 39:05
Yeah, so I was I saw a couple of ophthalmologists. This specific ophthalmologist focuses on strabismus. So a lot of these patients are typically children. But he said he’s had, you know, a couple of a few adults in his career and, and, and it was due to like a neural neurological issue. So, yeah, he’s confident that he can help me and because I made it very clear that you know, I don’t want to go into this surgery if you don’t think there’s going to be a significant difference or improvement.
Monica Azevedo 39:58
Because that like I think I’ve adapted to what it is now. And I’m not, you know, half-b, but I can deal with it. You know, like the headaches, the daily headaches are gone. I balance is great. I’m back to the gym. I’m, you know, I’m doing all the things that I love doing again. So if it’s not going to improve what I’m at right now, like I, this is the baseline. I’mbackwardg backwards. I’m going forward.
Bill Gasiamis 40:44
That makes sense. 12 months just passed. Is thamonthsst 12 months? Was it? Anniversary? Was it a celebration? Was it a time of reflection? Did you either evputsort of did it into your mind? How did you guys do that?
Monica Azevedo 41:04
Yeah, you know, the first anniversary was definitely on my mind, I did reflect. And it was very emotional. And my girlfriend, you know, had had us over for dinner. We had low dinner together and kind of celebrated, you know, recovery for the last year. And then yeah, it was, it was a special day. And I just want to kind of create new and better memories for that day, because, mind you before the stroke, February 2 never meant anything to me. Okay, now, like, well, kind of needs something, right? So you make your what it is right?
Bill Gasiamis 41:56
So weird that we do that. I mean, if a calendar didn’t exist, we wouldn’t have a clue that a year had passed Exactly. That it was that they were just so strange. You know, we’ve been, I think we’ve been trained to mark anniversaries for some reason. Like, whether it’s, you know, wedding or getting together anniversaries, or whether it’s birthday anniversaries, or whether it’s the anniversary of somebody passing or whatever.
Bill Gasiamis 42:25
And, you know, we’ve been trained to remember that, this day, 12 months ago, this thing happened. And like, we now have to remember it for some reason and do something about it. And I feel a bit weird about marking anniversaries, but in a positive way, like you’re trying to bring, like a positive spin on it and say.
Bill Gasiamis 42:50
Well, if I am going to mark the 12-month anniversary, I’m going to mark it and say, look how far I’ve come, or this is what I’ve learned, or this is how I’ve grown, or this is how I’m better or different or whatever rather than re-traumatizing myself with what happened on that day. And then, you know, it being something that I have to get over again and over common, I don’t know. I do wonder why it is that humans have to mark anniversaries.
Monica Azevedo 43:34
Yeah, it’s interesting. You know, because you can’t expect everyone to remember, you know, this day, this happened to me. And why do we do it?
Bill Gasiamis 43:51
And why 12 months and not 13 or 11?
Monica Azevedo 43:54
Yeah. Because, again, it’s the calendar year, right? The calendar years for 12 months? Yeah. I guess it’s something it’s something to, you know, you can have a great debate on because you know, why celebrate your birthday every year, right? It’s because you get older, right? But it’s something I think of positively. No, it’s a way to celebrate and create new memories. And if you want to celebrate the damn thing, go ahead, you know, and if you don’t, you know, it’s your choice at the end of the day.
Bill Gasiamis 44:30
Yeah, I love what your friend did. For you. That’s a really lovely thing to do to sort of bring you guys together and make you feel cared for and looked after and thought of.
Career growth, overcoming obstacles, and finding gratitude
Monica Azevedo 44:44
Yeah, I have very special friends. They’re very, very close and dear to my heart. I’ve known them forever, basically, and my partner and my pair of friends and my family, just everyone close to me, has been so supportive and so amazing. And I truly, you know, recognize that friends and family are so important. And I, I anytime that I have, you know, again, because I’m an introvert, I like some alone time, because that’s how I recharge my batteries. But otherwise, my free is being spent with my friends, and family, my career that I’m trying to build.
Bill Gasiamis 45:39
Yeah. Tell me about your career. What are you trying to build?
Monica Azevedo 45:47
I don’t know if I want to go into it in depth, but I’ve been working for this company. And they’ve been so supportive during this entire journey. Because, you know, when the show happened, I wasn’t working for a little bit there. But they, you know, they were like, Nope, we understand we see what’s going on, come back when you’re ready. And I came part-time a part-time basis, to kind of ease my way back into it.
Monica Azevedo 46:24
I did that in August, so six later. Anen I liworkedlowly work my full-time full time. And, it’s nice to, you know, to have a sense of routine back again, you know, and wake up before I would wake up for work and be like, Oh, I hate this, I was so miserable. But now like, Oh, I get to wake up and I get to go to work. And then I get to go to the gym after and do all these other things. And, you know, make the best of it. Some days are harder than others it changed my perspective on a lot of things.
Bill Gasiamis 47:15
You were like every other normal person who hates waking up in the morning and going to damn work.
Monica Azevedo 47:22
Yeah, you know? I mean, if you’re waking up miserable going to work, then maybe you need to change your career.
Bill Gasiamis 47:31
Yeah, for sure. That was me. I mean, going to work. miserable. As my boss, I was creating two my pain and suffering because I was like I said, I was quite thick and dumb about the way I went about things. And I remember whinging and moaning about how hard it was to be me and to run my business and to get the guys to do what I needed them to do.
Bill Gasiamis 47:56
And my customers needed me to be there all the time. And if they didn’t see me, they wouldn’t want to work with me. And it was all these bullshit stories that are created in my head about why I couldn’t grow my business and why I couldn’t do this. And I couldn’t do that. My office, I didn’t have one home, I was working from home.
Bill Gasiamis 48:17
And who would have known that you know, 12 years later, working from home is the thing?to do. Right? And I was just so, so oblivious to the fact that I was working from home, but it was working. I thought that I needed to work from some other location to make our work better or some ridiculous thing. And then and then I found myself working from my hospital bed.
Bill Gasiamis the 48:46
So first time the I was in the hospital for seals, I got a laptop, I got a photo of the laptop on the food tray broughtthey bring out. And I’m sending quotes, sending invoices, receiving emailing, email, emailing my clients, My guys are going to work. They’re doing the work the way that they need to do it. The clients are happy the clients are paying. Everyone steps up. It’s like, what just happened?
Bill Gasiamis 49:16
I went literally from one week before where everything was a problem. I was whinging to my wife about it. Everything was so hard. Because the business was prosperous and working well, and we were making money and I was busy. What I wasn’t doing was delegating putting new people on and taking some of the pressure off me. I was just taking it all on board.
Bill Gasiamis 49:39
And then here I am, literally a week later with a brain injury and I’m working from my hospital bed. It just blew all of my preconceived ideas and all of my thoughts about what success looks like. It just blew that blew it out of the water and it was the most obvious that would hit Me, harder than the stroke hit me the blood in the brain hit me when I was in the hospital, probably on day three or four with my laptop and working away, I just couldn’t believe it.
Bill Gasiamis 50:11
And that was what sort of started this whole turn for the better this growth, this opportunity to sort of see things differently, to reach out to new people to learn new skills, new ways of thinking, new ways of applying myself. It was just, it’s just crazy that, that that’s how I got there, right. So my career became something that I got to do. And I’ve got to be at work, and I got to meet new clients, and I got to find new ways to solve problems. And then gratitude kicks in and it’s like, wow, look at me, like, this is so cool. And I can relate to what you’re saying a lot.
Monica Azevedo 50:51
Yeah, 100%. And, you know, it seems like you’re doing great, you know, after having, AVM ruptured three times and then have to go through surgery. And I couldn’t imagine what that is like, you know, once is enough.
Bill’s lessons and hindsight from the stroke
Bill Gasiamis 51:14
It is but it was easier. Monica, the reason why it was easier was because I had learned the lesson quickly, early on. And as I was healing and getting better, the next time it bled. What I had to do was overcome my illness, my brain issues, you know, with the blood in there, and all the stuff that was happening in there. Once I overcame that again and sort of started to get healthier and get better. Those lessons were still there, and I was able to capitalize on them again.
Bill Gasiamis 51:47
So the second time I capitalized on it again. And then the third time, it was like, Okay, I’ve had 18 months, I had nearly I think it was two and a half years by then of two bleeds recovery, and then played and then brain surgery. But I had two and a half years of putting new things into place new strategies, new brand procedures, and new ways of living my life. So it was kind of easier because I had new tools already developed. And that was what was good about it.
Monica Azevedo 52:26
Yeah, I’m sure that helped a lot because it still doesn’t make it easy.
Bill Gasiamis 52:34
It’s a bloody setback, blood-brain ain bled again. And now you have to have brain surgery. Now you have to learn how to walk. It’s a setback. And it takes a long time. And that’s one of the things I’m trying to demonstrate I don’t want to gloss over the fact that it took me more than seven years to get full-time time work, a long time.
Bill Gasiamis 52:55
And in that time, there were a lot of setbacks, a lot of setbacks, and I had thyroid surgery in that time as well. So 18 months after my brain surgery, had thyroid surgery because I had massive growth on one of my thyroid glands. So half of it’s gone. And then the adjustment that that does to your body and the hormones and your recovery from that.
Monica Azevedo 53:20
Yeah, because the AVM is not the only thing For most people I was diagnosed with rheumatoid arthritis, I think in 2019. And that was, you know, the symptoms I had it affected my foot and my knees and I couldn’t walk at one time, it was so inflamed, we had to drain out fluid and fit, find out which biologics work the best for my body.
Monica Azevedo 53:47
And so there’s, of course, you’re dealing with, you know, you’re dealing with recovery after stroke, and this AVM that, you know, may or may be existing in your body, and then you have other health issues to just put on top of that, right. So it’s just, that it can change again, like your perspective, and it provides the tools to better deal with those situations when they come.
Bill Gasiamis 54:23
Do you feel like you’re more resilient than you were? Have you always been resilient? How has your resilience level changed? Or the depth of it how is it sort of developed?
Monica Azevedo 54:40
Yeah, I think it changed since the stroke. To be honest. I was kind of carefree but didnly think about it. Some of my actions I guess, I don’t know, I I’m just far more grateful and just truly see the value of life and I just want to enjoy a while in here.
Bill Gasiamis 55:23
That’s profound. And that’s pretty cool.
Monica Azevedo 55:27
That doesn’t man. Like that’s, that’s all I can ask for. And, I mean, there’s like this quote that says, you know, when you die, people are gonna forget at after six months, and then after a year, like, no one mentions your name and you know, what’s left of you that people are gonna remember, you know, it’s going to be the memories that they have with you. So create those fun, amazing memories of the people you care about. And forget everything else forgetting forget other opinions. Like everyone has one, right?
Monica Azevedo 56:05
Just like assholes.
Monica Azevedo 56:12
Exactly. I’m like, I don’t know if I can swear.
Bill Gasiamis 56:16
A little.
Monica Azevedo 56:18
But, yeah, it’s been a roller coaster. But definitely, I feel like I’ve become stronger and more resilient. And just trying to do my best here.
The hardest thing about stroke for Monica Azevedo
Bill Gasiamis 56:45
That’s it? Why not? What has been the hardest thing about stroke?
Monica Azevedo 56:54
I guess, change in general changes uncomfortable. And I’m, I’ve never been a big fan of. So I think that’s been the hardest, just having to deal with the changes constantly.
Bill Gasiamis 57:15
Change thrust upon you. What is it about change that you’re not comfortable with? Is it just because of your personality? Or is it just because, you know, you like the status quo? What is it with change? Because I feel like I was similar. And now I’m not like, I don’t mind things changing on me now and being different all the time. What do you think was a difficult thing about change for you?
Monica Azevedo 57:44
I think some of the changes that I didn’t expect, like, I didn’t expect to have to shave my head, you know, I had long beautiful blonde hair. And, then I had to shave my hair. I was like, oh, that’s, that’s not a change. I was expecting it, though. That wasn’t something I wanted to do. But like it made the most sense. So I think it has a lot to do witonal cuz I know, change is inevitable and changes. Good. That’s how we grow. And I understand that now. Right? But it’s still uncomfortable sometimes.
Bill Gasiamis 58:36
Yeah. You kind of want it to be a little bit on your terms. Good time to deal with the decision that you’re going to make, for example, and understand how you could sort of be in charge of the change that it’s carrying, rather than it thrust the point it’s like resigning from a job rather than somebody. Second a similar outcome. Both of you end up without a job, but one of them is a decision you become comfortable with and you implement and the other one, someone just sort of pulls the rug out under your feet. And just says, say, you’re out here. What has stroke taught you?
What Monica Azevedo learned from her stroke
Monica Azevedo 59:28
It’s taught me to not take things for granted and just really live life for yourself and not for anyone else. Don’t hesitate. Just do it.
Bill Gasiamis 59:47
Do you reckon you were living your life if not for somebody else, but through the filter of somebody else? I felt like I was doing that. As you know, people had told me how supposed to approach my work, but how was Ire supposed to deal with my family what was going to come next? When you get to that stage, this is what you do. And this is how you do. And, you know, I did everything they told me to do. It never resonated with me much. And then I found myself doing things that they didn’t like doing. And then I stopped doing those things. After all of my health challenges, how were you living your life? Do you feel like it was designed through somebody else’s filter?
Monica Azevedo 1:00:30
To a degree, yes, I think also, I was just very, like, not scared, but I, it took me a lot to take the next step forward, you know, I would hesitate a lot and, and to, you know, I didn’t see myself worth a lot of the times. And I would just keep everything the way it was because, you know, I didn’t want to disturb anyone or anything. And now I’m like, Screw it, like screw that, like, I’m gonna do what I want, you know, like to, you know, there’s a degree of everything, right? You’re not just going to do as you please. Because of course, your actions can affect other people or things around you. But in general, I just feel like, I do things for myself, and I’m proud of that.
Bill Gasiamis 1:01:41
Good. How long have you been with your partner?
Monica Azevedo 1:01:47
It’s going to be almost two years. So I’ve known him for quite some time. But when this all happened, you knowhadn’tven’t even been together for a year. And we live kind of far apart. So when he found out he was out of everyone, lived very close, budidn’tesn’t buy he dropped everything and came to Torontostayed stay with me by my side, during the entire process. It’s posed some challenges to our relationship. But man, we’re in a great place right now. And I am glad to have him. And I’m sure he is just as happy and lucky to have me.
Bill Gasiamis 1:02:44
He better be. Yeah, I asked him that. And because of that, I had a sense that, you know, change all these things do impact relationships. And I don’t know whether they have to impact them for the better or the worse, it doesn’t matter. But I know that there’s an impact.
Bill Gasiamis 1:03:02
Because then this person’s dealing with all the things that you’re dealing with, plus the way that he’s also processing what’s happening in his world because his world has had this upheaval as well. And maybe he’s thinking about things you never thought about before, you know, mortality and ill health and all the stuff you know, so I know that I you know, I challenged my wife a lot because I was a completely different version of myself after the stroke and still am, you, you would recognize my personality and all that stuff.
Bill Gasiamis 1:03:40
That’s all kind of the same. But I think the way I talk, and the way I implement things is completely different. And I became a little bit of a preacher after the stroke, and I busted everyone’s chops for quite a while with, well, you shouldn’t do this. And you shouldn’t do that it was probably terrible to be around for a little while.
Bill Gasiamis 1:04:00
And now I’m kind of calmer about the way I pass on my knowledge to other people, I su, purpose and what they should or shouldn’t be doing. I engage in conversations if somebody asks me, but I tend not to instigate that this is what you should do with your life from now on. Take it from the Almighty Bill. That’s kind of ended.
Monica Azevedo 1:04:24
I’ve had the same approach too I would give my two cents all the time. But no, it’s like they didn’t ask you. So just take a step back, and close your mouth a little bit, right? ht. And if they ask you for your opinion, and your thoughts then you know of course share.
Bill Gasiamis 1:04:48
That’s what I wanted to demonstrate that you can still go about being your new version of yourself and living your new self and your new way of going about life and your nutrients, whatever you want to call it. And you can do without busting the chops of your partner and everybody around you, because, you know, I can’t influence my wife to do anything that I feel like she should do unless she wants to do that.
Bill Gasiamis 1:05:15
And then she asks me, how do I go about that? I can tell her exactly how to go about something. But up until that time, you know, why should she stop consuming the foods that I can’t eat anymore? Like, she doesn’t have to, if she doesn’t want to? Yeah, maybe she is not at that stage in her life and all that type of thing.
Bill Gasiamis 1:05:35
And I used to just give my whole family a hard time about food, you know, and all that type of stuff and what they should or shouldn’t indulge in. And yeah, I’ve become like a, like a cleaner eater and a more mindful eater, and all that type of thing. And my family is still the way they’ve always been. And it’s worked well for some of them because they’re in their 80s.
Bill Gasiamis 1:05:58Somee Some of them are seven-year-olds, and some of them are young, where it doesn’t matter what you eat, so they continue to be themselves and be them. And they are all generally healthy, I can’t say that they are unhealthy, and they are terrible with their eating habits, or any of that none of them are like that. But I felt like I needed to improve everyone’s eating habits.
The importance of having a proper diet in recovery
Monica Azevedo 1:06:24
Yeah food could be our poison, or food can be our medicine. And this is something that I’ve been educating myself about a little bit more recently, too. Because, you know, I, we all enjoy, you know, highly palatable foods, like chips and cookies, and, and all those things, right?. And when it comes to whole foods, like vegetables and meat, and what have you, it doesn’t seem to be the top thing on people’s minds.
Monica Azevedo 1:07:07
Buy, you know, I think food can improve your mood, it can improve your physical health as well. It can help in so many different ways. And I think, yeah, if we just educate ourselves more, we can see that and, maybe it might not have the, you know, instant reaction or effect on you, but down the line, you know, it could cause diabetes, it could cause heart failure, or you know, X, Y, and Zed. So maybe right now, it’s not an issue, but maybe down the road, it will be so yeah, I’m sure that’s a conversation for another day.
Bill Gasiamis 1:07:56
It was, and that was the idea I wanted to because I had experienced ill health, I wanted to avoid my family experiencing ill health. And I just became so urgent, and I had to be obnoxious and rude about it, thinking that I was going to stop them from getting where I got, yeah. Yeah. And it was through that, that I was doing it right.
Bill Gasiamis 1:08:16
But yeah, food is really important after a stroke, you need to avoid certain foods, and you need to add certain foods into your diet, because you can either get in the way of your recovery, or you can support your recovery. And that’s kind of where I was coming from. Well, thankfully, they’re all doing well and they’re all healthy. So, you know, I’ve settled down and I’ve just become an example of that.
Bill Gasiamis 1:08:41
Not that I lead by example in my food, or I don’t eat amazingly. But we will go somewhere and I won’t get sucked into the just have one routine like I won’t get sucked into just have one glass of alcohol routine. I’m very comfortable saying not on a drink. Like there’s no need for me to have one you guys have one and then that makes it don’t let that bother you.
Bill Gasiamis 1:09:07
And that was a conversation for a long time. But it’s not anymore. Now people just know that I don’t drink and what Bill What are you having soda water, and they’ll give me a soda water. And the job’s done. So yeah, so good. people are listening and going through what you and I have been through still in their process just happened to them. What’s a little piece of advice I suppose that you would like to leave them with or encouragement or something positive they’d like to leave them with about the journey that they’re on.
Monica Azevedo 1:09:47
I don’t want to get emotional because I don’t know just just keep trying, man. Like it’s it’s, you know, today A might be your really hard day. So I never thought I would be here, right here right now being this confident in myself. So soon i It was such it was so far fetched. So, you know, my advice is, yeah, just don’t give up. Keep trying. And practice gratitude, practice positive self-talk, you know, write down daily affirmations, whatever you have to do to help that become a regular habit. You know, it takes repetition to create habits. And I think that’s a habit to create positive self-talk. It goes a long way.
Bill Gasiamis 1:10:56
Beautiful. On that note, thanks for reaching out and requesting to be on the podcast, I appreciate the fact that you did that. And that you were, I’m gonna use brave because I don’t know which other word to use that you were brave enough to get on 12 months out, while still going through the challenges that AVMs pose, and sharing your story in the hope that it helps other people I appreciate that.
Monica Azevedo 1:11:25
Yeah, I hope, if you can, you know, help maybe one person, at the end of the day, that’s all that matters. And my friend showed me your podcast shortly after I experienced my stroke. Because I was so lost and listening to your story and all these guests, amazing people that you’ve had on your podcast.
Monica Azevedo 1:11:56
You know, there’s so many people that you can relate to and understand. And, again, everyone’s story is so different, right? But there’s something to take away from each of them. And yeah, thank you for giving me this opportunity to share my story.
Bill Gasiamis 1:12:14
You’re welcome. Now, for those people who are listening, and who heard us chat about Monica wanting to connect with people regarding vision issues, I will have some links in the show notes where you can go and connect with Monica, and maybe reach out or if you don’t want to do that, you can just send me an email via recoveryafterstroke.com/contact by my contact form.
Bill Gasiamis 1:12:41
And then I’ll reach out to Monica and connect you guys. If you want to chat. Most of my listeners are in the United States. So there’ll be a better time difference between people in the United States and Canada. Whereas I’m in Australia, but still then even though I am we’ve still been able to connect at a reasonable hour for both of us. So thanks again for being on the podcast. And I wish you all the best.
Monica Azevedo 1:13:11
Thanks, Bill, I wish you all the best as well. Thank you for having me.
Bill Gasiamis 1:14:52
Thanks again for joining us on today’s episode to get a copy of my book Go to Recoveryafterstroke.com/book. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:15:52
Thank you to everyone who has already left a review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of information to find it easier, and that is making a difference to their recovery.
Bill Gasiamis 1:16:08
If you haven’t left a review or you’d like to do one, please just go to Spotify, Amazon, or iTunes and leave a few words about what the show means to you. If you’re watching on YouTube, comment below the videos. Some videos are starting to get more comments than they used to, which is fantastic. That means we’re creating a conversation. And we’re creating a space for people to come and find more information rather than just the video.
Bill Gasiamis 1:16:35
And also that creates a situation where YouTube makes their video available for more people like you and me to find it easier. If you’re a stroke survivor with a story to share about your experience. Come and join me on the show. You do not have to do anything you don’t have to plan for them.
Bill Gasiamis 1:16:52
All you need to do is be a stroke survivor who wants to share your story in the hope that you will help somebody else who’s going through something similar if you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover.
Bill Gasiamis 1:17:05
There is also a path for you to join me on the show for a sponsored episode. Go to recovery after stroke Contact, fill out the form explaining which category you belong to and I will respond with more details about how we can connect via Zoom. Thanks again for being here and listening. I deeply appreciate you see you on the next episode.
Intro 1:17:25
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their 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.
Intro 1:17:42
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:18:05
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:18:27
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:18:47
While we aim to provide current quality information and 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Monica’s Story – Brain AVM Recovery – Monica Azevedo appeared first on Recovery After Stroke.
1 hr 17 min
March 11, 2024Ischemic Stroke and MTHFR Gene Mutation – Amber Corker
Navigating Health: The Impact of MTHFR Gene Mutation on Stroke Risk
In the complex web of genetic factors influencing our health, the MTHFR gene mutation stands out for its significant implications. This mutation, often overlooked, plays a pivotal role in our body’s methylation process and has been linked to various health conditions, including an increased risk of stroke. Understanding the MTHFR gene mutation is essential for anyone looking to proactively manage their health and mitigate potential risks.
Decoding the MTHFR Gene Mutation
The MTHFR (Methylenetetrahydrofolate Reductase) gene is crucial for converting homocysteine, a potentially harmful substance, into methionine, a beneficial amino acid that the body uses for growth and repair. However, mutations in the MTHFR gene can hinder this conversion process, leading to elevated levels of homocysteine in the blood—a known risk factor for several health issues, including stroke.
The Connection Between MTHFR Gene Mutation and Stroke
Research has drawn a clear line connecting the dots between MTHFR gene mutation, elevated homocysteine levels, and an increased risk of stroke. Specifically, individuals with the C677T or A1298C mutations in the MTHFR gene are at a higher risk. These mutations can compromise the integrity of blood vessels and promote clot formation, thereby increasing the likelihood of an ischemic stroke, where blood flow to the brain is blocked.
Risk Factors to Watch
While the MTHFR gene mutation itself is a risk factor for stroke, its impact is often influenced by lifestyle and environmental factors, including:
Dietary Habits: A diet low in folate and B vitamins can exacerbate the risk associated with MTHFR gene mutations.
Lifestyle Choices: Smoking and excessive alcohol consumption can further elevate stroke risk in those with MTHFR gene mutations.
Genetic Predispositions: Other genetic factors may compound the risk, making it crucial for individuals with a family history of cardiovascular diseases to be particularly vigilant.
Proactive Measures for Managing Risks
For individuals with an MTHFR gene mutation, there are several strategies to effectively manage the associated stroke risk:
Embrace a Folate-Rich Diet: Consuming foods high in natural folate, such as leafy greens, fruits, and legumes, can help lower homocysteine levels.
Lifestyle Adjustments: Quitting smoking and moderating alcohol intake are key steps in reducing stroke risk.
Supplementation: Healthcare providers may recommend supplements, especially methylfolate, to counter the effects of the MTHFR gene mutation.
Seeking Professional Advice
If you have an MTHFR gene mutation, it’s imperative to consult with healthcare professionals. They can offer tailored advice, conduct necessary tests to monitor homocysteine levels and develop a comprehensive risk management plan.
Conclusion
The MTHFR gene mutation is a significant genetic factor that can influence stroke risk among other health conditions. By gaining a deeper understanding of this mutation and taking proactive steps, individuals can effectively navigate the challenges it presents. It’s a journey of personal health management, where informed decisions can lead to a healthier life.
The Interview
Amber Corker discovered that her ischemic stroke may have been caused by a gene mutation that causes sticky blood.
Highlights:
01:31 Introduction
02:01 A series of misdiagnoses
11:04 The MTHFR Gene Mutation
17:10 MTHFR gene mutation and its impact on health
28:25 Managing MTHFR gene mutation with diet
36:20 Dealing with post-stroke deficits
44:16 Stroke recovery and adjusting to new life changes
50:19 High-risk pregnancy due to genetic mutation and blood thinner use
1:00:39 Living with a lifelong alteration after a stroke
Transcript:
Bill Gasiamis 0:00
Hello, everyone, welcome back to another episode of the Recovery after Stroke Podcast. Today, we’ve got a crucial topic that could be incredibly relevant to many of our listeners, if you’ve ever been informed that your blood is sticky or thicker than normal, or if you have experienced an ischemic stroke with an unknown cause known as cryptogenic, this episode is especially for you.
Bill Gasiamis 0:24
And for those who’ve come across the MTHFR gene before and are uncertain about what the mutation means and what the potential health implications are, you’re in the right place, we’ll be delving into the consequences of the MTHFR gene mutation, and how it may relate to various health issues related to stroke.
Bill Gasiamis 0:47
Stick around as we unravel important insights in today’s discussion. Now also, I am so pleased to announce that the book is getting excellent reviews from stroke survivors from all around the world. The most recent one is from Louisa, who says I wanted to share with you that I finally was able to get your book delivered from Amazon and I tell you that I’m only on page 32 and I’m hooked, I love the way you tell your experiences.
Bill Gasiamis 1:15
The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery, where from a personal growth perspective, they were able to transform stroke from the worst thing that happened to them into the best thing that happened to them.
Introduction – Amber Coker
Bill Gasiamis 1:31
To find out more go to recoveryafterstroke.com/book. This is episode 295. And my guest today is Amber Coker, who experienced an ischemic stroke at age 30. Amber Coker welcome to the podcast.
Amber Coker 1:46
Thank you. Thank you so much for having me.
Bill Gasiamis 1:49
More pleasure. Thanks for taking some time out of your workday to be here.
Amber Coker 1:56
Not a problem, I was happy to join you.
Bill Gasiamis 1:58
Tell me a little bit about what happened to you.
A series of misdiagnoses
Amber Coker 2:01
Okay, this was 2016, I woke up on January 15 and the right side of my face was numb. And on my way to work, I work for a university. And we have an employee health clinic. And on my way to work, I decided to stop in there. And the doctor did the normal, you know, feeling of my face and raise your arms, had me walk, talk and everything.
Amber Coker 2:37
And I remember distinctly him saying well, we can rule out stroke. And he said I think you have a sinus infection. Okay, I went on to work and it didn’t get any better. I’m left-handed, and I noticed my handwriting was very bad. But I went on through the day. And the next morning, it was a Saturday and I woke up with a double vision.
Amber Coker 3:11
And I wore contacts and I had my glasses on. And I thought that it was something with my glasses. So I put my contacts in and still had double vision. I was like, Okay, there’s something wrong. So I went to an urgent care walking clinic. And they told me I had a migraine, so they gave me migraine medicine.
Amber Coker 3:33
And this was over on Martin Luther King, Jr. Weekend. So everything’s closed on Monday. But I went back to the urgent care on Monday. And I was like, how long is this supposed to take to work? Because, like my vision is a little bit better, but like my face is still numb. And they were like well it should be working by now. They’re like you need to go see your doctor tomorrow.
Amber Coker 4:02
So I went to my primary care on Tuesday. So now you know, like we’re four days in from whenever I woke up. And she ordered for me to have a CT. And I did that on Wednesday. And then it came back inconclusive. So then she ordered an MRI on Thursday. And that afternoon, it was late in the afternoon. She said I need you to come to my office at eight o’clock tomorrow morning to go over the results.
Amber Coker 4:37
So my husband and I went to when my son was a month shy of turning one. So you know I have an 11-month-old and then my husband and so my husband and I went to her office at eight o’clock. And she said it appears you’ve had a stroke. “It appears” like, either I did or I didn’t like, I’m you know, so she was like I’ve scheduled you with our neurologist that’s in town I live in a fairly small community of 50,000 people, we had one neurologist in town.
Amber Coker 5:23
She said, I got you in on Monday, for an appointment with the neurologist. She said, Now over the weekend, I need you to stay calm. And I need you to not, you know, your blood pressure can’t rise, I need you to stay extremely calm. And I said I’m 30 years old. I have an 11 month old. And you just told me that I had a stroke.
Amber Coker 5:51
And you want me to stay calm over the weekend until I can go to see a neurologist. I was like, are you kidding me? Like, there was like, okay, like, I’ll stay calm. And she said, if anything changes the way you feel anything at all, you get a headache. You know, like, all of a sudden, you can’t move, you know, one of your limbs the same way, anything at all changes.
Amber Coker 6:19
You go to the emergency room immediately. I said, Okay. I had just started a new job here at the university. I have been working for the university for four years, but I just started a different job at the university. So I had to call my boss who had been, I’d been working for her for three months. And I was like, Well, I can’t come to work today because I had a stroke.
Amber Coker 6:45
And she was like, I’m sorry, you cut out. It sounded like you said you had a stroke. And I was like that’s what I said. And she was like, Okay, I don’t know what to do with that. And I was like, me neither I’m sorry. But I’ll be back on Monday. And she was like, I don’t think you are going to be back on Monday.
Amber Coker 7:08
And I was like, Okay, well, I don’t know. So like, okay, well just keep me posted, I guess like, okay. So that night, I woke up at about two o’clock in the morning, and I had a headache. So I wake my husband up and I’m like, I have a headache. So we call my parents to come and get my son. And we go to the emergency room. And I had a wonderful doctor in the emergency room and they did another scan, and they said well, nothing new is happening.
Amber Coker 7:48
So I was like, okay, so you know, I’m there until, who knows how long, and then I go back. So then the rest of the weekend is fine. And nothing else really different happens. And then we get to Monday. And I’m taking a nap before my appointment. And it’s like an hour before my appointment with the neurologist.
Amber Coker 8:12
And my mother-in-law was coming over to watch her son. She had just arrived and the neurologist’s office called. And they said, Well, the doctor just looked at your chart. And he said not to come to the appointment, but to go to the emergency room. Because we don’t have the equipment to deal with how severe your case is.
Amber Coker 8:43
She was like we’ve called over there, they know you’re coming. So you just need to go in there and tell them who you are. And so I’m like, okay, so I get up, I get my husband. We go back to the emergency room. And he goes up there and he says, This is Amber Coker and they just go okay, like they had no idea why I was there.
Amber Coker 9:13
And he was like, well, she had a stroke, and like, bam, all bets were off. Everyone started moving. They’re grabbing me. They’re taking me back. They’re like getting the wrist thing on, you know, they’re like getting me into a room then they start trying to like, take off my clothes and get me hooked up and asking me all the questions to type into their thing.
Amber Coker 9:39
I had like five nurses in there, all doing different stuff. And they’re like, pushing my husband out of the way. And like the doctor that I had seen Friday night whenever I went in there, walks by and he’s like Amber, why are you here? And I was like, well, I and like I was trying to explain to him, but everybody was like moving and talking and he was everybody stops.
Amber Coker 10:07
And so everybody stops. And he was like, why are you here? And I said, my appointment was supposed to be, you know, at 3:30. They called me and they said, to come here instead. And he said, let me make some calls and find out what’s going on why they sent you here.
Amber Coker 10:29
They said she’s not having a stroke right now, you guys like she doesn’t need like, all of this, just stop. So then we wait for four hours. Nobody tells us anything. We’re just in there in the room for four hours. And finally, my husband goes out and he’s like, what’s going on? And they’re like, Oh, we’re just waiting for a room to open up at OU Medical, which is in a big city in a different town.
The MTHFR Gene Mutation
Amber Coker 11:04
And I was like because she’s been admitted. And we’re like, what? And so they transferred me down to Oklahoma City, and they admitted me to the hospital. That’s where I met my neurologist with whom I had been with for seven and a half years. And where they did all of the testing, and I found out that I have the MTHFR mutation gene.
Bill Gasiamis 11:38
Stop there, this, oh, my God. So I’m listening to this and going, surely at some point, they said, send her to the hospital before the 10 days. Someone said, go to the hospital, someone said go and get a scan at the hospital, someone said go and have an MRI. It’s just ridiculous that it took so long.
Bill Gasiamis 12:01
And then it had to go around that massive loop to get you there. And it’s amazing how simple that seems. And yet how everyone missed the critical thing with you, which is to say, you need to get to a hospital. That was it, I can’t understand how that happens. It’s so strange.
Bill Gasiamis 12:23
And to say to blame it on your medical system in America and all the problems over there and all that kind of junk. It’s not fair, because I hear it from people all over the world. It’s just humans. It’s just people that make the wrong call. And I’m not sure what it is. But I can’t even explain it. It’s so strange. I took seven days to get to the hospital because I was the idiot who decided that I was good enough not to go to the hospital.
Bill Gasiamis 12:55
Whereas in your case, you know, you’re unwell, you’re feeling on it, everyone knows you’re unwell. They do a scan, and they confirm it. Everything is supposed to be in your favor to say this lady needs some help. And instead of helping you, they told you I’ll see you Monday, and I won’t be back for a little while. It’s crazy.
Amber Coker 13:23
I mean looking back, I would have gone to the emergency room. I don’t know. I mean, now, like when my face was numb, or when I had double vision, instead of going to urgent care or to, you know, the employee health clinic. However, you know, I was still seeing a medical professional. That I thought, well, you know, if I go see them, then they’ll they’ll tell me. Like, if I needed to go to the emergency room, which they didn’t.
Bill Gasiamis 14:03
Yeah, I know. I know that, oh my gosh the chances that somebody who hasn’t had a strike and listens to this podcast, unless they your friends and family. It’s very low. Most of the people listening are stroke survivors and caregivers. And they probably all like you and me, we know what to do now. But it’d be so good if we could just tell the people of the world. If you have these types of things happen to you just go to a hospital.
Bill Gasiamis 14:03
Don’t wait 10 days before somebody sees you, insist that somebody says you, man, it’s such an intense moment I can’t get over it. But I appreciate how it happens. And I’m glad that everything worked out and that you’re here and you can join us and all these amazing things have happened, right? So we’ve had a really good outcome, all things considered.
Bill Gasiamis 15:03
Oh, my gosh. So the reason I wanted to speak to you when you reached out was because you said something that nobody has ever said before, about the connection to stroke and the MTHFR gene. Now, most people listening won’t know what the MTHFR gene is. However, I do know about the MTHFR gene a little bit.
Bill Gasiamis 15:30
The reason I know about it is because I tested positive for one copy of the gene. So I picked it up from one of my parents. As a result of that gene, I have gone out of my way to change my diet to ensure that certain things aren’t consumed.
Bill Gasiamis 15:48
Now, for people who are listening, and have never heard of that, and watching, can you tell us what the MTHFR gene is, then we’ll talk about why it’s important to know whether you have this particular gene mutation and whether you have one copy or two copies.
Intro 16:06
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 16:31
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about Your Stroke. 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, recoverafterstroke.com and download the guide. It’s free.
MTHFR gene mutation and its impact on health
Amber Coker 17:10
Yes MTHFR is methylene tetrahydrofolate reductase. Which is a huge mouthful. And it took me many years even though I have it to know exactly what it all stands for. You know, and of course, the acronym of the MTHFR is really fun. Because you know you look at it and you think it could be something else. And sometimes I feel like it is so the gene mutation that causes the body to not turn folate and folic acid into their active form, which increases homocysteine and your homocysteine levels in your body, which irritates your arteries, which can cause blood clots.
Bill Gasiamis 18:20
Let’s pause there are let’s pause there for a second. Okay, so the MTHFR gene, you can pick it up, you can pick it up from your parents. As a result of that when both of your parents have the gene and you have the gene. What that does is you need to be aware of it because there are certain foods that you cannot do well with you can’t break down you can’t process them in your body.
Bill Gasiamis 18:47
Now when I say foods, not necessarily foods but ingredients in foods, one of those ingredients is folic acid, which is the synthetic form of folate, which is used specifically for women who are going to be pregnant or are pregnant to decrease the chances of neuro birth defects in their children. And then as a result of that, for women to get a lot of folic acid and folate through their diet, because usually it’s found in leafy greens silverbeet a whole bunch of other you know, lovely leafy greens.
Bill Gasiamis 19:38
What they do is what the people that know better to do is they put folic acid in bread in flour, and all flour has added folic acid and the purpose of that is to decrease the chance of neural birth defects. I know it happens in A lot of Western countries, but it happens in Australia. As a result of that, people who have the fat MTHFR gene don’t know, or perhaps getting over, what’s the word overexposed to folic acid? And they shouldn’t be they should be avoiding it. Did I say it well?
Amber Coker 20:27
Yes. Another thing, along with just what the folic acid that they put into food for women who are pregnant, especially during the first trimester, they suggest them taking a folic acid supplement, or also just a regular prenatal vitamin, they have a high, you know, high doses of folic acid. Which, if you have MTHFR, and I don’t know exactly this part I’m not real sure about but the if you have MTHFR.
Amber Coker 21:16
You have a higher chance of miscarriage because of the amount of folic acid that you have. And that you’re like that you’re taking, especially during the first trimester due to your folic acid supplement or your prenatal vitamin. And it can cause miscarriage. And that was one of the first questions after my blood tests came back that my neurologist asked me, he said, How many miscarriages did you have before you had your son?
Amber Coker 21:53
And I looked at him like he was crazy. was like I didn’t have any. And he was shocked. Like that shook him to his core. Like he didn’t, because he just knew he just knew I had to have had several miscarriages before I had my son. And, you know, I was like, I didn’t have any and he was like, how many miscarriages Did your mom have?
Amber Coker 22:21
And I said, Well, she had two she had one before my brother and she had one before me. And he was like, okay, and then he seemed to calm back down. Like he was like, okay, my world is back in order. He was like, You were lucky. And I was like, I mean, I was lucky. But so that’s another thing that it causes because your body is not breaking down that folic acid and folate. It can cause miscarriages as well.
Bill Gasiamis 22:54
So just so we explained things well. You had a specific stroke that has a particular title, which is basilar artery thrombosis. Is that right? Yes. Did I say it well?
Amber Coker 23:13
I had a blood clot in my basilar artery. It was just an ischemic stroke. That was just the fancy term of the location of where my blood clot was.
Bill Gasiamis 23:28
Okay. No worries. So that is not linked to the particular MTHFR gene, the location is just the location where the blood clot ended up anyway. Okay, so your doctor is pretty switched on? Does he give you the details about the MTHFR gene? How does he take you through that discussion? Because you’ve never heard of it before?
Amber Coker 23:52
Oh, gosh, no, no. And I don’t like no, I had no idea. My husband recorded on his phone, the whole thing whenever he came in, but it ended up being like an hour and a half of explanation. Quite honestly, and I think my brain did this kind of to protect itself. I don’t remember exactly how the whole conversation went. But yes, he did come in and he did explain it.
Amber Coker 24:22
The way he explained it to me the first time around, was that because folate and folic acid do not break down, it makes your blood sticky, which makes it more prone to clots is how he explained it. Then that’s kind of real, basic terms there’s more to it than that, but that’s the way he explained it. He said that since and he’s a very, very well respected and very, you know, very good neurologist and he has practiced all over the United States.
Amber Coker 25:09
And he said when he moved to Oklahoma, he saw more cases of MTHFR than he had ever seen. And he thought that it had something to do with the Native American blood. He has no science to back that up. That was just kind of his thought. But he found it very interesting that whenever he moved to this part of the country, he saw a lot more of it.
Bill Gasiamis 25:46
I guess I was gonna say, is there a large Native American community in Oklahoma? Yes. Do you have Native American ancestry?
Amber Coker 25:56
I do. I do. It is not. It’s not strong. I think I’m like one 128 or something. Okay. So it’s not, it’s not like I’m half or a fourth. But I think pretty much everyone if they were born in Oklahoma, or one of the surrounding states probably has somewhere in their lineage, some Native American blood. Just because this part of the country does have was, you know, Native American land for so long. But yes, I have I have two copies, of the mutation.
Bill Gasiamis 26:40
Okay, what’s what does that mean?
Amber Coker 26:44
That means that I got a copy from my mom and I got a copy from my dad. So I was the lucky one. And because, I am homozygous, which means that I have the two copies. If you just have one, then you’re heterozygous. I can’t just manage it with diet.
Amber Coker 27:12
Heterozygous, which my son is heterozygous. He was going to get one copy for me because I have to. So he had no choice. He was going to get one. I did have we had him tested. And he did he just has one copy. So his, his can be controlled with diet and hydration.
Bill Gasiamis 27:41
But you say I also hit a rose Agus hit her out means one homo means to. Okay, I just need to remember this because I keep forgetting. And guess what? Guess what I just remembered, which is interesting. I just remembered that my dad had taken a blood thinner. The reason my dad takes a blood thinner, which I did not know about for many years until I was an adult, is because the only way my dad can describe his is because my blood is a little bit sticky.
Managing MTHFR gene mutation with diet
Bill Gasiamis 28:25
Or thicker. Wow. That’s fascinating. That’s fascinating. So what I’m then certain of is that my children, I’ve got to now confirm again, whether or not I’m heterozygous, or homozygous, I can’t remember now. Now I can’t remember. So I’m going to confirm that. And then I’m going to speak to my children about that. And you said that your son says he’s got one copy. You can manage it with diet? No. What does that mean? How do you manage that with diet?
Amber Coker 29:04
I’m being aware of the ingredients of what he is eating how much folic acid he’s taking, and hydration. That was one thing that the doctors said was staying hydrated. If you’re hetero, you just have the one copy. Hydration plays a very large part in keeping that under control because it keeps the blood moving smoothly through because the more dehydrated you get, the more likely that that stickiness is going to, you know, come through.
Amber Coker 29:46
So staying hydrated and not taking hormones. You know, guys were, you know, males when they’re teens, they want to make that testosterone tight, you know those things to bulk up or whatever, I’ve had to make it, my son is only nine now. But we’ve already started the conversations of like, you can’t do that. Like you, you have to stay like when you’re, he plays soccer.
Amber Coker 30:22
And you have to stay very hydrated, you have to drink lots of water whenever you are playing. And when you get old, and he doesn’t understand it now. But I’ve started early talking when people start talking about taking supplements and stuff to bulk up or be faster, whatever like you cannot do that. Like you can’t do it. Like, yeah, and he knows about, he knows about my stroke. And he knows, like, I’ve told him all about it. And so I think he understands. But we started real early talking about that stuff. Hopefully, it sticks as he gets older.
Bill Gasiamis 31:04
I love that you started so early because I think about it now everything’s coming back to me. All the people that I’ve interviewed that have had a stroke that has got, apparently No, cause they’ve had an ischemic stroke. And they have been told that it is a stroke that they can’t find the cause for that they have no idea why it happened. And there’s nothing we can do and all that type of thing. And I’m thinking about that now. And it’s like, wow, these people may have had an MTHFR gene issue.
Amber Coker 31:35
They should have their blood tested. It can be tested by just a blood test. You know, there’s a specific, it’s not a specific test that they run just like a normal blood test. But I don’t know exactly what it is that they call it. But you can ask, you know, I need to be tested for the MTHFR mutation.
Bill Gasiamis 32:10
I was gonna say to people who are listening and watching if you’re a stroke survivor who’s had a stroke, and it has been an ischemic stroke, and they’re not certain as to why it happened, go to your doctor Monday morning, and ask for a MTHFR gene test, whatever it costs, get it done, because this is one awesome way to prevent further strokes from happening, especially if you’ve had an ischemic stroke.
Amber Coker 32:40
It is also a way to help prevent your family members from having a stroke Possibly, yeah.
Bill Gasiamis 32:50
I just can’t believe I’m just so stunned. It’s somebody that I’ve known for many, many years. And nobody, the people who told me that I had the MTHFR gene just explained to me that I should avoid folic acid. And that’s going to help me with my energy levels going to methylate things better and absorb the energy from my food and process that and turn it into energy. And that makes complete sense to me. But they didn’t give the other deeper explanation as to what the purpose of avoiding folic acid was. So I imagine when you guys go shopping, are you guys forever Turning the pack around and looking at the ingredients list? Again, that’s out?
Amber Coker 33:33
No, we probably should be, but we look more at vitamins. You know, like, just like the daily vitamins that that my son takes and then I take just to make sure that it does not have folic acid and that that’s more of what we do. And then, I mean, I’m aware of it. I mean, I do kind of look to see every once in a while but it’s the diet part is not the part that I that I focus on a whole lot. I probably should but I don’t.
Bill Gasiamis 34:26
Yeah, fair enough. I was just curious how you guys go about living with that kind of information. I know you shouldn’t be over. What’s the word like? Are you anxious about it? And think about nothing else all day every day. I know that you should not be like that. No, I don’t. I just go about my life as normal and I eat foods that contain folic acid as little as possible, but I do from time to time, especially sometimes bread.
Bill Gasiamis 34:57
Usually, I avoid bread like the plague pasta, and all that kind of stuff. Anything that has flour, wheat flour in it, I avoid. But every once in a while I’m going to have some and I don’t think that type of amount of folic acid intake is going to make a difference to my right, right health and well-being, you know, down the track, because I’m not consuming too much of it.
Bill Gasiamis 35:25
Now, what annoys me about this whole folic acid issue is that put it in red, so that women can avoid neurobirth defects. Well, men don’t need folic acid to that extent for that reason. So it’s like weird that let’s dose the whole population when only half the population well, not even half, but we’ll say half the population benefits from having.
Bill Gasiamis 35:49
And I say not even half because some people don’t need additional folic acid in their diet, they have healthy levels, regardless of whether they’re consuming it in this form, or foods. So it’s a really weird thing that governments do, let’s, you know, put a chemical in the food for everybody to consume and then just assume it, it’s going to be fine.
Amber Coker 36:19
Absolutely.
Amber Coker dealing with post-stroke deficits
Bill Gasiamis 36:20
Yeah. You know, with the stroke. So what did you end up coming home with that you had to recover from or overcome? Did you have deficits that you had to deal with, I know that you initially noticed the numbness in your face. And that was there while you were trying to get the diagnosis. What happened after that?
Amber Coker 36:41
When I came home, eventually, the numbness lasted probably about a month, slowly kind of going away. I had weakness in my left arm. And I felt my whole left side. I felt like I walked funny. And that was something then going in Walmart, walking with my husband, I was like, do I look funny? Like, do I look like I’m walking funny? And he was like, no.
Amber Coker 37:18
And I was like because it feels weird. I feel like I’m not walking, right? And he was like, You look fine. You look like you’re walking just fine. So it was very strange to me to do that, I also with a weakness in my left hand, which I’m left-handed, so I had to do a lot of physical therapy with, you know, strengthening my left hand. And it took a long time for my handwriting to go back to normal. So, I do struggle with words, at times.
Bill Gasiamis 38:01
Reading words or speaking words?
Amber Coker 38:04
Speaking words.
Bill Gasiamis 38:05
On the tip of your tongue, they can’t come out or do you not know which word to use?
Amber Coker 38:15
I know what I want to say, but I just have trouble getting it to come out. And that’s you know, I started following your page on Instagram very shortly after my stroke. And I would see it as I’m scrolling through, I would see a post and be like, oh, and it wasn’t just shortly before I reached out to you to tell you about my stroke.
Amber Coker 38:44
I saw a post of yours that said, you know, like if you had a stroke while you were asleep, do you have sleeping anxiety? And I was like, well, yeah. Oh, wow. I wonder if that’s why I don’t sleep. And I kind of just when I was like, huh, like, and I just kind of went on. And then a little while later, I was scrolling through I saw a few days later that you say something about like, do you notice your deficits more when you’re acutely stressed?
Amber Coker 39:21
And I was like, yes, like when I’m highly emotional, like angry or upset. I have a very hard time finding the words that I’m trying to say. And I was like, Oh my gosh, like, and that’s whenever I was like, You know what? This website and like, you know, I’ve been following it for years, you know, and I just kind of scroll through I read it sometimes I’d read the comments, you know, see what everybody else was saying.
Amber Coker 39:52
But just kind of going on through. But it wasn’t until those two that I kind of just stopped and that’s when I went to your website and I listened to podcasts. And then I saw about like, being a guest. And then I was like, I’m just gonna tell him about my story. I mean, who knows? I wonder if you’ve ever heard of MTHFR? Because I sure haven’t. But it was those two things that so yeah, my speech the trying to find a word that is one thing that I do struggle with.
Bill Gasiamis 40:25
The interesting questions, don’t come from me, they come from people who I coach who are trying to overcome their deficits and their stroke. And they make sense to me when I read them. And when I ask people I notice that I also get my deficits to get worse when I get highly emotional. I notice how they get worse when I don’t have a good night’s sleep, that kind of thing.
Bill Gasiamis 40:53
That all makes sense. But sometimes they seem like they’re for me. It’s like, I No, that’s no big deal. That’s normal, I get it. And then I realized that people like you go, Oh, my God, nobody ever asked me that question. Of course, that yes, that is and then they connect the dots. And then that somehow makes things better or different or helps them adjust or change something.
Bill Gasiamis 41:19
One of the strangest things, one of my stroke survivors, who I coach said, was that she hears noises in the affected side, like voices from other people in just the affected ear. So she doesn’t have any ear problems, per se. But on the stroke side, that is affected. She hears noises, words, people talking, and it’s driving her bananas, she says, and she goes, Is that normal?
Bill Gasiamis 41:47
As I’ve got no idea. I don’t know what that is. But let me ask the community, the whole tell us whether it’s no. And sure enough, I asked a question. And bang, people are going, yep, I hear noises. I hear voices. I hear things since the strike in my ears that I’ve never heard before. And what that did say? It seemed to just settle people down about it, it seemed to go, oh, okay, it happens to other people, oh it’s just the result of the stroke, some people played it down, it’s nothing then I can ignore it.
Bill Gasiamis 42:20
And it’s like Wow, yes. I mean, it’s such. My, stroke survivors who I’m coaching and the people who are listening are a wealth of knowledge. And I really, truly appreciate the sharing of that knowledge. Because I learned so much from it, and then we can help other people. But this is important that the MTHFR gene is really important for people to know about. And if they do get tested, it just gives you a little bit more information.
Bill Gasiamis 42:52
It’s not invasive, it’s not hard to deal with when you know about it, and you can just take small preventative steps, especially if you’re the kind of person who’s already trying to prevent another stroke from happening. I think it’s really important. And I love the fact that you had the good fortune after all of that story to end up in the right. doctor’s surgery, and then speak to the right neurologist who knew about their condition and was able to give you a lot of information that you can then share.
Amber Coker 43:24
I love my neurologist. I loved him. He recently went to a Veterans Hospital, just within the last six months. And so, since I’m not a veteran, I can’t see him anymore. So I have a new one. But, I mean, he was with me, I just happened to be very lucky that he was the one working at the inpatient hospital that day, and that he was a stroke biologist he says that he specializes in strokes and that I came in that day. And then because he sees patients, you know, outpatients in the clinic, too. So I was with him for seven and a half years before he moved over to the Veterans Hospital.
Stroke recovery and adjusting to new life changes
Bill Gasiamis 44:16
So even though you’re seven and a half years out, or it’s 2016, so eight years now, are you still getting regular visits with your neurologist and scans and all that kind of stuff? How are you managing this?
Amber Coker 44:33
I don’t get regular scans. But I do go I do go see my neurologist once a year. Just to do well, I’m my neurologist also treats me for migraines. And so when I go more like what right now I’m going more than once a year but that’s just for migraine stuff, but for stroke stuff, it’s once a year Just to do the typical, like, make sure that everything you know this thing.
Amber Coker 45:08
And if anybody that’s gone to the neurologists, you know, if you don’t have to do all of this like, all of the different things. So I do go once a year for that. Because I am on a blood thinner. And it’s been working great, you know, for eight years, so, yes, I do go once a year, and I will be on a blood thinner for the rest of my life.
Amber Coker 45:41
And I will probably see a neurologist. Let’s see, what did he tell me? He said that I could go out 18 to 24 months at max, at some point, but I, I, I’ve always said I feel better going once a year. That’s just kind of like, I just feel better with the 12 months going in just making sure.
Bill Gasiamis 46:09
That’s always good to go to the doctor once every 12 months to just do a checkup do some blood, touch base, and make sure everything’s going well, I think that’s great. So what was the hardest thing about this stroke for you?
Amber Coker 46:26
I would say initially, the hardest thing was knowing that I had blood, a blood clot in my brain. And then it was just there. And at any point, something could happen. I was what my hospital in town calls a frequent flyer in the emergency room for eight months after, because every time something felt weird, in my head, I went to the emergency room, I had more seat tees and more MRIs in the eight months after than any one person probably would have in three lifetimes. Like until, like eight months out.
Amber Coker 47:35
One of the times that I went in, and when I went, I told them, I said, I know like, I know that I sound crazy. Like I know that. But something is off. And this is my history. And I need I need you to tell me that I’m not having another stroke. Like that. That’s what I need. And that at that eight-month mark, they did a scan. And he said I don’t see anything. And I said, except for the blood clot.
Amber Coker 48:09
And he said, there’s no blood clot. I said, What do you mean, there’s no blood clot? And he was like, there’s no clot on the skin. And I said, You mean it’s dissipated? And he was like, I don’t I don’t know. I’m just telling you like, there’s no blood clot in your brain. After that, I was fine. I didn’t go back. I didn’t that I didn’t have to go back to the emergency room every time I knew that something felt off.
Amber Coker 48:44
So initially, it was that fear of when is the next one going to happen. After that, it was the hardest thing was knowing that my life was not going to be the way I planned it. Because I was advised not to have any more children which was not part of my plan. Um, I never thought that I would have an only child. I never wanted to have an only child. And so that was the hardest part trying to adjust to that.
Bill Gasiamis 49:36
That’s a tough one. Why would they say that that was advised why did they advise against that?
Amber Coker 49:44
They said that it was I needed to it had to be extremely planned. Extremely monitored. There could be there could be no accidents. I mean like, I mean, it had to be a very rigid and structured conception, like I mean everything. And even then they would have to, you know, I would be weekly visits with a specialist for the whole time.
High-risk pregnancy due to genetic mutation and blood thinner use
Bill Gasiamis 50:23
Thinking about miscarriages and challenges.
Amber Coker 50:27
Yes and then bleeding out later on. Because they would have to I would have to stay on some type of blood thinner, I would be switched from El Eliquis to a different one. Okay, but then it would be constantly checking in. I mean, they were they did say, you absolutely can. However, it is extremely high risk. Okay.
Bill Gasiamis 50:56
Okay. So two things are going against you so to speak, is the MTHFR gene mutation that you carry. And then it’s also the fact that you’re on a blood thinner to help make sure that your blood doesn’t clot. And in the event of the MTHFR gene, causing challenges to your, to your pregnancy. And then there is a situation where there’s some kind of a complication to that, that your biggest risk after that is bleeding out. Because you’re on a blood thinner.
Amber Coker 51:39
Which seems kind of contradictory, you know, because, like, on one hand, they’re, they’re afraid of clotting. So, on the one hand, they’re afraid of bleeding out.
Bill Gasiamis 51:50
Yeah, yeah. Wow. Okay.
Amber Coker 51:53
It was one of those things where it was, if you do this, it has to be before you’re 35. So it was one of those conversations we had to have every single time I went in.
Bill Gasiamis 52:07
Did you have an ob-gyn involved in this particular conversation? Or did that happen without?
Amber Coker 52:18
No. Because we never got that phone to where I said before, because it was more of a, it was more of a struggle between me and my husband and my neurologist that between the three of us trying before we could even get to the next step of bringing in an OBGYN to you know, as a high-risk specialist for that.
Bill Gasiamis 52:52
And anyway, your neurologist seems like an amazing, amazing doctor. You know, he’s got so many other things that are going on that he’s aware of that he needs to make sure that you’re advised of.
Bill Gasiamis 53:11
So that he manages your health and well-being way beyond just what you guys discovered with a gene. And that he knows like, what the complications are for you down the track, should you choose to go down a certain path, and it’s big, it’s a big call to cite somebody, you probably shouldn’t have another child, but he’s not saying that what he’s saying is, you should be fully aware of the risks, you should make a fully informed decision.
Bill Gasiamis 53:40
And these are the chances these are the risks that you face over and above what say, quote, unquote, a normal person who doesn’t have these conditions will face and I love that about him because that’s not many. There are not many people who have that foresight that do that kind of deep thinking about what the future holds for somebody who’s you know, in their 30s Right?
Amber Coker 54:10
He is an Outstanding, outstanding named Doctor. And ultimately, he did leave the decision up to me and my husband and you know, my husband said I do not want to have a toddler and an infant and no wife so common and you know, right at first you know, I was going every three months every six months, you know, for a long time every six months and then I graduated to like yearly.
Amber Coker 54:47
But you know, for a while there, I was going a lot and every single time it was like do we need to talk? Do we need to have another pregnancy talk? Are we going to do it like are we talking about this time? And every time we would look at each other and we like But no, because we weren’t talking about it. And finally at the last one, when I was 34, he said, This is it. Are we doing this? And I said, and at this point I had I had come to terms with it. And I said, No, we’re not.
Amber Coker 55:20
And my husband goes, well, and I looked at him. And I just I, my eyes got huge. And the choice words that came out of my mouth, and I was like, You have got to be kidding me. And he was like, what? Like, now it’s like, for real? And I’m like, Yeah, I know, it’s for real. It’s like, are you? And I was like, No, we’re not doing this. Because the point, you know, now, my son is talking, and he’s out of diapers, and he’s getting ready to start school.
Amber Coker 55:59
And so I’m like, I’m not starting over. Like, I’m done with that. And I had already come to terms with it. So I was like, no, no, we’re not, we’re not having it. Like, we’ve decided what we’re done. And so my doctor, he just laughed, and he was just like, I love you guys so much. He was like, You guys are the highlight of my day when are you coming?
Bill Gasiamis 56:22
You’re, you’re fair enough as well, to give him the dirty look. He didn’t realize it was real, because he’s a male. And he doesn’t have any of the things that go along with, you know, the, we’ll call it the, you know, the natural cycle that women go through where it ends, eventually, the opportunity ends doesn’t have that he’s never thought about that. Because he doesn’t have to think about that. He’s just going about life going.
Bill Gasiamis 56:49
Yeah, that’d be good. And then he goes, I’m gonna change my mind now. And are you on board? Come on. But I get what he’s thinking, but you’re right, as well is that, your life, when you’ve got young children if you’ve got them young together, it’s chaotic. And it’s terrible. And it’s difficult, and it’s amazing, and it’s lovely. But they it ends, the chaos ends very rapidly because both children go through their phases very close together.
Bill Gasiamis 57:20
And then, and then you’re kind of free, you get your life back, you start sleeping more, you do all these things. And then I know, because I’ve got some friends who have got children that are 567 years after the previous one. And they’re all that pain and suffering of having lovely, beautiful, gorgeous children gets extended, and it gets drawn out. And you’re, and you’re in the twilight zone for too long.
Bill Gasiamis 57:51
And I see them so I know what you mean, I get what you mean. And I think you made the right decision. Either way, you know, you made the right decisions to look after your health and to honor his first request, which was I don’t want a toddler, and a baby and no wife. Like all those things, they’re really important things to consider. And I think you guys have gone about it, you guys have gone about it the right way the hard decisions to make. So what stroke taught you
Amber Coker 58:33
A couple of different things. One is to do what you want and do what makes you happy.
Amber Coker 58:47
Because, you know, you don’t know what the future holds. And life is short and you never know what’s going to happen. And, and the other thing is, it’s taught me to give myself Grace give me to give myself grace, in everything in adjusting to what my new life is going to look like. And give myself grace in adjusting to any deficits and to you know, to just be patient with myself just like I would with other people.
Bill Gasiamis 59:36
Are you hard on yourself? Normally?
Amber Coker 59:39
Yes. And, I did not like not being able to bounce back just right away into what was normal, and I didn’t like that. And I had to adjust my mindset of, you know, it’s okay, because this huge thing happened to your brain, which can alter absolutely everything about you. So, I, like it’s okay that you’re not just, you know, just like that back to how everything was.
Living with a lifelong alteration after a stroke
Bill Gasiamis 1:00:39
Yeah, that’s good to give yourself grace. I’ve met a lot of people who say something similar who are not patient who give themselves deadlines, some people act like their worst boss would act to them in the work environment, you know, they have all these expectations or these deadlines and, and it’s like, this is not a broken foot, you don’t have you don’t go to the doctor, get a scan, get a cost that put it on six weeks, come back, take the cost off a little bit of rehabilitation, and you’re back to normal, it doesn’t it’s not help. No, at all.
Amber Coker 1:01:23
No, no, this it’s a it’s a lifelong alteration. Whatever your deficit may be, or, even if you don’t have any, there’s always that, you know, there’s, there’s always that something is I mean, it’s, it’s an alteration of your outlook on life as well. And it’s like, long, it’s not, it’s not just something that can, you know, slap a cast on, and then you’re good to go.
Bill Gasiamis 1:02:00
For me, I describe it as it’s, it’s like having like a scar, a really serious scar that you’ve got early on in your life. And even though the scar tissue has healed over and it’s gone you can see the sky every day. And every day, the scar reminds you of where you got that scar and how you got that scan. Sometimes you don’t notice it.
Bill Gasiamis 1:02:19
But sometimes you notice and you remember that that scar happened. And this is the way that it happened. Now, scars fade, which is cool, right? They fade and they get less obvious. And that’s our stroke kind of evolves, it can for very, very many people fade, get less, take less space up in the front of your mind.
Bill Gasiamis 1:02:43
And it can just sort of head to the background a little bit and it does do that. But yes, most people I’ve spoken to have had a stroke that is 510 1520 years out. All talk about it still as if it’s something that they’re dealing with managing overcoming. Moving Beyond living with. Yes. Yeah. Yeah.
Amber Coker 1:03:11
I mean, it’s just you live with it. So yeah.
Bill Gasiamis 1:03:17
Move on I, what’s something that you want to tell some other people who are listening? That may have been through something similar to you, obviously, with regards to the stroke, but then obviously, with the news that maybe you should avoid future pregnancies, that kind of thing? What kind of advice would you like to leave them if somebody has been given that type of information that it’s just fresh for them now?
Amber Coker 1:03:46
It’s okay to mourn the Life You thought you were going to have or the future children that you thought you might have. Like, that’s okay. Hey, it’s okay to do that. And that just because you haven’t had them doesn’t mean that it’s not a lot less for you. So that, you know, Greve however you need to. And take the time that you need to, to adjust to what your new life is going to look like.
Amber Coker 1:04:31
I can’t imagine at this point, having any other children other than my son, I was meant to be the mother of an only child. I was meant to only have a boy. I always thought I wanted to go, girl. I don’t know what I would do with a girl. I have no idea. And so it’s although it’s not something that I would have chosen to only have one, it was the right thing for me. But like I said, it took four years for me to get the initial, hey, you probably shouldn’t do this.
Amber Coker 1:05:16
And all of the risks and everything to that final appointment where I had come to terms with it. And I said, no, like, final answer, we’re not doing this. It and and it did, it took four years for me to get there. And that’s okay. It’s okay if it takes you a long time. And it’s okay. If it takes you longer than four years. You grieve, however, you need to
Bill Gasiamis 1:05:49
do like that. Giving people that space to take to let the process just take the course that it needs to take, that’s important. And in that time, for some people, you might need therapy, you might want to go and chat to somebody about that support groups, you might need to do all of that stuff, which is all fine. And that will help. So I love, that gift of giving people the time that it takes. And we don’t know what the length of that is. It’s just however long, it takes for you to take
Amber Coker 1:06:27
No problem, whatever, whatever it takes. Yeah.
Bill Gasiamis 1:06:30
Thank you so much for reaching out. And joining me on the podcast, I appreciate it. I learned a lot today. And it’s very rarely that I connect the dots in, you know, things that I’ve read about because I read about the MTHFR gene 12 years ago, it’s very rarely that I can then connect the dots, and then make that a really good compelling story and give people a lot of amazing information about what they can do to protect themselves from avoiding another stroke perhaps.
Bill Gasiamis 1:07:02
And that’s what I said earlier about how the community knows. And all I’ve got to do is ask and I just love the fact that you knew that. And that you could tell that. I don’t like the fact that you had to go through a hard time to find that out. But I appreciate that you’re willing to share it.
Amber Coker 1:07:23
Yes, thank you so much for having me.
Bill Gasiamis 1:07:26
Thanks for joining us on today’s episode, I hope you’ll learn something new. To get a copy of my book go to recoveryafterstroke.com/book. To learn more about my guests, including links to this social media and to download a transcript of the entire interview. Please go to recoveryafterstroke.com/episode Thank you to everyone who has already left the review. It means the world to me, that podcasts live and thrive because of reviews.
Bill Gasiamis 1:07:53
When you leave a review, you’re helping others in need of this type of content to find it easier, and that is making a massive difference in their recovery. If you haven’t left a review and would like to leave when the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube comment below the video I love responding to comments on our YouTube videos.
Bill Gasiamis 1:08:19
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor who wants to share your story in the hope that it will help somebody else going through something similar.
Bill Gasiamis 1:08:35
To connect with me just go to recoveryafterstroke.com/contact fill out the contact form and I will be in touch with more details about how we can connect via Zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:08:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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 in all content on this website at any linked blog, podcast, or video material control.
Intro 1:09:13
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical 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.
Intro 1:09:36
Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:09:52
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:10:12
While we aim to provide current quality information in our content, we did 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 the links we provide however, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Ischemic Stroke and MTHFR Gene Mutation – Amber Corker appeared first on Recovery After Stroke.
1 hr 11 min
March 04, 2024 High Blood Pressure and Stroke – Eddie Burnias
Eddie Burnias’ fear of doctors may have been a contributing factor to his hemorrhagic stroke when he was 53.
Highlights:
01:14 Introduction
01:46 The first signs of hemorrhagic stroke
09:10 Insurance challenges
14:56 Family support
23:33 Family dynamics and healthcare decisions
28:39 High blood pressure and stroke prevention
33:35 High blood pressure and its risks
40:20 Stroke Prevention in California
47:18 Nutrition, food choices, and health
51:44 High blood pressure and stroke challenges
58:15 Stroke recovery with a survivor and expert insights
Transcript:
Bill Gasiamis 0:00
Hello, everyone, thank you once again for tuning in to the Recovery after Stroke podcast. Whenever I have created something like a podcast episode, or I do a live presentation, and most recently, when I wrote the book, I get overtaken for some time by a sense of trepidation about what I’m delivering and how it will be received.
Bill Gasiamis 0:23
So it’s always a lovely thing to read a review, this time on Amazon, from someone who purchased a copy of my book, The Unexpected Way The District Became The Best Thing That Happened. The review was glowing, and it gave a five-star rating. The review titled Read a Must-read for Stroke Survivors and then continues with, I wish I had this book while I was in the rehab hospital and not two years later.
Bill Gasiamis 0:53
Bill is a great guy, which I agree with, check out his podcast. So thanks to everyone who has purchased the book already. And given the positive feedback. If you want to grab a copy, go to Amazon and type in my name, Bill Gasiamis In the search, or just go to recoveryafterstroke.com/book.
Introduction – Eddie Burnias
Bill Gasiamis 1:14
Now this is episode 294. And my guest today is Eddie Burnias, who has a fear of doctors so much so that he once opted to give himself six stitches when he injured his hand. And that fear of doctors ultimately contributed to Eddie experiencing a hemorrhagic stroke. Eddie Burnias, welcome to the podcast.
Eddie Burnias 1:39
Thank you. I appreciate it. Glad to be here.
Bill Gasiamis 1:42
Great to meet you, man. Tell me a little bit about what happened to
The first signs of hemorrhagic stroke
Eddie Burnias 1:46
So on Thanksgiving. I had my stroke at 23. So Thanksgiving being my favorite holiday, it sucked. It came on unexpectedly. I never even had any headaches or any clue that it was gonna come. My type of stroke was called a hemorrhagic. I hope I pronounced that correctly.
Bill Gasiamis 2:21
Was it a bleed in the brain?
Eddie Burnias 2:23
Yeah, it was in the back of my brain from where I’m told. So what happened is just at night, like it was a normal night, I had no symptoms coming up to it other than my high blood pressure. I got up to go to the restroom and the moment I slipped out of bed, I fell, hit my head, and got back up, thinking I just stepped wrong or I stepped on my side and they laid back down to go back to sleep.
Eddie Burnias 2:57
About an hour and a half later, I got up again this time no one’s home, my girlfriend, everybody was gone. And I get up again and again I fall. I think something’s wrong. You know, this is not normal. I try to get myself up. But now my whole right side is not working. It’s numb, I could feel it. But I can’t control it. My arm and my leg just weren’t doing what I wanted him to do.
Eddie Burnias 3:29
So I physically just got myself up with my left side and washed my face. And then I heard my stepson come in, in the house at the time. And I called him over to help me call 911 because I couldn’t even dial 911. I think everything was happening so fast. My left side worked fine. But I couldn’t comprehend how to use the phone properly. To put it in my left hand. It was weird. Anyhow, I got taken by the medics team. They took me to a hospital. Stayed there for five days. And I’ve been recovering ever since.
Bill Gasiamis 4:17
I was gonna say so you’re you had the phone near you. Are you able to tell the phone to make a phone call for you? Or?
Eddie Burnias 4:25
Yeah, the funny thing is, yeah, I brought I do have it and I have. The funny thing is that I have, you know, speed dial on the phone. So I called my mother and I told her, Hey, Mom, something’s wrong. I think I’m having a stroke. And she freaks out and hangs up on me. So now I’m like, I don’t know what to do.
Eddie Burnias 4:49
And that’s when I heard Michael come through the door. And I called over for him and we called 911. And that was taken care of but yeah, it was kind of it was kind of Have I like I’ve never experienced it. But I gotta say that this has been a life-changing experience. I mean, he’s changed everything.
Bill Gasiamis 5:12
Yeah, Eddie, that’s weird that you would call your mother instead of 911. And then she hung up on you the worst.
Eddie Burnias 5:22
Yes, you’re here, because you’re panicked. Let me backtrack because I’m a pretty physical guy. And I don’t like to I don’t like doctors. I don’t. I’ve given myself ditches. That’s how I wish I wanted to stay away from the hospital. But my mother, my mother knows that. Yeah. My mother knows that.
Eddie Burnias 5:45
So she panics when and when and when, you know, I’m calling her out. She’s like, What the hell is going on? So, you know, luckily, she got a hold of them while Michael laughed and they communicated and they worked out the details. But yeah, my mom was hung up on me at first.
Bill Gasiamis 6:03
I can’t move forward until you tell me why you what happened. And how does somebody give themselves stitches?
Eddie Burnias 6:11
Well, because I seem, to I grown up with my my stepfather. He was, he had lung cancer. And every time we went to the doctor, it was always bad news. So I grew up thinking that you know, the hospital was something that you go to whenever you something’s bad gonna happen. So I had it in the back of my mind. So one day, I didn’t even know we were outside playing or something. And I slipped and I gasped my hand.
Eddie Burnias 6:45
I don’t know if you can see it, but it gassed down. Middle East, right, right, my middle finger. I had to give myself six stitches. So and then on top of it. This is my I’m right-handed by given with my left hand, which wasn’t that good to experience. But actually, you don’t see a scar too bad. So I think I did pretty well.
Bill Gasiamis 7:08
Relations when you found your calling, that’s crazy. So yeah, I understand the whole I’m afraid of hospitals thing because yeah, that growing up and seeing, you know, somebody being unwell when they’re at the hospital can leave an impression, of course. But what you didn’t realize is he was going there for help. You thought he was going there to be unwell.
Eddie Burnias 7:39
Yeah, exactly. I know, like I attributed to every time we went to the hospital, it was like it was it was a journey for something bad. It was and there was never anything ever good. And we never went there and got good news. It was always worse or it just wasn’t a good experience for me as a kid. So like, I never, you know, even to this day, I stopped. I mean, I stopped going to the hospital.
Eddie Burnias 8:06
And I think that’s what led to my experience with my stroke is you know, my first off, I gotta say, it’s, you know, it’s a pleasure meeting gave you given us an outlet to do this. And to get out to the people to, you know, that are having similar situations. But mine, my situation, I think was preventable. Because I had high blood pressure.
Eddie Burnias 8:36
And I didn’t, you know, I wasn’t educated enough to realize that it’s really important for you to take your medicine and to keep your blood pressure down. Because I was I thought myself as Superman. I’m young. I was, you know, I’ve hurt myself, but I got it, I heal. But this thing was just I wasn’t, it wasn’t anything like I mean, I’ve experienced. It’s changed my life completely. I’ve been told I’m a nicer person, because you believe that I thought was a nice guy. That’s all.
Insurance challenges for Eddie Burnias
Bill Gasiamis 9:15
That’s crazy. So your stepson finally comes to find you call 911. You end up in hospital for five days, a place you don’t want to be there till you’ve had a bleed on the brain. What? So how do they go about resolving that for you or helping you with that? What do they do? What’s the if you’ve
Intro 9:37
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. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, doctors will explain things that you’ve never had a stroke before.
Intro 9:58
You probably don’t know what question to ask, if this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 10:20
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.
Eddie Burnias 10:40
Here’s the crazy part. We’re here I’m in California, just to let you know, background but honestly, it’s I didn’t get much. I mean, they came to my experience there they wouldn’t let me sleep. Obviously. I just was tired. For the first three days, I was exhausted. I just wanted to sleep. But they wouldn’t let me sleep they woke me up every hour. I got to get up and walk after the second day, I’d have to get up and try to walk.
Eddie Burnias 11:15
So about the third day, I’m walking with the limp, but I’m not but I am walking using one of their rollers. You know, but I am I can move. My thoughts are there. And even you know, even to this day I do get sidetracked quite easily after my speech is there. But sometimes I forget the words. Like I had no what I was saying, or what I was gonna say, but I just couldn’t think of the word. It’s kind of frustrating.
Eddie Burnias 11:50
But then I come back, they come and tell me that I had a minor stroke, if there’s such a thing, because if you haven’t had a stroke, there’s no fucking thing no excuse my French, but there’s no such thing as a minor stroke. It was scary as hell. So, I mean, it’s just, it’s changed everything in my mind. I can talk now I can I can move again, which is great. And I feel sorry for others who have gotten even more shares than myself.
Eddie Burnias 12:23
But that’s why I’m here because I wanted to get my story out and I wanted to let people know this, this, this can be prevented, especially if you if you’re in a situation like mine, where you know, you don’t like the hospital, you don’t like going to doctors, you got you you take your medicine when you’re having a headache and then goes away and he stopped taking medicine.
Eddie Burnias 12:44
Well, you know, when it comes to blood pressure, I you have to you have to continue to be stringent about it and make it a habit. Make it a part of your life. Because otherwise you’re gonna end up in situations like mine in the making even worse. And it’s I wouldn’t wish this upon anybody. But, you know, it’s it is a life-changing moment. But it also affects everybody around you, not just yourself.
Bill Gasiamis 13:12
You know, so, yeah. So you’re, you’re getting back on your feet. Your speech has come back. And your thoughts are okay. And then they send you home, day five or day six.
Eddie Burnias 13:29
Yeah, to day five, they sent me home. , I’m on my own to the Allegheny pamphlets to read. But it’s like, you know, I had to read it myself. The doctors were telling me they wanted me to go to therapy and stuff. But let me sidetrack, also, my insurance at the time. My insurance was I was weak. I’m going through a worker’s comp competency situation on top of everything.
Eddie Burnias 14:01
And I’ve been off since April of 20. Last year, on November 1, my insurance got canceled. So when my stroke happened I didn’t have any insurance so it was it was here in California. That is not a good thing. So basically, I’m getting pushed out the door as quickly as I can without any medical backing.
Eddie Burnias 14:30
I’ll get good now I got everything squared away now but it took me a good two months after the stroke to get you know my insurance in hand and all this and that but it was tough, you know without any without. If I couldn’t speak my job would have been worse. I honestly don’t know where I would be right now because you don’t get much help without you having medical insurance here.
Family support while dealing with high blood pressure and stroke
Bill Gasiamis 14:56
Yeah, so you were you went home alone. As in, you went home because your partner doesn’t live with you. Is that Oh, no, no, no,
Eddie Burnias 15:07
I take it back. I’m sorry, I went home with my family. So you know, not only that but what I mean, what I mean by alone is I didn’t have any doctor. The primary care.
Bill Gasiamis 15:18
Support, you just went home. Yeah.
Eddie Burnias 15:21
So I was, you know, trying to try to educate myself. And that’s how I came upon you, I went to the, I went to Barnes and Noble and tried to get books there, I went to the library and tried to get books to, you know, read up on my case in strokes, and when, because I have not experienced it, and none of my family has had one.
Eddie Burnias 15:42
But I came across a new one day on my website. And, you know, I, you know, I’m a hard listener now. So I’ve been listening to all your podcasts. And, you know, it’s, it’s, how should I say what you’re doing is a godsend, because you give people that that don’t know, like myself an avenue where we wouldn’t have won. If I get emotional.
Bill Gasiamis 16:16
I’m glad it’s helpful. And, look, when I went through it in 2012, I went home the same as you. The only difference was my insurance, all that kind of stuff was fine, as far as that was concerned. But we went home, with no idea, no clue what to do. What? How do you how do you be somebody who’s got bleeding in the brain? How do you like to interact with the world, it was a mess, right?
Bill Gasiamis 16:43
And in 2012, there was nothing on the internet, I couldn’t find any help you could find a book in the bookstore, but you couldn’t do anything. There was a lot of stuff about peripheral things you can do to support your weight, to lose weight to improve your fitness, you know, there was a lot of stuff around all the things that we needed, there was a lot of stuff that around all the things we needed.
Bill Gasiamis 17:10
But they weren’t sold as being specifically for people with brain injuries or with stroke, injuries, or any of that stuff. So I had to go on that journey myself as well, and learn and research and research and research and be my advocate, and try and find other people that were like me, it was impossible. So I thought stuff. I thought to myself, I’ll start a podcast and I’m sure I’ll find people to come on, I’ll learn from them, they’ll learn from me.
Bill Gasiamis 17:38
But I didn’t realize how, necessary it was I thought I was just solving a problem for me, I didn’t realize I was solving a problem for a whole bunch of other people. And I’m glad I am. I found my purpose through this work. Like I appreciate the fact that it exists. And that I get to do it. And it led to the book that I wrote, you know, it led to me putting together all that new information that I had about how can I heal from a stroke. How can I overcome that?
Bill Gasiamis 18:10
It led to me going well, other people need to know about what I’ve learned and what helped me I don’t know how I’m going to reach them. The podcast is a good way to sort of start and talk about the topics that I want to talk about with people but you can’t in a podcast you can put it all in one place like in a neat little package and give all that information to people but you can’t put it in the book. So yeah, that’s how it is.
Eddie Burnias 18:42
Order I just ordered your book. So I bet exactly what I got I have it on Audible but I ordered a hard copy. Also though so the hard copies come in the mail but I already started to divert your read half of it. There’s a lot of useful information in there I mean really, like first off I didn’t even know what type of stroke I had.
Eddie Burnias 19:05
Without your seven questions, I wouldn’t have known that like there’s those are very helpful because when you’re going through and just say I’m so new to it that I’m very in my third month of recovery so I’m a baby when it comes to this stuff I’m you know I’m soaking up knowledge here and here and there. And like you said 2012 2024 is not much there’s not much information on stroking out there.
Eddie Burnias 19:32
There’s probably more than there was in 2012 but there’s not much there isn’t there you know like you said it’s called a comparison guys compared to what you were you went to there is more but it doesn’t get to how you should treat this up, what you should eat, what steps you should take To whom you should talk to how to involve everyone around you.
Eddie Burnias 20:05
Because that’s everybody’s, it’s a multi everybody in your family. You know what I mean? So one thing is, it got us closer to my family, which is a blessing. You know. So the only bad thing for me that I can say is that in the experience itself, I’m still my right side of my body is still not fully cooperating.
Eddie Burnias 20:33
But it’s, I mean, I’m farther along than I was two months ago, I walk, you know, three to five miles a day now. We’re the first month I was, I mean, the first week, I was barely able to stand up. You know? I do.
Bill Gasiamis 20:49
So with the family with the family, you guys. But so you’re a nicer guy, you things with the relationships are better. Did that just happen? Or did you go after making those things better? What are you thinking in the background? Like, me, when I was doing that, I was thinking, I might not be here in six months, I better make everything good. How do you get to it?
Eddie Burnias 21:17
Well, mine, a CMO I am I’m gonna quit. You know, I’m stubborn. I’m a first-generation Mexican, American. And we’re not men don’t cry. Men don’t. Are we don’t show affection, we provide. And that’s, that’s how that’s how we show we love each other. But this has changed it. So you know, it’s gotten me more open.
Eddie Burnias 21:48
I talk more. Before I had an issue, I would, I would keep it in and commitment came to the Gaussian day know the word, but I can’t think of it right now. From pop. Exactly, exactly. Thank you, you remember, Nostradamus, but anyhow, we, we do that? You know, and it’s, it’s not good. Because it eventually eats that, you know, and it’s, it’s and people you shouldn’t only do are your family not you know, I’m all for therapy and therapists and, and help.
Eddie Burnias 22:25
But if you’re dealing with something, I think your family, especially the ones you love the most should be part of it, you know? And where I’m from, it’s not like that. It’s like you You don’t need to, you know, why do I need to tell you my problems, because you’re not going to be able to solve them I have to solve them. That’s the attitude that we know I come from. And it’s not that it’s not a good attitude, it’s not a good attitude to have.
Eddie Burnias 22:52
You know, vocalizing it vocalizing what I’m going through with my family is it’s open doors. You know, it’s gotten me, I’ve met people that I probably wouldn’t have ever met had not had the stroke. I’ve had I’ve gotten boost intel that I would never, ever, ever have had to ask and help me. Because I was not the kind of person to ask for help. I do everything myself. But, you know, what showed me like, Who’s, who’s there for you? You know, and it’s important to take and give back.
Family dynamics and healthcare decisions
Bill Gasiamis 23:33
Yeah, that’s important, what you just said, to give back. And that’s, that was what happened to me, I feel, I don’t feel obliged to give back. But I feel like I must give back. Because, like you people came out of nowhere. They did a whole bunch of things that I never expected them to do. People I never knew. And then it’s like, and on a second, I’m not sure I would have helped you if you were in a bad way. I don’t know if I would have done that.
Bill Gasiamis 24:03
Do you know, I really don’t know, if I would have stepped up, therefore would have been that kind of guy. So I appreciate it. And now I think I want to step up and be that kind of guy. I want to make sure that when people need help no matter who they are, if I can offer something, I don’t care what it is going to offer it instead of walking away and letting somebody else take the responsibility to take that job.
Bill Gasiamis 24:27
I’m happy to go and do what I can for people. It’s far better. I completely agree with you. What’s interesting about you is you see it from a Mexican background, right? However, I know that the Mexican family is the most important thing. And yet you’re in a family you’re in a Mexican family.
Bill Gasiamis 24:48
You guys are all close in a way by your communication is keeping you makes you was it making you kind of like a little more distant even though you’re close. to your family and your family’s importance, it seems like the lack of communication that you were doing was sort of keeping you a little bit outside where you wanted it to be.
Eddie Burnias 25:10
Yeah, well, it’s like I said, we’re close. But we’re close in in. We don’t talk, we don’t talk about our problems. That’s just something we just don’t do. Because you’re, you’re we know you’re a man, your oil, the way your raises you, everybody has problems, why put your problems on anybody else? You are a man who solves your problems. But sometimes you need that extra help, you need help to solve your problems.
Eddie Burnias 25:41
Everybody does, you know. And that’s, that’s the thing. So that’s what this has done. It’s, it’s been more vocal. It’s lately it’s, my wife says, now that I talked too much. So that, you know, she’s all in before you never do these. Tell me what you asked me. I mean, I can’t help but now. It’s like, I tell her everything. How I feel I’m feeling if I, if I you know, before, if I had a headache, or I wouldn’t feel well, I would, I would keep him to myself.
Eddie Burnias 26:14
And pretty much it’d be grumpy. You know, I think it would if it wasn’t I would take out the grub my illness or whatever up on my family that is that close to you. And now it’s different. It’s, you know, we talked, he has one skit about his uncle and his aunt, were you saying that? That guy that his uncle is sick, and his wife keeps telling them, You need to go to the doctor, and you need to get you know, get a colon check.
Eddie Burnias 26:47
And he goes, that’s not something that we need to do. I mean, I have nothing, nobody touched me there. And so she finally convinces him to go. And he ends up having into finding a tumor. And so now, he gets all he goes back, they go back home, and he’s all the See yesterday, I was all fine.
Eddie Burnias 27:06
Today, you made me go to the doctor and I got cancer. You still, it’s like, that’s how we are? We’re, we’re not, we’re not we’re not pro-pro hospitals or pro, like their fists or anything like that. Proactive. Yeah, or proactive. It’s just like, we were more reactive, we wait and or we’re waiting for the bad news to come. You know, we’re waiting for that, instead of being proactive, and then just concentrating on the good, because there’s a there’s a lot more good than bad.
Bill Gasiamis 27:46
And then if you know that something is there, you can actually take action and resolve it, maybe you can treat it, maybe you can prevent it from happening. You know, that’s the whole thing about knowing about your blood pressure needs, since I know about it, and I have medication, I can prevent a stroke from happening.
Bill Gasiamis 28:06
If I pretend that it’s not happening to me and that I don’t have a problem with my blood pressure, then I’m looking at the cliff, I could fall over the cliff any moment because I’m not paying attention to the sign that says don’t step over there. You were doing that, that you felt like it’s not such a big deal, you made a medical decision about what it means to have high blood pressure that you shouldn’t have made. The decision was, well, this is not a big deal. I don’t need to take my medication. Yeah, it’s very common, though. Very common.
High blood pressure and stroke prevention
Eddie Burnias 28:46
Yeah, that’s what it is. A lack of education is a lack of education. Because like I said, my, my, I think my stroke could have been preventable, because I had medication, I had everything at my hand at everything I needed to take care of myself, the help, I had the doctors, I had everything I needed, but I chose to be a knucklehead and not follow directions as I should have. I will take my medication when I start feeling down or start having a headache here.
Eddie Burnias 29:20
I would take my blood pressure medication and then they would go away and then I’d stop. And it just got to the point where I wasn’t taking I wasn’t checking my blood pressure either like regularly to see how high I was or how low I was. Now it’s like I take my blood sugar every day every morning just to make sure I’m taking my medication and my blood pressure is down to normal like it shouldn’t be.
Eddie Burnias 29:48
But I wouldn’t have known that and how important it is to, you know, monitor something like this. If I hadn’t had this job Um, the same thing with with my friends. You know, I got buddies that are same way, same age, close to the same age that are just as knuckleheaded as I am, who think they’re Superman, you know, who just think, you know, I’ve hurt myself, I’ll heal. But there are some things that you just can’t heal.
Eddie Burnias 30:21
There’s something that you can’t control that is beyond your means that is beyond your younger self, that you need someone with medical expertise to help, you know. And when free and the blood pressure thing that’s, that should be taught in school. Oh, man, that really should because it’s when they say it’s the silent killer. It is.
Eddie Burnias 30:43
Because I had no, I didn’t have any idea. Or even any, any, like, I should say, any symptoms leading up to my stroke. That night when I went to bed, I was normal. I was like talking to you just like I am now. And then I went to bed and all of a sudden, I couldn’t use my right hand. And I can’t use my right side. It’s that that’s how silent is because it got you like that.
Bill Gasiamis 31:19
When they gave you medication, and they realized that you had high blood pressure, do you know how high it was? To know when the?
Eddie Burnias 31:27
Yeah, my I was one? I was averaging 185. Over 130. So it was high. Yeah, it was high-end up creating crazy parties. Yes, last just last night. I’m over here at my buddy’s house. And we’re talking about this because I’m trying to preach to everybody now. One of my buddy’s brothers comes in and we check our time I bring my blood pressure checker with me all the time. Now I have one in the car.
Eddie Burnias 31:55
And we sit down and I have it here with me and the ugly man started shitting giggles and is trying to check your blood pressure. His blood pressure was 195 or 140. Like, oh my God, that’s normal. He says all that’s normal for him on that, you know, you need to go to the doctor you need to deal. You don’t understand you. You’re skating on thin ice here. Eventually, its dice is gonna crack trust me, you’re gonna, you know, something like that.
Eddie Burnias 32:28
And that’s how knucklehead I was like, these are my friends. And they’re just as bad. You know, when it’s because of lack of education. You know, it’s, it’s a hassle. It’s a hassle also to have to miss work or miss something just to go to the doctor and wait two hours, you know, to get it to be seen and to be treated. But, you know, if you look back, I’d rather do that than have them on the other side of the coin, where you’re getting hurt or you have to be in the hospital and then there’s nothing you can do.
Eddie Burnias 33:06
I could have gone the other way my stroke like this a minor but it could have been a lot worse. I couldn’t get it where I can’t speak because I’ve seen that, you know now, I’ve seen other people that have gotten more that when they can’t walk or even when they talk they’re there their speeches change. Half of their faces are numb a lot.
High blood pressure and its risks
Bill Gasiamis 33:35
Did your friend go to get it checked out afterward?
Eddie Burnias 33:39
The way that the way we got him to go. We told his wife, we had a goal. We had a goal above his head to go to the boss. Yeah, because otherwise, you know, he would have been he would have been deciding, you know, if I’m good. I don’t have a headache. I’m not I feel good. That’s exactly how I felt. You know,
Bill Gasiamis 34:03
many years ago, I was volunteering for the Stroke Foundation here in Australia. And they used to do a program where they would go into one of the big shopping malls. And they would set up a blood pressure check stand. And we would encourage people to come over, put their hand in the machine, check their blood pressure, and go away, you know, for free. It was no big deal.
Bill Gasiamis 34:30
People come over and then there’s guys come over and the blood pressure is 190 over 130 Yeah. And it’s like how do you feel man? Not feel good. Okay, so what we’ve found is that your blood pressure is 190 over 130. And what we suggest is that right now, the first thing you do is you leave and you go to the hospital and they’re looking at you like a weird because dude is trying to buy some stuff, you know, with, with a family or have come to dinner or whatever, and I’m going home.
Bill Gasiamis 35:09
And that is double what it should be. And you should go directly to a hospital and get that checked out because you’re at risk of stroke. And the guy’s got no clue that he’s at risk of stroke and doesn’t feel like he is at risk of stroke and probably never met anybody who had a stroke because of high blood pressure. And convincing him to do that is difficult. But hopefully, and then we can’t make them go to the hospital, we can’t call the doctor or anything.
Bill Gasiamis 35:42
But we can encourage them. So we give the guy a massive shock, just walking past and getting a high blood pressure rating and then being told that he’s at risk of stroke. So it’s hard to comprehend that, that if I feel okay, if everything seems normal, if everything is, is my everyday life, like if anything is just the same as it always has been, it feels very difficult to try and make that person bridge the gap from actually I’m not okay I need to take action. This is potentially very serious or life-threatening.
Eddie Burnias 36:25
Yeah, that’s the thing about blood pressure. It’s hard to comprehend the fact that because it doesn’t give you any symptoms, you’re not okay. You’re you know, you’re not, you’re you’re you’re you’re you’re right, you’re riding around with an expiration date on your hand. And I mean, we all are, in the long run, but we’re talking about this is going to shorten your expiration date. It’s like bad milk.
Eddie Burnias 36:49
Yeah, believe me, your milk in there for too long that milk is going to start to stink. You know, that’s what’s happening. You’re not taking into consideration the fact that internally, you’re not doing good. You might be all good on and 30 on the outside. But internally, it’s, you know, it’s a hot mess. And that’s what that’s where I was, I was, you know, I was a hot mess. I’m 54 years old. So I started before it, you know, I’m a little overweight. Now. I’m working on that now.
Eddie Burnias 37:22
But, you know, I just I barely started gaining weight the past 10 years, I was normally around 171 80 I jumped up to 190 Mamba to 10 now. But it’s a you know, I come from, I’m an athlete, I grew up playing basketball and football and baseball my whole life. So I’ve always been active. But the older you get, the less active you become, it’s just natural, and there’s nothing you can do about it. You can’t run as fast as you can, and you can’t jump like before.
Eddie Burnias 37:59
So it’s gotten to the point where now I just getting out and walking, you know it. I preach this to everyone. I mean, being sedentary is the worst thing you can do to yourself, to your psyche to those around you if you care, you know do for them. Because they’re depending on you know. So I mean, first it’s selfish not to start thinking about others like that, especially you if you love them, because
Bill Gasiamis 38:34
you’re depending on them, but they’re depending on you, but they want you around, and they don’t want to lose you early and for no reason. For somebody that’s preventable.
Bill Gasiamis 38:44
They don’t want to lose you, you know, I’m, I’m 50 this year, and my, in the last 10 years, I met that I’m at that stage where everybody who I grew up with when we were doing all the wrong things smoking drinking, all the people who continued to smoke and drink into their 40s and, and live an unhealthy life are all suffering now are all suffering heart attacks, of loss to friends in their 40s from heart attacks, or three, actually, three.
Bill Gasiamis 39:20
And more people are coming on board now that are having heart attacks. Who knew of other people in their circle the same age as us who had a heart attack 12 months ago and didn’t see that as a sign to do something about it? They were overweight, they weren’t eating well, they weren’t healthy, but it still wasn’t a sign to do something about it.
Bill Gasiamis 39:43
Yes. So strange, you know, to say to notice people I used to and now I see people that are like me who’s had a serious health condition and I compare myself and I say okay, there they came similar back right around two May they work a similar job to me. They have similar habits to me. They’re a similar age to me, and they’ve had this health condition that could be made.
Bill Gasiamis 40:11
I need to make sure that I’m doing the right things to avoid that I need to take what happened to them as a lesson and take action. Or do that now, but I didn’t do it earlier. Earlier when we were getting sick. I was like, what is gonna happen to me? It’s gonna Yeah, fortunately, happened to them.
Stroke prevention in California
Eddie Burnias 40:32
Yeah, exactly. When you have that Superman mentality where, you know, it’s like, yeah, they probably don’t eat correctly, or they, I don’t know, there’s always something that genetic on their side or something. You could always make excuses. There’s always something but you always do you know, it’s a it is going to happen.
Eddie Burnias 40:51
In May, you’re just, you know, you’re you’re buying time, is what it is. No one’s known Superman, no one’s untouchable. If it escaped, it’s gonna get you get your time, it’s your time. But if you can prevent, you know, you have to go to the doctor and incurring all these fees and bills and extra bills and stuff. You know, I, you got to me, you got to unselfish notch.
Bill Gasiamis 41:20
That’s the best way to go about it. Prevention is the best way. So yeah, you’re off work. Is that situation going to be resolved soon? Do? Do you know, when that’s going to?
Eddie Burnias 41:34
Yeah, I have a hearing for that. Next month on the fourth. See, this is all happening. So it’s like, I’m in the inception of everything. So you know, I’m, it’s great. But what I was gonna say is that it’s been a blessing for me that having a stroke has helped me. It’s allowed me to get closer to a family member, one of the most important, but it’s also allowed me to know I’m starting a support group.
Eddie Burnias 42:06
So I have I have, like two other friends that that they and I get together. That’s why I was at my friend’s house last night. And we get together and we, you know, well, now we’re talking about each other’s physical ailments and whatnot. Where before we would, we wouldn’t talk, we talked and watched a game or, drank or played poker or something. Now we’re getting no because it’s happening.
Eddie Burnias 42:31
I want my other buddy, he just, had, like you said, a heart attack. His was is, was a heart attack, I probably would, he would have told me what is similar to a heart attack. And they kept him in there for observation for two days. But yet again, he’s 15 years old, he and I grew up together, drinking, smoking, and doing what normal kids do.
Eddie Burnias 42:57
But there comes a time when you got to you got to stay and buckle down and not look at your physical ailments and take care of yourself. Take care of yourself for the future. We’re still here, especially here in California, where the cost of living is exorbitant. We work on it, we’re constantly worrying about money, you know, money that we have to have, you know, all the money in the world is not going to prevent you from having a stroke.
Eddie Burnias 43:26
And all the money in the world is not going to make you happy. Because I’ve gone I’ve been to that point, I begged I, you know, I made a million dollars a year, you know, for consecutive years. And I’m not bragging because that’s not what this is about. But it doesn’t make me any happier. You know, it’s not that money doesn’t solve everything. Money can help. But it’s not the end all be all. You know, because most
Bill Gasiamis 43:54
we’re wearing California are you in where our Bay Area? Okay, area. So in the Bay Area, you’ve started this particular support group. Are you Yeah, how are you finding people? What kind of people are you looking to find? There’ll be people listening here who are from the Bay Area, they might want to reach out.
Eddie Burnias 44:15
Yeah, so far, it’s like I said, it’s just, it’s just a couple of buddies and me who started meeting on Thursday night. And just just kind of to get them we’re starting to get the word out. We’re starting to make some pamphlets and get out my number I believe we have attached my numbers, you know, it’s available. And if anybody wants to talk or maybe you know, have questions, I’ll do my best to answer them.
Eddie Burnias 44:46
I’m not by any means a licensed physician or even an educated physician for that matter, but I do have a lot of experience between, you know, the people that I think experiences is the most. And the best education you can get. You know, somebody who’s done there has been there, done that, I would rather go, you know, and listen to them than somebody who’s learned from a book, you know not to get don’t get around that you don’t book learning is great.
Eddie Burnias 45:21
But if somebody’s had the experience hands-on first-time experience, I’d rather learn that. And that’s all it does. But like I said, when I had my stroke, I couldn’t find any information. It is so hard to find information regarding, you know, how to treat yourself or what you should eat.
Eddie Burnias 45:43
And then the doctors the word, my situation, I didn’t have the backing because I didn’t have any insurance at the time, then I didn’t know what I should do, or shouldn’t do, what I should eat, or what I shouldn’t eat. And that’s like your bookings you know, delves into that.
Eddie Burnias 46:03
And it, which is great. But I didn’t have that, you know, I’m barely getting it now. And I’m here to help people that, you know, before we even get to the point we gave you haven’t shown, let’s start with what you shouldn’t be eating, and we shouldn’t be. Because here in California, I mean, you’re from Australia, but here, you turn on the TV.
Eddie Burnias 46:26
Every commercial is fast. I mean, every commercial, it’s anything I’ve watched, I’ve watched television in Europe, and even UK and there’s no fast food, then they don’t even show fast food. Here every commercial is faster. You’re you’re getting a no. And during the United States, the food that they were being, you know, served is not good. It’s it would be it would be illegal in other parts of the world.
Eddie Burnias 46:59
But yet, we’re consuming this. And that, to me it is my mother, because that goes with everything that goes with, you know, that attributes high blood pressure, attributes to weight gain, attributes due to heart disease and cardiovascular disease.
Nutrition, food choices, and health
Bill Gasiamis 47:18
There’s a great book called Why We Get Sick. Okay, so for anyone listening. And it’s probably the best book for somebody who’s had a stroke to read about nutrition specifically. And when I read it, it was just solving. It was just explaining so many things. It’s by a gentleman called Benjamin Beekman Benjamin. And it’s available on Amazon and all those places, and probably you can get it from bookstores.
Bill Gasiamis 47:56
And it’s not a hard read, it’s a very easy read. It’s not a very thick book. But it just goes into so much detail about how one thing leads to another leads to another leads to another. It talks about how you get to experience high blood pressure how people get to become diabetic or how they get to have a heart attack.
Bill Gasiamis 48:23
And it’s all related to food. And one specific thing that he talks about is sugar, the amount of sugar that we consume, and why it’s important to decrease the amount of sugar as much as possible, how much of it we eat, and then how often we eat it. So Why We Get Sick is probably my first favorite nutrition book health book. And it’s really important to very it’s a
Eddie Burnias 48:59
I know, in your book, you mentioned like your pasta after you had your Shoku you know, the pasta wasn’t good for you, in itself in the era of food coma. Yeah. You know, and I feel you on that. Because my thing is not possible. Where I breathe, you know, we get the greasy meat, the tortillas, and all that.
Eddie Burnias 49:26
It’s and it’s you know, I as soon as I got out as soon as I was able to eat on my own, I wouldn’t got you know, the biggest burrito I can get. And man after I was I was out for two days, you know, and you you still feel healthy. You know, it’s it’s weird because you didn’t think I never thought about that before. You know, I would I would I would, you know, late nights. You know when I was younger, I’d go out late at night to kind of buy a taco truck.
Eddie Burnias 49:56
I don’t know if you are familiar with that out here but do I Find a taco truck and we’d be down tacos? You know? And that’s just leading to what you’re just saying. It’s a domino effect. And you know, I’m playing Domino’s with my life and I don’t want to do that, you know, but you don’t know any better.
Bill Gasiamis 50:14
I spent some time in LA, in 2000. And okay. And men’s house. I was in heaven in a way, because it’s not food that we can get. We can’t get Mexican food a lot in Australia. Although now there’s a Mexican taco place everywhere. It’s really popular. But I mean, we’ve seen a really big boom, but back in 2013, we hadn’t seen it.
Bill Gasiamis 50:39
You just buy the cheap Mexican type of food from the supermarket you bring it home and it doesn’t seem thing. But But I know what you mean about the taco stands the everywhere little shops, little windows in walls.
Eddie Burnias 50:56
So it’s like, you were where I’m from, we can get it anytime, any time of the day, any time of the night. You want to get a taco. But it’s a greasy taco, which you know, is that and then there’s different types of taco but it’s, it’s that well, we shouldn’t be doing it. And I think in school, this shouldn’t be happening with the kids is teaching them young. You know, Hey, man, you stay away from, you know, it’s okay.
Eddie Burnias 51:21
It’s okay to eat in moderation. But don’t overindulge. Don’t, don’t go in to have, you know, have one soda, if you’re gonna have a soda, don’t go have a six-pack. When you get older, you know, don’t go have 612 12 beers, and then go out and have tacos and greasy burgers at three o’clock in the morning regularly. Because that’s not nutritionists. That’s not good.
High blood pressure and stroke challenges
Bill Gasiamis 51:48
Do you have children?
Eddie Burnias 51:50
Yes, I do. Yes. How old are they there they’re grown, my boys are grown. My, my oldest son is 32. My youngest is 27. So there I have three of them. And my other ones in 1,000,029. But they’re, you know, I’m on them now. I wasn’t before you know, because they’re big, strong kids or you’re like I Oh, you know, I was when they were I was very you know, they’re all you’re benching 340 pounds. You know, and to me that’s how I grew up.
Eddie Burnias 52:25
I thought that was that’s how you’re strong. You’re strong you’re strong guy. But doesn’t matter how much cool you can live man. If you’re not taking care of your inner inner body and your inner soul. It’s not You’re not strong you’re not there’s no strong, there’s no amount of weight that’s going to give you is going to help you when it comes to subconscious.
Bill Gasiamis 52:46
Strengthen muscles comes with many, you know helps you with some things but there’s very you have to strengthen your character you have to have strength in your Exactly. In your emotional state, you have to have all sorts of different strengths.
Bill Gasiamis 53:03
And that external muscle look is kind of good for meeting the right girl or Yeah, showing that you’re good, good genes and you’ve got good quality reproductive organs and all that kind of stuff, but and it helps to keep you fit and well it does. It’s really important. But it’s not the only one we need to broaden out.
Eddie Burnias 53:30
And eventually, all that fades like everything else in life. It fades because I was a big man pretty I was a pretty man when I was a young kid. You know? Look at me now. I’m not as pretty I’m still pretty but that was you right? Yeah, but
Bill Gasiamis 53:50
um, but what was the hardest thing about stroke for you? So far? What do you think’s the hardest thing so far?
Eddie Burnias 53:55
The hardest thing for me is number one is finding information on how to know, about stroke and stroke itself what physically and mentally happened. That’s that was the hardest that is the hardest thing. Because I’m like I told you I still don’t know what type of talk I’ve had.
Eddie Burnias 54:16
I was barely told this by my physician because I barely got my primary care in order. But information number one, it’s hard to because there’s nothing there’s so lack of information out there that can help people prevent themselves from being in a situation like mine. That it’s it’s it’s almost criminal. It is because if you know to prevent someone from hurting themselves, by all means, man, let’s get it out there.
Eddie Burnias 54:52
You know, holding it back is not helping anybody or anything. But yeah, just getting the information is hard It was the hardest thing. The second thing is, the fact that you’re changing, you change. It’s like a light switch like I’m a different person. You know, I can feel it myself. I’m not as why, like I said, I’m more vocal, I am more emotional. I know that comes along with the stroke that, you know, the motions.
Eddie Burnias 55:25
Like I was like, read about we, you know how you would cry at anything, not in the same way. The other day, I was watching a movie and I was always crying, like, like a 12-year-old little girl. And my wife comes in and she’s like, What are you doing? And I’m all Forrest Gump man, Hey, Jenny, you know, she’s leaving him. So it’s changed and it changes everything. But it’s, you know, there’s, there’s good points, but you know, but it’s hard.
Eddie Burnias 55:56
This is an easy getting up and walking. The first week or two, when I started having, you know, you have to do it. But when I started doing it, it wasn’t easy. Because I could, you know, you I would walk but I would get a sore bath. My body would always have, it feels like you’re half of my body’s working and the other one isn’t. So you have to focus, where before you can just walk without thinking. But now it’s like, I gotta focus.
Eddie Burnias 56:30
Even to this day, if I you know, I can’t run that’s in that so much want to run that’s, that’s my goal is I want to be able to run, I can set my job. But I gotta focus on where I’m putting my foot because if I’m not, it just goes in a diary. It just does what it does. I can’t control it. I have a feeling on my arm. But on the bottom of my right leg, it’s like, you can pick me and I won’t feel it, you can hit me with a stick. And it’s like a mountain. I don’t like a little brush.
Eddie Burnias 57:06
But it’s like, you know, I have to focus on things now that I’ve never thought of before. Before it was just running was, you know, you run that walking, but now it’s like you got this, I can think of the steps I’m taking if I’m walking up a hill, or the pavement is uneven, I have to calculate that if I don’t have like a normal strip.
Eddie Burnias 57:29
It’s like when you’re walking in you forget to call on on the rug. Well, that’s happened quite a bit with you know, because I’m not, you know, I’m thinking that I’m better. And I’m thinking okay, here, I’m going in I walk, I’m walking on uneven pavement, but my mind is not registering it because I don’t feel on the right side, like I did before, you know, before you could feel it, or you can even see the heel coming.
Eddie Burnias 57:53
But you don’t have you don’t see a protrusion coming out of the concrete or whatnot. And it’s, it’s a process. So now you have to be aware of everything about your surroundings, where you’re going what you’re doing before that’s something you just don’t take into consideration, and that takes a lot more.
Stroke recovery with a survivor and expert insights
Bill Gasiamis 58:15
That takes a lot more to pay attention and do the walking and paying attention at the same time. What stroke taught you?
Eddie Burnias 58:26
So far, because I’m so new to where it’s taught me that, you know, life is shorter than we would think. And what do you do with it if it is hugely important? You know, all the money in the world, all the material things don’t mean anything. It’s it’s what you do to get emotional. But yeah, it’s what you do you know, everybody has a gift. And, and I can use it.
Bill Gasiamis 59:09
That’s important. So that’s leading to my next question, which is what do you want to tell other people who have had a stroke and listening to do I just started their journey? Or maybe they’re a few years into their journey? What do you want to tell them?
Eddie Burnias 59:26
That they’re not alone? That there are others out there like us and I know there are people that get like, Why me? Why my attitude? And I don’t want to be here. That’s not the answer. There’s someone out there for you and there’s people that will listen.
Bill Gasiamis 59:57
Reach out for help.
Eddie Burnias 59:58
You have to excuse me, I’m not used to getting emotional like this
Bill Gasiamis 1:00:04
It’s new. I know, I’ve been there. It’s good that you’re allowing yourself to be that way, man, it’s understandable, it’s uncomfortable, and it will get better. It’s also going to be okay that it’s days a little bit as well that you’re going to be a little bit emotional. It’s really important, I think, for anybody but for men to be emotional.
Bill Gasiamis 1:00:32
And you’re gonna want to think it does it permits other men in your life to be emotional as well. Like, I cry in front of the kids all the time now and my wife and my kids are 27 and 23. So they have an example of how you can be vulnerable, how you can cry if you need to cry, and how if something saddens you it’s okay to express it and to be saddened by it. And not to you don’t need to put a brave face on all the time.
Eddie Burnias 1:01:07
Like I was saying, My son is 32 years old. I’m 54 he barely saw me cry, for the first time. You know, that’s yeah, this whole situation, got us closer, it has opened doors that I never thought, you know, that probably would have never been opened before. You know, I’ll be honest with you, I wouldn’t have I wouldn’t have been as vocal before.
Eddie Burnias 1:01:37
My kids, you know, especially boys are just like, before, you know, like I’ve gotten, you know, they scrape themselves, I don’t cry, you know, you’re not bleeding, you’re fine. You know, that type of attitude. And it’s, and now I have grandchildren. And if I don’t want to, I don’t want that same attitude. We need to change.
Bill Gasiamis 1:01:58
Yeah, I know, you’re looking after your health and you’re making sure that you’re taking your medication.
Eddie Burnias 1:02:03
Yeah, definitely. Definitely. Am, with people like yourself, help with your book, and your podcast. You know, this is an ongoing journey, and when I’m glad to be on, and I thank you for your help.
Bill Gasiamis 1:02:20
That’s my pleasure. Mike, thank you so much for being on the podcast. Thank you. Thanks for joining us on today’s episode, get a copy of my book by going to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:02:44
For everyone who has already left an amazing review, be it on the podcast app that you listen to. You have commented on a YouTube video or you have left a book review. It means the world to me, that podcasts, books, and authors thrive because of reviews. And when you leave a review, you’re also helping others in need of this type of content to find it easier. And that is making a massive difference in their recovery.
Bill Gasiamis 1:03:14
If you haven’t left a review and would like to do so, just go to your favorite podcast app, leave a five-star review, and a few words about what the show means to you. If you’re watching on YouTube, do comment below the video I love receiving comments I respond to as many comments as I possibly can. At the moment I’m responding to all comments, so I would love to hear from you.
Bill Gasiamis 1:03:36
Subscribe to the show on the platform of your choice. If you’re on YouTube hit the notification bell so you can be notified of new episodes. If you are a stroke survivor with a story to share about your experience, come and join me on the show. You do not have to plan for them all you need to do to qualify as a stroke survivor. And you want to share your story so that you and other people can go about their recovery a little bit better.
Bill Gasiamis 1:04:03
If you are a researcher who wants to share the findings of a recent study or you’re looking to recruit people into studies, you may also wish to reach out and be a guest on the show. If you have a commercial product that you would love to promote on the podcast that is related to helping stroke survivors. You can also join me for a sponsored episode of the show.
Bill Gasiamis 1:04:23
Just go to recoveryaftershow.com/contact Fill out the form explaining which category you belong to and a little bit about yourself and your story. And I will send you some more details of how we can connect via Zoom. Thanks again for being here and listening. I do deeply appreciate you. See you in the next episode.
Intro 1:04:43
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. 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 protocols discussed.
Intro 1:05:00
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:05:23
The information is general and may not suit 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 1:05:30
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:05:30
While we aim to provide current quality information in our content. We did 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post High Blood Pressure and Stroke – Eddie Burnias appeared first on Recovery After Stroke.
1 hr 7 min
February 26, 2024 2 Years Of Hemorrhagic Stroke Recovery – Luka Jelusic
Hemorrhagic Stroke Recovery: A Comprehensive Guide to Rehabilitation
Introduction
Navigating the path to recovery after a hemorrhagic stroke is a critical journey that requires precision and dedication. In this guide, we delve into the multifaceted aspects of hemorrhagic stroke recovery, providing a comprehensive resource for individuals seeking insights into the rehabilitation process.
Understanding Hemorrhagic Stroke Recovery
Recovering from a hemorrhagic stroke involves a multifaceted approach that addresses physical, cognitive, and emotional aspects. Each stage of recovery requires a tailored strategy, emphasizing the importance of personalized rehabilitation plans.
Early Rehabilitation Measures
Physical Therapy
In the initial stages of recovery, physical therapy plays a pivotal role. Therapeutic exercises are designed to improve motor skills, balance, and coordination. The focus is on rebuilding strength and mobility, setting a solid foundation for further progress.
Speech and Language Therapy
For individuals experiencing speech and language difficulties post-stroke, speech therapy becomes an integral component of early rehabilitation. Therapists work on enhancing communication skills and addressing swallowing issues, fostering a gradual return to normalcy.
Cognitive Rehabilitation
Memory and Cognitive Exercises
Hemorrhagic strokes can impact cognitive functions. Engaging in memory and cognitive exercises stimulates brain function, aiding in the restoration of cognitive abilities. This tailored approach contributes significantly to the recovery of mental acuity.
Emotional Support
Recognizing the emotional toll of stroke, rehabilitation programs incorporate mental health support. Psychologists and counselors play a vital role in helping individuals cope with the emotional challenges that often accompany the recovery process.
Long-Term Recovery Strategies
Adaptive Technologies
As recovery progresses, incorporating adaptive technologies can enhance independence. Devices and technologies designed to assist with daily activities empower individuals to regain control over their lives.
Continued Physical and Occupational Therapy
Maintaining a commitment to physical and occupational therapy beyond the initial stages is crucial. Regular sessions contribute to sustained progress, preventing regression and promoting long-term recovery.
Hemorrhagic Stroke Recovery Success Stories
Real-Life Testimonials
Sharing success stories of individuals who have triumphed over the challenges of hemorrhagic stroke recovery provides inspiration and encouragement. These narratives offer a glimpse into the possibilities of a fulfilling life post-stroke.

Conclusion
In conclusion, navigating the path to hemorrhagic stroke recovery requires a comprehensive and personalized approach. By addressing the physical, cognitive, and emotional aspects of rehabilitation, individuals can embark on a journey toward regaining independence and a fulfilling life. This guide stands as a beacon of support for those on the road to recovery, emphasizing the possibilities and triumphs that lie ahead.
The Interview
Luka Jelusic experienced a hemorrhagic stroke at age 46. Recovery has tested him in many ways and the experience has taught him a lot.
Highlights:
02:01 Introduction
03:18 What caused the hemorrhagic stroke
09:43 Hemorrhagic stroke symptoms
15:11 Dealing with mental fatigue
22:23 The neural superhighway in the brain
29:03 Managing family emotions after the stroke
38:23 Hand-brain connection and its impact on recovery
43:48 How handicraft helps with neuroplasticity
48:51 Lessons from the stroke
56:16 Time management
Transcript:
Bill Gasiamis 0:00
Hello, everyone. Thanks once again for tuning in to another episode of the Recovery after Stroke podcast. Before we get started, I want to address something with you, that you may have noticed that is different about the show when you are listening on your favorite podcast app.
Bill Gasiamis 0:16
Because I have not yet been able to secure an appropriate corporate sponsor. To help cover the costs of the show, I have decided to switch on a feature offered by my podcast host, and that is to run advertising on some episodes before during, and after the interview. I do hope that they are not too distracting, and I would love your feedback if they are particularly if they are inappropriate or annoying in any way.
Bill Gasiamis 0:44
I have avoided switching this feature on for as long as possible. But because I have covered the costs for the show since 2017. And with the rising costs of keeping this podcast going, I have no other choice. I will be looking at ways to raise more funds shortly, which might include a version of the show which is a subscription base for those who prefer not to listen to ads, or perhaps a Patreon page.
Bill Gasiamis 1:12
But I will look at many different options and implement the ones that are best for me. And hopefully, they will be the best ones for the listener as well. The book is a perfect way of supporting me and the show while getting amazing value. And you can grab a copy of that by going to recoveryafterstroke.com/book.
Bill Gasiamis 1:33
Funds raised by the book already are helping to pay for some of the costs of the show. But we are a long way from being cashflow positive. The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery where from a personal growth perspective, stroke transformed into one of those life experiences that was on reflection, filled with many opportunities for growth and personal transformation.
Introduction – Luka Jelusic
Bill Gasiamis 2:01
Grab your copy today. This is episode 293. And my guest today is on the second year of his path to recovery after a hemorrhagic stroke. Luka Jelusic welcome to the podcast.
Luka Jelusic 2:16
There you go. Thank you.
Bill Gasiamis 2:18
Thanks for being here. Tell me a little bit about what happened to you.
Luka Jelusic 2:23
Sure. So about two years ago, it was two years, just a few days ago, I had a hemorrhagic stroke, which affected me quite a bit. And actually after hearing your episode 267 with Angie Read I thought I might contact you and just share my experience with it because it was something with Angie’s story that I could relate to in the way that she kind of what I understood, tried to just push through and kind of storm through or like forced the way to kind of getting better and that’s often not how things work.
What caused the hemorrhagic stroke of Luka Jelusic
Bill Gasiamis 3:19
You’re an interesting guy. Okay, because you’re a woodworker, and woodwork is all precision and time and care. And you can’t force the project to get it to the end because if you force it, it looks terrible, and nobody’s going to buy it. You were 46 when you had a hemorrhagic stroke, what caused the bleeding?
Luka Jelusic 3:44
Ah, well, there is no clear the doctors suspected AVM but then after angiography they found no AVM so they said well basically it just happened. And I think I had like a reasonably healthy lifestyle when it comes to usual factors like I’m not a smoker I’m not a drinker. I’m not obese, I’m physically active, and so on.
Luka Jelusic 4:15
But I was in a very, very stressful period in my life. And I am not a doctor and the doctor said well stress can kind of contribute to but not cause a stroke. But I do know that I had a very very stressful period in my life three years before the stroke I divorced my wife and it was my older daughter who didn’t take that quite well so I was quite worried about her.
Luka Jelusic 4:50
I had a stressful situation at my job a particularly stressful situation at work that drag for a couple of months also I entered a new relationship, which is now very stable and very supportive and great, but at that time were also several challenges there. So it was kind of this situation where you know, all the important areas, like if at least one of them is kind of good, you have somewhere to turn, you know if your job is a mess, but your relationship works, well then, you know, you kind of have a safe way there, but I felt quite a bit cornered. And at that point, and I’m sure that had a lot to do.
Bill Gasiamis 5:35
How do you respond to stress? Do you go quiet? Do you get loud and obnoxious? How do you deal with it when you’re cornered? How do you respond?
Luka Jelusic 5:48
Ah, I think that I think I would say normally, like, kind of problem-solving is a part of my work. And I can tell you a bit about what I do as well. So thinking normally cope with these things fairly? Well, but at that point, I think I started to feel like, you know, I just did everything wrong. And I’m a complete failure, and I’m just making a mess all around me. And it was some kind of some kind of given up in that, like, I just, it just seemed like everything I did was wrong at that point.
Bill Gasiamis 6:32
And if you’ve done it, if you’ve had a couple of bad decisions, or things have gone wrong, or people are blaming you for things that have gone wrong, that may not even be your fault. You do tend to sort of say, Okay, well, maybe I’m going to stop doing anything, right now I’m going to stop making decisions, I’m going to stop taking action. And it seems like you’re withdrawing, it seems like you’re, you’re not taking responsibility.
Bill Gasiamis 6:58
But in fact, I’m describing myself now. But in fact, what’s happening is, sometimes when everything’s turned to shit, the best thing to do is do nothing, and just wait until the wave passes over you and goes away. And then you can sort of reassess, and then start making decisions again, and start retaking action, and start testing the waters to see how things are going to go.
Bill Gasiamis 7:25
Now, in a difficult situation with people and in their relationships, you have to allow the other person to go through their process as well, their phase of how they deal with the terrible time. And if the two with different ways of dealing with a terrible, terrible time clash, then it can be chaos. And I feel like what you’re describing is that you might have felt like you were you had no control over influencing the situation positively. And losing control was also absolutely making it worse.
Luka Jelusic 8:03
Absolutely. That’s the the way I felt at that moment, like, like, I just couldn’t figure out a way to like, make things better for me or other people around me. So I resonate with the way that you explain these things.
Bill Gasiamis 8:25
And especially what your children, when, when it’s your children, you want to make it better for them all the time, you want to make sure that they’re not hurting, that they’re comfortable that they understand that they can appreciate your point of view that they respect your decisions, or that they can forgive you if you’ve made the wrong decision.
Bill Gasiamis 8:44
And children just don’t play that game. They have their way of dealing with stuff and it might not be correct, because they may not also have the skills to correctly approach something that’s bothering them. But it’s the wrong time to charge both of them as well, isn’t it? I mean, it’s impossible. Yeah,
Luka Jelusic 9:06
absolutely. I mean, it’s at some point, you also when it relates to children, that tendrils do other things as well, like you understand that you do live kind of in the long run, like you’re gonna live from today from today to tomorrow. So there’s a lot of learnings that happening today that are very useful at some later point in life. So often things are not what they seem in the moment, but you have to get there yourself, right? You have to kind of figure it out for yourself in a way.
Hemorrhagic stroke symptoms
Bill Gasiamis 9:43
And then when all this stuff is happening, it seems like the bleeding in the brain is also a circuit breaker to all this stuff that happened personally. How did you first realize that there was something wrong? Did you get symptoms? What was it like?
Luka Jelusic 10:04
Yeah, yeah, I did. So in the days before the stroke, I was extremely tense. Just like there was some kind of tension that I felt in my body and some kind of spasms, which were not like the usual thing for me. And then it happened actually, when I was in the shower, which I heard is not completely uncommon. If you’re in a long, warm shower, and if you have previously been tense, that can kind of cause a sudden change in your, blood temperature, pressure, and stuff.
Luka Jelusic 10:51
So I just felt that I almost fell in the shower. And I noticed that, like, my right leg doesn’t hold me. And then I tried to grab myself and my right, arms didn’t work. And I thought, Alright, there’s something weird going on. But there was nothing with my vision. And you don’t know much about stroke unless your doctor or your stroke survivor.
Luka Jelusic 11:20
But I thought, Okay, since like I see, on both my eyes, it’s probably not a stroke, it’s maybe something with circulation, whatever. So yeah, my partner took me to a local, small hospital and they said, Well, you probably had a small stroke, it’s probably not too terrible. But you need to go to a bigger hospital and get checked. And then then it came to a bigger hospital.
Luka Jelusic 11:49
And then they started doing tests. And then they said, Yeah, you had a, you had bleeding in your brain. And we’ll kind of keep monitoring you and see what’s next. And then at some point, they said it stopped. So there’s no like, further danger. And they, they they were kind of considering surgery, but they then decided not to do anything. And, and there was that.
Luka Jelusic 12:19
And then what happened was that I think it was like the second day I was in the hospital, I got sick with COVID and that didn’t help. Thanks. Because what I heard from a doctor is that it’s not a very scientific explanation, but I guess it kind of makes sense as COVID hits you where you’re weak.
Luka Jelusic 12:44
And I just had a stroke. So that probably made the fatigue worse than if it was just from the stroke, because that’s the thing that I struggled most with fatigue brain fog again, and confusion.
Bill Gasiamis 13:04
How bad is fatigue how much energy did you have to do things for say, the day?
Luka Jelusic 13:12
Well, I started initially, it was good, quite difficult. And actually, when I started now and then getting a good day, when I would feel kind of normal, almost normal. It was only then that I realized how extremely tired I was all the other time. So it was this kind of high point that made me realize, yeah, that that I am very different in the other times, so I spent three months of work.
Luka Jelusic 13:49
And then and then went back to work. And that was quite difficult. So I work primarily as a teacher at the university, I teach design and craft at two different schools. And what is kind of a big part of my work is so-called design-build projects or community participatory design-build projects.
Luka Jelusic 14:12
So I take a group of students it can be like 15 or 20 students somewhere to some kind of community, it can be like a small rural community or a hospital or something like that. We stay there for a month. And we design and build some kind of space for them. So it can be like an outdoor community garden or like an outdoor living room or something like that.
Luka Jelusic 14:38
And there’s a beautiful project. It’s a very meaningful thing to do. But it’s also extremely intense, very kind of engaged with people with decision-making at many different levels, and so on. So that was the first thing I did after I returned to work. And that was quite quite challenging. I mean, I had help from colleagues as well. But it was quite a push to do that.
Hemorrhagic stroke recovery and mental fatigue
Bill Gasiamis 15:12
Were you struggling with was it being getting clear information in knowing what to do? Was it in telling people? What steps to take? What are you struggling with the most?
Luka Jelusic 15:25
I think the most difficult thing is that intense social contracts are one of the things that wear me out the most. So, if I have like, whatever manual workshop task to do on my own, that’s great. That’s I don’t have a problem with that. But intense social contact and intense settings with many people, airports, train stations, and something like that.
Luka Jelusic 15:54
It’s like, it just sucks out the energy off me immediately, and computer work is kind of similar. But since the essence of these projects is kind of matching people and work desks and stuff, then just struggled with fatigue a lot in that.
Intro 16:17
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 16:42
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.
Intro 17:01
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. Download the guide. It’s free.
Bill Gasiamis 17:21
Yeah, very common. It’s exactly what I suffered from other large crowds. So going to sports events was very difficult for me going to a noisy event where there were a lot of people at a bar, for example, and then the lighting and then the noise and then was just impossible. And then also finding a way to go back to work. I did some work in an office for about three years to try and get back on my feet.
Bill Gasiamis 17:58
I remember the first six months were terrible, I had to get anything done. And I was constantly fatigued. I would even leave and go into the car and have 10 minutes of quiet time or meditations or more to try and sleep just so I could recharge and come back and do the rest of the day. It was extremely difficult. And I drove an hour to work and an hour home. It was just such a massive day I was wiped out.
Bill Gasiamis 18:25
But what I found over the three years by the time it got to the last few months before I left the place, I was able to sit in front of a computer for eight hours and do some work, and participate in those conversations. I didn’t need to take rest breaks, even though I would be quite fatigued and exhausted at the end of it, but didn’t need to do what I was doing at the beginning of the job.
Bill Gasiamis 18:51
So it improves. But yeah, it does take some time. The hardest part for me was other people around me not appreciating what I was going through how did you find dealing with other people who you’re working with? And how did they react and respond to you?
Luka Jelusic 19:12
Well, I have a very supportive partner, which helps me a lot in this especially since like, I don’t know if you struggle with that, but it’s gonna it was it took me quite a while to learn who I am right now and what are the things that wear me out and then what are the things that are that I should avoid and so on.
Luka Jelusic 19:39
But at work initially, I also felt just like you described like I didn’t look it’s just hard for people to understand. Like you kind of just expect automatically for someone to understand what stroke is about and all that. I mean that I guess that’s why you’re doing what you’re doing.
Bill Gasiamis 19:59
We don’t want them to ever really understand, we don’t want them to know.
Luka Jelusic 20:07
Like, for real yeah, exactly. So I think that was the case initially at my workplace. Like, it wasn’t like, it didn’t come with a lot of, oh, maybe support or understanding. But I think it is way better right now. And I had just one month ago, a kind of a milestone, or like a breakthrough moment after a visit to a specialist doctor who had a lot of experience with strokes, and all sorts of neurological stuff.
Luka Jelusic 20:49
So after I like, kind of just tried to push through and kind of work my way through the recovery and all that, and that didn’t really, it just like it just started getting worse, also, so the, like, the memory issues, and fatigue, and all these things that get it, I had a feeling doesn’t prove, but it’s on the contrary, is getting worse.
Luka Jelusic 21:15
So then in October, I had to take like a 50% sick leave. Which helped me a lot, because I could balance work and rest way better. But it was a month ago that I had talked with specialists who for the first time explained, like the specific nature of the stroke that I had. Because I think one big issue for my recovery was that I kept hearing from doctors like, Oh, you have like a small bleeding so like, it’s not a big deal.
Luka Jelusic 21:54
And fair enough, but I just didn’t understand like, why am I so tired? And why do I struggle so much, and I kind of kept beating myself up, like, I should be better and you know, come on, just get your ass out of bed and go out and do your things and all that. And, then for some time, you can sort of take it like, alright, it takes some time to recover and all that but at some point, and it just, you understand you’re hitting your head against the wall.
The neural superhighway in the brain
Luka Jelusic 22:23
And it was this doctor who said you had a small bleeding that’s correct. But you had at a very particular point in your brain. That’s a part which is called an internal capsule, which he called the neural superhighway. So it’s a kind of spot where old nerves from your body and the spinal cord pass through to the process in parts of the brain, and the other way around.
Luka Jelusic 22:51
So he said, If you had a real job in a factory, you wouldn’t have like, you wouldn’t feel a big difference from your life before. But we did executive function, like the planning tasks and the multi, multi-level decision making and all those things that are affected a lot. And that’s why you have the consequences that you have. So even a small injury, to that part of the brain can have very serious consequences.
Luka Jelusic 23:25
And he said I had a patient that had a stroke at the same spot as you years ago, but a bigger bleeding. And he said things were not funny at all. Honestly, he said you can consider yourself extremely lucky. So that was kind of like a big, like, aha moment for me because it is like almost like Okay, so like what’s happening? Like, it is kind of real, you know? So I think that explanation for the doctor, and then the same doctor called my boss at the university and explained to him what was going on.
Luka Jelusic 24:07
So from that moment on, I also had quite a different, understanding at my workplace of what was going on what a task I could do easily, and what tasks I should avoid. At least in the immediate future. So it was quite an important thing for me in terms of accepting what happened.
Luka Jelusic 24:33
You know, you read a lot about that, like the first step of recovery is actually to truly accept what happened. And I think for me, that was that moment and that kind of explanation from that doctor. Like against the thing that I’ve been hearing before, like, oh, we only had small bleeding so should be alright.
Bill Gasiamis 24:56
Yeah, it’s place. They tried to keep you calm and not too concerned about it, etc. But they kind of playing it down. As far as I’m concerned, you hear about people having an ischemic, transient ischemic attack a TIA, and they call it a mini-stroke. And I think it’s the worst way to describe it like it’s a stroke doesn’t matter if it’s Mini minor or major, it’s a problem in your brain, and you have to take it seriously.
Bill Gasiamis 25:23
And I think it makes people not take the situation seriously, sometimes. I love the fact that you got this doctor to tell you specifically what impacted what part of the brain was impacted. That’s why I have my FREE download of the seven questions to ask your doctor about your stroke, people go to the recovery after stroke.com. Download it for free.
Bill Gasiamis 25:49
And then what they get is they get questions that they can go, a form that they can take to their doctor, and it has questions. And one of the questions is, Where specifically in my head is the damage? And what does that part of my brain do? And what hopefully that does is create a conversation that’s very different from you had a stroke, you should go home and you should rest.
Bill Gasiamis 26:14
It’s specific and the caregivers and the family members who are there, then specifically know what you’re struggling with and why you’re struggling with it rather than guessing. When I went to the hospital, I was told I had a bleed in the brain, it was near the cerebellum. But that didn’t tell me what that impact was and what I should expect to be struggling with.
Bill Gasiamis 26:40
So everything that was happening, my wife and I were looking at each other going, is this normal? Is this what I’m supposed to be feeling? Am I having another bleed, we had no idea. And it made it uncertain. So we kept going back to the doctor, every time I’ve been to the hospital, every time something weird happened, or if I felt strange, who would strain in the hospital?
Bill Gasiamis 27:01
Because nobody explained anything to us. Most of the time we went to the hospital was a false alarm. But another two times the AVM bled again and wrote that up having brain surgery.
Bill Gasiamis 27:15
So what I would suggest is for people to get as much information as they can, if they’re not certain what’s happening to them after the initial incident, and if something feels weird, definitely go and get a second opinion and go to the doctor. Don’t wonder don’t don’t guess. But don’t play it down. It’s a serious issue with TIA. A small bleed in the brain is a bleed in the brain.
Luka Jelusic 27:40
Yeah, I think that’s extremely important. Because it can it can be like the symptoms can be so different depending on where it happens. Knowing what are the kind of typical things for the spot where it happens, can be so helpful for the recovery. One thing that I read, because that later was that the doctor explained to me that I didn’t know when reading about it with that specific term, the internal capsule stroke, and like, it fits.
Luka Jelusic 28:15
Like silly little things like decision making is one thing that I noticed I have a very hard time making decisions. It can be like stupid decisions, but it’s like I just kind of make up my mind. And I feel like an idiot like wait a minute, it’s like, whatever situation starts a big deal. Just make up your mind, but I can’t. And that’s one of the symptoms of a stroke in that area. It’s quite helpful to just know that.
Bill Gasiamis 28:46
In that moment when you can make decisions, even simple ones, do you recruit other people to help you make the decision?
Luka Jelusic 28:53
Yeah if I can. I tried to ask for help if I could, depending on what is the situation.
Managing family emotions after the stroke
Bill Gasiamis 29:04
So you’re going through a difficult family time with your former partner and your daughter and you had the bleed, how did that impact them?
Luka Jelusic 29:16
Well on the one hand and again, I’m not sure if that’s the right thing to do but I think I really kind of desperately want to stay functioning kind of normally like to continue providing whatever not only financially ways but as well but also in all the other ways. It’s just like to kind of continue with the normal life as much as possible.
Luka Jelusic 29:55
And I think for the large part I managed but at quite a big cost in terms of fatigue, and also, in terms of like the cost of my private life, because if you’re not the end of the week comes and you’re completely, you know, you’re a cucumber on a couch, so much of life, right. So I think that I guess that answers kind of the question because like, ultimately that does slow. Getting better in the long term, like pushing through and trying to do more than you can.
Bill Gasiamis 30:38
So are you trying to just pretend that you were, as you were before the stroke? Was that to try and make your daughter feel okay about the situation that was happening to you, because I kind of, was managing people’s emotions a lot? So I found that leading up to surgery. I was cool as a cucumber, I pretended as well, even when I was worried that I wasn’t worried about the surgery, because I knew everyone else around me was shitting themselves.
Bill Gasiamis 31:15
They were fearful about what was about to come. And to try and keep them calm. I pretended in certain situations that I was calmer than I was. Even though it was good for the surgery. I was trying to always keep other people relaxed, and calm. I was playing it down. Did you find yourself doing it? To sort of try? Definitely.
Luka Jelusic 31:39
Not with my not with my not with my partner? I think but with her, I was gonna, yeah. Not acting in or not playing. Like, I’m better than than I am. But in many other situations. And also, like, I know that in, in social situations in work. And all like, once I started getting tired, then most of the energy was spent on trying to look normal. And that says something stupid or not, you know, which which is, which is, which doesn’t make sense at all, I should just kind of bailout and take a rest or whatever, leave.
Bill Gasiamis 32:26
It’s so weird. But it’s cool and I hear it a lot. People just want to just go back to the status quo, and then they can’t, and then the gig is up, and they have to fall in a heap and hit rock bottom. And then they realize that they need to make some dramatic changes. And then people go, Oh, my gosh, I didn’t realize you were that unwell.
Luka Jelusic 32:52
Yeah. But there’s something with, I heard you say that in one of the interviews, like, ultimately, you don’t want to do things that got you in trouble in the first place. But I guess that’s what a lot of us just do until we come to a certain point, which then I guess marks a turning point in recovery as well.
Luka Jelusic 33:16
And that’s a point of acceptance of what happened and acceptance that you have to change things. And did you have to just go with what your body’s telling you and all that? But until that point, I mean, I hear in light, like a lot of stories that your podcast and other things that I read that people just tried to kind of, yeah, just get back to the former self as soon as possible.
Bill Gasiamis 33:41
It’s the worst one to go to because that’s the one that caused the problems. It’s the person who ended the situation. Like you. I was contributing to the bleeding occurring, by smoking, drinking, and working too much. Not resting enough not having any me time. I was angry. You know, I was blaming everybody for my problems. There was so much negativity in so many issues that I was creating that I was creating the perfect storm.
Bill Gasiamis 34:20
And this thing in my head just happened to be there. And I made the conditions perfect for it to go I’ve had enough and I’m gonna pop. And it was kind of like it’s like a circuit breaker. It’s what I mentioned earlier to you like for me, it was a circuit breaker. It was something that I look on now and think if it wasn’t for that I may have succumbed to a different condition than what I had a heart attack.
Bill Gasiamis 34:48
Who knows you know, the smoking and the drinking water have contributed to something positive. So I see it as like this weird blessing in disguise Yeah, it was hard, though. I’m not saying it’s easy. And I’m not promoting stroke it was button on. I’m now 12 years beyond the first bleed. And I look back at it and it wasn’t for that maybe I would have suffered something more serious.
Luka Jelusic 35:19
Yeah, I understand. And I’m definitely, especially lately trying to see the good side of it, like the way that it’s forcing me to change my life. There’s there’s a lot of good things about it. Now. And there’s also, you know, I don’t know if you saw it. There’s a short documentary about Ram Dass, on Netflix, who had a stroke he’s some kind of spiritual leader. So he had a stroke late in his life. And he says, this thing, which is a great sentence like, I don’t wish you stroke. But I wish you the grace that stroke brings, which was quite profound.
Bill Gasiamis 36:08
The best lessons I’ve ever had to learn were profound, I can’t, I couldn’t have learned them any other way. And it’s it’s disappointing that I had to have a stroke to learn them. But I’m not sure if there was a way for me to learn them. I’m not sure how else I could have learned the lessons that they brought that abroad. It’s really weird. So were you left with any deficits, other than the neurological challenges, were you left with physical deficits in your body?
Luka Jelusic 36:41
My right side is not as strong as it used to be. So I have good dexterity in my right hand. But there’s a difference. So especially when I’m when I’m tired, then it’s kind of kind of clumsy with it. But, but nothing else. Nothing apart from that. And also, I think, I think there’s a number when it comes to like, again, it’s something that ng read mentioned in your podcasts, like working with your hands is something quite important for the recovery.
Luka Jelusic 37:30
I am teaching designed to craft with my students. So there’s like this premise of the school, both schools that I work with is that design is not complete without the act of making. So wherever you design, you need to make it to understand the implications of it. So I’m both teaching design and design skills, as well as different making skills.
Luka Jelusic 37:56
But I noticed that that’s something like since I could do less off kind of executive functioning than I started to turn both in the way I teach, but also in my hobbies and stuff, kind of coming back to the workshop and going back to making in different ways. But it’s extremely beneficial for me.
Bill Gasiamis 38:23
I love that.
Hand-brain connection and its impact on hemorrhagic stroke recovery

Luka Jelusic 38:23
When I was younger, I was fiddling a lot with old cars. And then a little less than a year ago, I bought after quite a while I like I bought an old car, and 1968 car that needed a lot of work and fiddling with that thing for an hour or two per day. It does me good. Both in terms of kind of the like just the physical training of dexterity. There’s something else that happens with that kind of work.
Luka Jelusic 39:04
And there’s an excellent book, I don’t know if you know about it, it’s called The Hand by Frank R. Wilson. It’s called the full title is like the hand and how its US shapes the brain and something else in human culture. So something like that. But in any case, Frank Wilson is a neurologist to kind of brought forth this hypothesis, that brain and hand evolved together.
Luka Jelusic 39:39
It was the evolution of our hand that affected the change in the developmental forebrain that ultimately enabled the appearance of language. So kind of the basic premise is that the hand and brain are like, intrinsically connected in very beautiful and sometimes unexpected ways. So there’s something in that, like dealing with music, with crafts with these kinds of things I find extremely beneficial for my recovery. And I heard that from other people as well.
Bill Gasiamis 40:16
Yeah, well, I’m from a Greek background. So most of our talking is done with our hands. If you’re not moving your hands everywhere, you’re not communicating, you know what I mean? And I struggle to be on the podcast and not use my hands. So I have to put them down. And because it’s not efficient, the podcast.
Bill Gasiamis 40:41
But when you think about what you said, like when I think about it, instinctively. You, there’s so much not in them so much that comes from the communication with hands like there is our gestures. Like, often, when somebody’s talking emotionally about emotional stuff, they’re pointing at their heart, you know, when they’re freaking out in their head, their hands are near their head, you know.
Bill Gasiamis 41:09
And when something has, when you’re gutted by something when something has happened, and you feel gutted. And you know, you’re struggling with what just happened, you know, people are clutching their stomachs with their hands, it has their hands have a very significant role in nonverbal communication, you do see people’s hands do all sorts of strange things.
Bill Gasiamis 41:34
And if you don’t listen to people, if you’re not listening to their words, and you’re just observing their hands, it’s amazing where their hands go and what they do. And if you think about what you said earlier about design, right, so there’s one thing to do design an object and create a 3D render. And to be able to visualize it at the top, and the bottom is a certain amount of skills, a certain part of your brain gets activated.
Bill Gasiamis 42:04
And you’re able to visualize that before you render, then you render it, then you see it, your visualizations come to life, but then to use your hands and to craft, the raw object, the raw piece of timber, and to fine-tune it and make it look, the way you intended is another next level of ability and skills and the hand has to play a role in every stage it has to play a role in the rendering has to play a role in the construction, it has to play a role in developing the form of the objects.
Bill Gasiamis 42:44
And you can see how if somebody only ever did design, it’s like what they say about architects and builders, you know, architects they’re fantastic. All they do is put drawings on paper, but they’ve never built a house, what would they know about installing a window, for example, it’s kind of true, it’s that you miss a big piece of the process if you’re only involved in one step of the process.
Bill Gasiamis 43:14
And then the other step is done by somebody else. I think that designers and architects would be far better at their skill at their craft if they took a project from concept to result. Because then they’re able to understand where in the design, they need to alter to make the construction easier, for example, and vice versa.
How handicraft helps with neuroplasticity
Bill Gasiamis 43:48
So I feel like your job of say designing a space or putting something together and then being involved in the project is helping your recovery because Neuroplasticity has to happen in far more places in your brain than in somebody who just did the design work and then handed that project over.
Bill Gasiamis 44:11
I was telling a friend of mine whose daughter recently had a bleed in the brain. She had an AVM when she was 17. At the time, she was doing well now. But she was a diver. So she’s somebody who goes onto a board jumps up and then different heights, twists her body in the air, repositions at real lines, and then finds a way to land in the water to make the smallest splash possible.
Bill Gasiamis 44:43
When I was being told about the rapid pace of her recovery, I wasn’t surprised to hear that because she has far more neurons in her brain that are related to movement and how to achieve I have an outcome with her body than I do, for example, She’s 17, she’s got that advantage as well.
Bill Gasiamis 45:07
But she also has this additional skill. And even though she’s left with left-side deficits, numbness tingling, and proprioception issues, she still has all these other additional neurons that she can use to rewire the parts of her brain that were impacted. And to give her more ways to bring back things that will last, because there are just more pathways there already. Unlike me, I never dived in my life.
Bill Gasiamis 45:44
So I’m kind of sitting behind the eight ball. And this is the thing about exercise as well, where what you do with your hands on the car, I consider a form of exercise. It’s coordinating the brain, the hands, thinking, problem-solving, and decision-making, it’s doing it all, all at the same time.
Bill Gasiamis 46:03
It’s such, it’s like a sport, it’s like running around on a field and being physically fit. And then that’s why it’s so important to get into physical activity after a stroke. And it doesn’t matter what level of deficits you have, what you’re doing is you’re creating so much Neuroplasticity, so much potential for change and rewiring.
Luka Jelusic 46:27
Definitely and at the same time, it can be on a level that is manageable and not kind of overwhelming. But like I guess, for the right kind of brain injury and for the right kind of person that can be like really life-saving for the recovery.
Bill Gasiamis 46:48
Yeah, and I encourage it, and I love what this book suggests that the hand and what did you say the which part?
Luka Jelusic 47:03
So I read quite a while ago, I mean, I read because of my work and not because of a stroke. But he hypothesizes that it was the evolution of the actual thumb, not the hand is a hole, but the way that our thumb evolved, compared to other primates caused our brain to rewire, which ultimately enabled the appearance of language and other things, which makes us different than other primates. So you can kind of like twist that idea. And like possibly use your hands as a way to reclaim parts of your brain.
Bill Gasiamis 47:49
I’m reading the title on Amazon, I just found that on Amazon, and the title is The Hand: How Its Use Shapes The Brain, Language, and Human Culture. So how many years has it been now since the first bleed since bleed?
Bill Gasiamis 47:51
Two years.
Bill Gasiamis 47:54
And has the blood clot gone away from the blood that was in your head?
Luka Jelusic 48:20
I guess? Yeah, I had the angiography, like two months after the stroke, as I mentioned before, where they tried to see if there was AVM that caused it or something. And they said, Yeah, it’s like, it’s all good with that, there’s nothing more that we could do. So you should just kind of proceed with your whatever physiotherapy and stuff and like go on with your life.
Lessons from the hemorrhagic stroke recovery
Bill Gasiamis 48:51
Yeah, that’s a good place to get to. What has stroke taught you?
Luka Jelusic 49:04
I think definitely listening to my body or listening to my body or listening to myself, whichever way you want to put it in ways that I didn’t know how to do before and I’m still learning that big time. I remember when I was working with the physiotherapist I had quite an unusual and interesting person as a physiotherapist.
Luka Jelusic 49:31
So he told me, he gave me some exercises to do like in the gym, like walking in a straight line and whatever with support without support, one eye closed and stuff, but he told me you need to do things that are okay for you. That’s, that’s extremely important for you.
Luka Jelusic 49:54
Now you need to do what you’re comfortable with. As Alright, and then we’re doing this exercise and He tells me something, to do something where I almost fell. And he said, why did you do that? I said, you told me to say yeah, but I also told you that you need to do things that are good for you.
Luka Jelusic 50:18
And I remember that so many times, like, it doesn’t matter if he told me to, do something on the line. If that does work with me, it was such a simple, simple kind of trick to prove like you moron, like you just did something that’s not okay for you.
Luka Jelusic 50:36
And like you forgot it. So think that’s a big lesson to say stop and think, Is this okay for me? Now or not, and like you said, yourself, like, it’s kind of sad that it’s a stroke that has to teach you these things. But I guess there was no other way for that.
Bill Gasiamis 51:05
to happen, no other way. Very comfortable describing myself as a thickhead, I have to learn the hard way. And there’s no other way you can bring me to something gently and calmly and, and simply and it just doesn’t work. My brain doesn’t work like that. I have to get whacked over the head, so to speak. What was the hardest thing about a stroke for you?
Luka Jelusic 51:30
I think accepting the the new reality and accepting that life is not, you know, the life life and career and stuff. It’s not like a straight line or a straight path. And some things just happen in a way that you didn’t plan. Big time. Because, like about a year and a half, like roughly half a year ago, I was getting quite grim. Because the recovery just wasn’t going the way I kind of taught it.
Luka Jelusic 52:10
So it’s getting quite dark. In death and kind of, you know, just having these thoughts, alright, maybe I just won’t be able to do what I kind of really like to do professionally and in other ways. And you know, all these thoughts like, who’s gonna? Will I just stay alone will way have a job and I have a source of income? Will I have support from people? will it just be crippled that is not able to take care of himself and all these things? That can get quite tough.
Bill Gasiamis 52:51
Reasonable questions as well in the face of what has happened to you. They’re very reasonable questions, and your identities getting challenged, and your future is uncertain. And yeah, I mean, I think everybody who’s been in your situation has asked themselves the same questions.
Bill Gasiamis 53:09
And I found myself waking up in the middle of the night and going to dark places, you know, when everything’s quiet, and I’ve just gone to the toilet, and I need to go back to bed and I’m walking back to bed and then my brain just starts going everything shit, everything’s terrible. You’re never going to get through.
Luka Jelusic 53:31
The night is the worst man.
Bill Gasiamis 53:35
And I spoke to my psychologist about it and she told me there’s a specific time in the middle of the night it’s roughly between one and three in the morning or four in the morning. If you were in the middle of the night. It’s called the witching hour. The witching hour now I’ve heard of it before and I was like and what happens during the witching hours you guys dumbshit stuff that shouldn’t be thinking you start thinking and then you can cause a loop in a cycle it’s very common of the negativity.
Bill Gasiamis 54:08
And if you know about it, just tell yourself you’re woken up during the witching hour and you’re just playing the unnecessary loop in your head and you can just forget about it and go back to bed and then wake up in the morning and you’ll see things are different and that’s what I try to, I try and do that because my head never used to do that. That’s exactly
Luka Jelusic 54:35
That’s exactly what you described that hour and the certain kinds of thoughts that don’t normally appear during the daytime do appear that time and then they kind of mess up with you. But what I did find out is that that is extremely helpful, and I heard you talk about similar things. Are there good routines and good rhythms of things, and practices like meditation and journaling?
Luka Jelusic 55:10
And for me like, like, it’s extremely helpful for me to make a plan for every day, and then try to stick to it. And then if it works, it’s good. And then if I blow it, I kind of blow it, but it’s really good if I can stick to it, for example, not work more than two hours, in one go to work two hours, have a little break, then work more.
Luka Jelusic 55:40
And yeah, like doing a meditation every morning, journaling every morning, no screens in the evening, which was kind of difficult to stick to. But if I manage that, that helps me a lot. So kind of trying to develop good discipline around things that I know are helpful. That then also helps with having good sleep and not going to those dark places at night.
Time management
Bill Gasiamis 56:15
Yeah, I used to just be happy that I had enough energy to cook dinner for the family. When I was home alone. My wife was back at work and the children were at school, I would do nothing all day, just so that I had enough energy to go by the ingredients and cook dinner and make sure that we ate dinner together. That was it. And if I did that, I achieved my goals for the day, and I was happy.
Bill Gasiamis 56:48
And then as things started to improve, I found myself getting through some heavier days of work. So getting to the point where you know, that list, I made it a bit larger. And then by the time I got to three o’clock, I’d be wasted. And then there would be say, four or five or six things that are still on the to-do list. And I just knew they were not getting done.
Bill Gasiamis 57:15
That’s it under no circumstances, is it possible for me to sit down and do that, because if I do those things, I’m going to suffer for it tomorrow, or I’m going to not rest before bed, and I’m not going to get a good night’s sleep, and it’s going to be terrible. So I got good at feeling comfortable with saying, tomorrow’s another day, the list is still going to be there. I’ll just do it tomorrow. Instead of trying to get to the bottom of the never-ending list.
Bill Gasiamis 57:44
I mean, the list of tasks never ends. And it’s like, Alright, that’s it. We’re done. We’re done for today. And if somebody contacted me and said, for work, especially. And so what about this? What about they’ll be like, Yeah, can’t do it right now it has to happen. You have to wait.
Luka Jelusic 58:02
Exactly. But I think that was quite I assumed I was also quite learning for you at some point. But I know it was difficult for me because you know, at some point, you can have a feeling that you move through life because you don’t leave things for another day.
Luka Jelusic 58:19
But you do them, you do as much as you can you make good use of your time, and you do as much as you can in one day and not leave things for tomorrow. Because at some point, you just assume you have more or less unlimited sources of energy, especially when you’re young and all that. But then, after a stroke, it’s just a different distribution of resources.
Bill Gasiamis 58:47
And it depends on what the most important thing to you. So you can still allocate time to the most important things to help you move through time and achieve your outcomes. And it’s good at teaching you that that’s not that important. You don’t need to do that right now. And you can let that go.
Bill Gasiamis 59:05
And you could constructively use that time by doing nothing. For me, it was very constructive to do nothing, because that meant I rested, recharged my batteries felt better, and was able to interact with my family. That was all positive things. So doing nothing became very constructive. Very. You came a task that was useful to do, which I didn’t realize.
Luka Jelusic 59:37
Yeah, exactly. Yeah. This is a different kind of prioritization.
Bill Gasiamis 59:44
Less is more and that’s a good lesson to learn less is more especially when you have to use the energy in your battery efficiently and gently because you only get so many lines of battery for the day. Once they’re done, they’re done. That’s it. The next day is another day we’ll, we’ll reassess and go again. What would you like to tell other stroke survivors who are listening to this quite early on in their recovery, perhaps, or they’ve been going through for a little while? What’s your one piece of advice or encouragement that you’d like to give?
Luka Jelusic 1:00:29
Well, funnily enough, I heard that early on, and somehow, like, it just doesn’t get to you until it gets to you. But since my mom is a doctor, and she worked with some stroke patients in her practice, she said, you mustn’t get fixated on becoming who you were, before the stroke as soon as possible, but to understand that you can also be someone else and that’s okay.
Luka Jelusic 1:01:00
And I kind of understand that now. And although I heard it, I was told that right after the stroke, but it’s just a different thing, if you, you know, have kind of intellectual understanding of something or like if you understand something in your body and kind of in your bones. But I think that’s the most important thing. Like you don’t necessarily have to get back to who you were before. You were someone different. And that can be a beautiful thing.
Bill Gasiamis 1:01:33
Your essence is the same. But how you go about participating in the world or responding to how the world is, can evolve is an evolution? How would you describe it?
Luka Jelusic 1:01:40
Yeah, I’d say so. And you know, how the spiritual teachings tell you that letting go of things, or accepting what is is super important to move through life. I would say that. Once you take that in, that’s when a stroke can become the best thing that ever happened to you, like you say.
Bill Gasiamis 1:02:34
On that note, thank you so much for joining me on the podcast.
Luka Jelusic 1:02:38
Welcome, Bill. Thanks a lot for what you’re doing. I so immensely appreciate it. It extremely helped. It was extremely helpful to me on this journey to listen to many episodes of your podcast. I appreciate it immensely.
Bill Gasiamis 1:02:54
Thanks for joining us on today’s episode, get a copy of my book about stroke recovery from Amazon, or go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:03:15
Thank you to all those who have already left the review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of content to find it easier, and that is making their stroke recovery just that little bit better. If you haven’t left a review and would like to the best way to do it is to go to iTunes or Spotify.
Bill Gasiamis 1:03:39
Leave a five-star review and a few words about what the show means to you. If you’re watching on YouTube, you already know that I love responding to comments on the YouTube interview. I appreciate it. If you like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share, come and join me on the show The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:04:09
All you need to do to qualify as a stroke survivor. If you have a commercial product that you would like to promote that is related to stroke survivors’ recovery there is also a path for you to join me on a sponsored episode of the show go to recoveryafterstroke.com/contact Fill out the form explaining briefly which category you belong to. And I’ll respond with more details on how we can connect by Zoom. Thanks again for being here listening, interacting, understanding appreciating I appreciate you see you on the next episode.
Intro 1:04:46
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:05:16
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 1:05:40
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:06:05
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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post 2 Years Of Hemorrhagic Stroke Recovery – Luka Jelusic appeared first on Recovery After Stroke.
1 hr 7 min
February 20, 2024 A Case For More Physical Therapy After Stroke – Ann Sertel and Molly Hopkins
Unlocking Recovery: Physical Therapy After Stroke for Optimal Healing
Introduction
Embark on a transformative journey towards recovery with our in-depth guide on “Physical Therapy After Stroke.” Discover how targeted physical therapy interventions can significantly enhance the healing process, promoting strength, coordination, and mobility after a stroke.
The Role of Physical Therapy in Post-Stroke Recovery
Importance of Early Physical Intervention
Unlock the potential for optimal recovery by prioritizing early physical therapy. Studies consistently show that swift initiation of physical interventions after a stroke correlates with improved outcomes, emphasizing the critical role of timely rehabilitation.
Customized Physical Rehabilitation Plans
Experience a tailored approach to physical recovery. Our team of seasoned professionals conducts detailed assessments, pinpointing specific areas of impairment. From motor skills to mobility, our personalized plans address individual needs, ensuring a focused and effective recovery journey.
Comprehensive Physical Rehabilitation Strategies
Targeted Exercises for Rebuilding
Dive into our comprehensive physical therapy strategies, incorporating evidence-based exercises that rebuild strength and coordination. From range-of-motion exercises to resistance training, our approach aims to restore functionality, empowering stroke survivors to regain control.
Advanced Equipment for Accelerated Healing
Explore the integration of cutting-edge equipment in our physical therapy programs. From adaptive devices to specialized rehabilitation tools, our commitment to utilizing the latest advancements ensures an accelerated healing process, setting the stage for a quicker return to daily activities.
The Impact of Physical Therapy on Overall Well-being
Restoring Independence Through Mobility
Witness the transformative impact of physical therapy on mobility. By targeting specific motor skills, our rehabilitation programs facilitate a return to independence, allowing stroke survivors to navigate daily life with increased confidence and autonomy.
Building Confidence Through Strength
Experience the confidence-boosting effects of rebuilding strength. Our physical therapy interventions not only focus on physical recovery but also contribute to the psychological well-being of stroke survivors, fostering a positive mindset for the journey ahead.
Conclusion
In conclusion, our guide on “Physical Therapy After Stroke” is your key to unlocking a comprehensive and effective recovery journey. By emphasizing the importance of early intervention, personalized plans, and cutting-edge strategies, we empower stroke survivors to reclaim their physical well-being and stride confidently toward a healthier future. Dive into our expert approach, and let the transformative power of physical therapy pave the way to optimal healing.
The Interview
After a stroke, many elderly stroke survivors do not get enough physical therapy, this interview proves that more physical therapy improves recovery.
Highlights:
00:45 Introduction
03:30 Thalmic hemorrhagic stroke caused by high blood pressure
09:29 Memory issues
15:20 Biomechanics and physical therapy after stroke
19:18 Ageism in healthcare with a 70-year-old patient
28:02 The right amount of exercise
40:14 Ann and Molly’s reunion after 23 years
47:01 The importance of having the right coach
54:54 Knowing when to defy the odds
Transcript:
Bill Gasiamis 0:00
Hello, everyone, and thank you for tuning in again to another episode of the Recovery after Stroke podcast. My new book about stroke recovery is called The Unexpected Way That a Stroke Became the Best Thing That Happened 10 Tools for Recovery and Personal Transformation, and is now available to purchase on Amazon.
Bill Gasiamis 0:20
The book tells the story of 10 stroke survivors and the steps they took that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of the moments that could be reflected on as being filled with many opportunities for growth and personal transformation, and eventually led them to be able to say that stroke was the best thing that happened to them.
Introduction – Ann Sertel and Molly Hopkins
Bill Gasiamis 0:45
To learn more about my book, you can go to recoveryafterstroke.com/book. This is episode 292. And in a slight change of format, and to bring home the need for additional physical therapy beyond what is prescribed by doctors after a stroke when patients leave the hospital.
Bill Gasiamis 1:05
I am joined by Answer Tell a stroke survivor who was 70 in 2020, when she experienced a hemorrhagic stroke, and her physical therapist, Molly Hopkins, who has been working closely with and helping her improve her deficits, despite what doctors were telling Anne when she was being charged from the hospital, and that she shouldn’t expect much recovery after discharge. And SoTell. And Molly Hopkins, welcome to the podcast.
Ann Sertel 1:38
Thank you.
Molly Hopkins 1:39
Thanks.
Bill Gasiamis 1:41
So this is a little bit of a different version of the podcast. And the reason is that the two of you are intimately connected, not only in recovery, but also in a former part of life, and you came together and it was meant to be. And I’ll leave it at that for now. But first, if I could ask you, Ann can you tell us a little bit about what happened to you?
Ann Sertel 2:14
I don’t remember what happened to me. So I have to tell you what my husband has told me happened to me.
Bill Gasiamis 2:21
Is he a reliable source?
Ann Sertel 2:23
Oh, he’s very reliable. Yes. So on July 6, 2020. Nick had, no I had gotten up is that right Nick? Nick got up and then I got up. But Nick didn’t hear me moving around in the house. So he started looking for me. And he found me in our guest bathroom on the floor, wedged in between the toilet and the bathtub. And he tried to get me up, and he couldn’t get me up. And I was just babbling.
Bill Gasiamis 3:05
That’s not the first time I’ve heard of somebody experiencing a stroke and then being lodged between the toilet and a wall or between the toilet and the bathtub. That’s not uncommon. And do you have any recollection as to anything that led up to that? Do you recall being in the toilet or getting to the toilet or anything like that?
Thalmic hemorrhagic stroke caused by high blood pressure
Ann Sertel 3:30
No, I don’t remember getting out of bed or anything.
Bill Gasiamis 3:37
And what kind of stroke did you have?
Ann Sertel 3:40
I hope I say this right, Thalmic hemorrhagic is that right? Molly?
Molly Hopkins 3:48
It’s a Thalmic hemorrhagic stroke.
Bill Gasiamis 3:53
Okay, so you’ve had a bleed into the brain? And was there an underlying cause? Do you know did anybody got to tell you what the underlying cause was? Why did the blood vessel burst?
Ann Sertel 4:06
High blood pressure.
Bill Gasiamis 4:09
High blood pressure that you were aware of or unaware of?
Ann Sertel 4:14
I knew it was high, but not that high. I knew it was Elevate, I guess elevated is a better word.
Bill Gasiamis 4:21
Right. And were you taking medication at the time?
Ann Sertel 4:24
I was not.
Bill Gasiamis 4:25
Is that because you’re being naughty, or it’s because it wasn’t prescribed?
Ann Sertel 4:30
Wasn’t prescribed.
Bill Gasiamis 4:33
So it was kind of something that you’re aware of, you’re being monitored, but it wasn’t something that anyone thought was serious at that stage. Is that right? Correct. Okay. And after you have found what’s how does the story go? What ended up happening? How did you end up in hospital?
Ann Sertel 4:56
Well, Nick found me and then he called 911 and they came to our home and took me to Akron, Akron City Hospital. And we live in an area that has a lot of medical facilities. And I said to the driver, why don’t you just take me to one of these places? And he said, Oh, no, ma’am, you need level one trauma, you are in bad shape.
Ann Sertel 5:28
So, they took me to the hospital. And then when I got there, the neurosurgeon and his team, were there already. So we didn’t waste any time. And about an hour and a half after Nick found me, I was on the operating table.
Bill Gasiamis 5:49
And what did they do? Did they go through your head? Or did they go through another part?
Ann Sertel 5:55
Through my skull, I have a permanent shunt in my skull with a lever, and the fluid, or the blood, or whatever needs to be drained, drains down through my stomach.
Bill Gasiamis 6:12
Okay. So the surgery went well. And then you’ve come out of surgery and you are lacking some of your previous abilities. Were you suffering from some deficits?
Ann Sertel 6:28
Yes. Oh, Nick tells me it took three surgeries to get this shunt in me and get it draining. Because at first, they couldn’t drain it fast enough. Is that right, Nick? And so when, when the surgery was over with I could talk I’ve always been able to talk, but I couldn’t walk. I was paralyzed on my left side, completely paralyzed.
Ann Sertel 7:12
That’s the gist of it.
Bill Gasiamis 7:14
So you needed rehabilitation?
Ann Sertel 7:17
Oh, gosh, yes. Lots of it.
Bill Gasiamis 7:21
And you ended up in a facility? How did you end up in the facility you were in?
Ann Sertel 7:26
Well, first I had at-home therapy. And I had physical, cognitive, and occupational therapy. And they would come two to three times a week for like, 20 minutes or so and work with me. But after I don’t know, maybe a month or so. They said they couldn’t help me anymore and that I needed to go to outpatient therapy.
Ann Sertel 7:59
So we have a medical center just down at the end of our street, which has physical therapy. And so I started going there. Again, I went two to three times a week, 20 minutes each.
Ann Sertel 8:14
They worked with me, on the same three, cognitive, physical, and what’s other speech therapy. And I worked with them, it seems like a long time that I went over a year since I did that.
Bill Gasiamis 8:35
When was the stroke do you recall when the stroke was?
Ann Sertel 8:39
July 6 2020.
Bill Gasiamis 8:43
And did you have an awareness of how much time it was going to take for you to get better or to rehabilitate? Did you have any idea?
Ann Sertel 8:58
I did not know and I’ve often thought about that. I wondered if I would be better off knowing was going to take so long to get some kind of recovery or not. I don’t know which one would be better.
Bill Gasiamis 9:12
So you couldn’t walk alone? You couldn’t use your arm?
Ann Sertel 9:18
Correct, Yeah, I had. I had every medical device you could imagine I had a walker, cane, wheelchair, everything.
Memory issues for Ann Sertel
Bill Gasiamis 9:29
Yep. And do you have some trouble now with your memory?
Ann Sertel 9:34
Yes. Like I don’t remember very hardly anything about that whole situation. And sometimes I have a hard time now when somebody tells me something. I don’t remember it.
Bill Gasiamis 9:50
You don’t remember that something occurred and they’re telling you and they’re filling in the gaps for you.
Ann Sertel 9:57
Yes, that’s right. That’s a good way to include it.
Bill Gasiamis 10:00
Yeah, I can relate to that. And somewhere in this picture, Molly, who’s here also comes in, and then she starts to get involved in your recovery. Is that correct?
Ann Sertel 10:16
Yes, it is.
Bill Gasiamis 10:18
All right.
Ann Sertel 10:18
Let’s watch. It’s been a wonderful help. Wonderful.
Bill Gasiamis 10:22
I do hear that. I do hear that. And she’s blushing now. So let’s see if we can get her to tell us how she has been wonderful. But before she tells us that, Molly, tell me a little bit about what you do, where you work, how you came to be at the organization that you’re at.
Molly Hopkins 10:38
I’m an athletic trainer at Wittenberg University in the sports medicine department. I came to Wit 12 years ago, and I work with a variety of different sports, women’s soccer, women’s volleyball, men’s lacrosse, and men’s volleyball. And essentially, also, I’m an adjunct faculty member in the Exercise Science office in our lab that I’m in currently. So yeah, we have a wide variety of tools we have at our disposal.
Bill Gasiamis 11:10
And what’s the point of your role? Now, I’m asking bluntly, because I know nothing about like what a sports therapist does, what’s the point of that specific specialty?
Molly Hopkins 11:25
We’re like an offshoot of physical therapists or physiotherapists in European countries, but athletic trainers work primarily with athletes. There are other offshoots, but that’s our job. We take care of prevention, rehabilitation, you name it, acute care, chronic care, trauma, I do a lot of trauma. I deal with general medicine and primary care.
Bill Gasiamis 11:57
Trauma as a result of sports injuries happened on the field?
Molly Hopkins 12:02
correct that somebody essentially gets severely hurt, fractured bones, and things like that. Fine boarding, head injuries, I deal with all neurological stuff, we deal with it, too.
Bill Gasiamis 12:17
So the point of it is to either rehabilitate people get them healthier, or also get them back on the field.
Molly Hopkins 12:25
Yeah, we are pretty much what we always call surrounds the point guards to sports medicine, you get hurt, we’re going to see you the first day and we’re gonna be with you until you return to the field.
Bill Gasiamis 12:37
Okay, so your awareness about the way that the body moves, and what each muscle is supposed to do, and how it’s supposed to engage is important in that, I suppose in the diagnosis, trying to understand what the person’s lacking, and then also trying to understand how to influence the recovery so that the movement happens the way that it used to happen before, right? Is that accurate? Yeah,
Molly Hopkins 13:09
I teach biomechanics classes. And I analyzed gates, people walking in people’s running, I watched them move, I changed their shoes to make them run faster, better. We use ground reaction forces.
Molly Hopkins 13:29
We have cool tools here that we utilize to look at people’s walking gait and why they’re not using their muscles appropriately. And there are muscle imbalances. I mean, you name it, we can do it. We can look at it. We can look at ultrasounds, we look at MRIs, and we try to piece together the story, essentially.
Bill Gasiamis 13:55
That’s, yeah, go ahead. Alright, so I was gonna say like, so it sounds like what you do. Biomechanics is something that perhaps I’ve not yet come across in rehabilitation for people after a stroke. And that is interesting to me. Right. So I imagined that there would have been a little bit of biomechanics in the training of my occupational therapists, and my physical therapists when I went to see them.
Bill Gasiamis 14:29
But as far as specializing in that space, I’m not sure that they were doing that. I do remember my outpatient therapist walking when I had to learn how to walk again said to be going to take a walk so that he could pay attention to me and notice how I was walking and then he also video-dived for me so that I could look back at it.
Bill Gasiamis 14:57
Because I assumed that my left side felt weird, I assumed that I was also walking strangely. And because I thought I was walking Strangely, I was afraid to run, because I thought that I would cause an injury. And I might land on my foot incorrectly, etc.
Biomechanics and physical therapy after stroke
Bill Gasiamis 15:20
And he proved to me very quickly, that I was actually walking and running quite well, although I wasn’t, I wouldn’t call it a run, I’d call it a jog more than anything. And I wanted to learn how to run across the road in case there was a car coming in, I needed to get to the other side, that’s as much running as I wanted to do is biomechanics, from your understanding something that is focused on in the traditional physical therapy, occupational therapy rehabilitation space.
Molly Hopkins 15:51
So what I’ve learned through this whole process of the end is sports medicine should be utilized in stroke patients more often breaking down people as they come out of strokes and sending them to traditional physical therapy, or what I call neuro rehab, because this is a neurological injury.
Molly Hopkins 16:18
There are so many things going on there trying to address you getting up getting out of bed, and looking at just the day-to-day function. But once you start to essentially achieve day-to-day function, now we have to look at another level. And sometimes I feel like, that’s when they want to discharge right away. You could achieve, you’ve achieved all these grills, you can get out of bed, you can brush your teeth, you can. Yeah. And so they’re done with you. So they want to discharge you.
Bill Gasiamis 16:47
The bare minimum and the plateau. And do you feel like the goals that are set, are set quite low, the bar is quite low.
Molly Hopkins 17:03
I was shocked, I went to three advanced physical therapy sessions. And they were like, Oh, she’s doing so good. And like she is yes. I was like, we are just scratching the surface friends. We’ve got way more to achieve. Her gait was I don’t know how many videos of her gait I have, I will miss 30 videos of her gait from where we started to where she is now.
Molly Hopkins 17:31
And you know, I’m still picking her apart. Because I don’t like it. And I don’t like this. And I don’t like that we can change this and we can strengthen her hip muscles here will she be more efficient and her gait? Yes. But to be honest with you, Bill, if I gave them some of the stuff that hurt physical therapists, my student-athletes, to my coaches, they would be embarrassed and I would probably lose my job.
Molly Hopkins 17:59
Because it’s just not enough, it’s not enough, we got to do more, we got to make them more efficient, better athletes. So if you take a stroke patient, and model an athletic model after them, here we are, we’re gonna get bigger, faster, stronger.
Intro 18:15
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 18:40
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 18:59
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.
Ageism in healthcare with a 70-year-old patient
Bill Gasiamis 19:18
I hear you so Ann, now looking back on your experience with your recovery. How would you say? What level would you say your walking ability was? So from one to 10, 10 being amazing and one being needs a tremendous amount of work. Where do you think you were when you were discharged and they gave you the all-clear to go home? So to speak?
Ann Sertel 19:44
Oh, maybe to the most? Right?
Bill Gasiamis 19:48
Okay. Maybe at the time were you comfortable going home in that state?
Ann Sertel 19:56
I was Bill because I had Nick with me. And he has been a tremendous help. And he watches out for me. If I didn’t have Nick or somebody to help me, there’s no way I could be by myself or home.
Bill Gasiamis 20:14
Right? And then you’re saying Nick isn’t home? Is he ever at home? Not at home and you’re at home alone? Was he ever in a situation where he needed to leave you alone?
Ann Sertel 20:28
Sometimes he does, yes. Not very often, and not very long. But sometimes he does. Yes.
Bill Gasiamis 20:36
When Nick had left you alone, what? What are your movements like at home? Are you sitting in the chair and waiting for him to come home? Or you’re confident to get up and go to the bathroom and get back to your chair?
Ann Sertel 20:47
I can get up. I’m competent to get up, go to the kitchen, go to the bathroom. But I don’t go very far.
Bill Gasiamis 20:54
Yeah. And was that the case when you were originally discharged? Were you confident in being able to move about the house? on your own without Nick?
Ann Sertel 21:04
I didn’t know. Yeah, because I was confined to the bed.
Bill Gasiamis 21:13
So even though you went home, your condition was the state of your condition was that you were still confined to bed?
Ann Sertel 21:22
Correct. That’s right.
Bill Gasiamis 21:26
Wow. Okay, so you went home. And really, Nick had all the work to do, he had to make sure that you were sorted in every way, shape, and form, which would have been a difficult task because you wouldn’t have had all the resources available to him either, all the moving apparatuses, all the things to get you in and out of bed to transfer you from one position to another, he may not have had all of that available to him. Is that right?
Ann Sertel 21:58
We did Bill.
Nick Sertel 21:59
The hospital provided a wire lift, and wheelchairs, and the physical therapists were a big help, in guiding us to get her to walk again.
Bill Gasiamis 22:21
Okay, so there was some involvement now? You’re 73 at the moment, or were you 73 when all this happened?
Ann Sertel 22:29
I was 70 when all this happened.
Bill Gasiamis 22:33
Now, I want to get a sense of how you feel about your age. And the time that happened? Do you think age is playing a role in that whole? I can’t do this, or I can’t do that. Or this is not possible for me? Do you think you had an ageist approach to your recovery? And did the other people that were supposed to be caring for you and send you home? Do you feel that they treated you differently? Because you were older? Older than them perhaps?
Ann Sertel 23:03
I can’t speak for them. But yes, I think that’s true for me. Yes. Because you know, you get older, you just expect that, you know, your life is gonna change and things are going to happen. And you’re not gonna be as strong as you were 40 years ago or whatever.
Bill Gasiamis 23:23
And you’re kind of a you’re resigned to the fact that you’re getting weaker, and therefore as a result, you also may be getting sicker. And then it’s just part of the process part of life.
Ann Sertel 23:34
Yes.
Bill Gasiamis 23:37
Hmm. Interesting. Molly. You’re shaking your head.
Ann Sertel 23:44
She’s not buying that at all.
Bill Gasiamis 23:45
Yeah. Tell us about that. Because that’s a massive thing, right? You hear about it, my mum and dad, in their mom’s in her late 70s. My dad is in his early 80s. And what I get from them is and some of it is legitimate, I get it. And it’s a bit of a pain because you know, the older you get pains creaking, and this happens and that happens.
Bill Gasiamis 24:08
They’re pretty up and about my mum’s just had hip surgery, and she’s doing well. But there is a mentality that decline is inevitable, and we shouldn’t fight decline. We should just accept the client as something that’s going to happen. And I think that setup, then creates the out for those therapists who are lacking funding, who are lacking passion who are lacking resources to go, you know, you’re already on the way out. Why don’t we close with you and move on?
Ann Sertel 24:44
Yeah. Well, this is just my opinion, but also It bothers me tremendously, that the insurance companies run the health care system. You know, if your insurance won’t pay or, you know, you get so many visits, And then when your insurance is done with the visits, you’re done, whether you’re done or not, they’re done with you. Yeah. But that’s a whole different topic.
Bill Gasiamis 25:09
It is it is. That’s a common complaint. I’m 50. This year, we’re going to talk about everyone’s age. Molly, how old are you? 38. Just think 38 You think your age is the reason why you’re so positive and so confident that you can restore function to somebody? Or, and your lack of experience? Because you’re only 38? Like, how is it that you’re completely the opposite of the experience the Anns had, as far as what you think is possible for somebody who’s 70?
Molly Hopkins 25:48
Oh, I think age has no discrimination, you can be as accurate as you can be up here, and then you exit this world. You know, I see people that play golf, I’m a huge golfer, and they’re in their 90s. And they’re thriving, and they’re playing golf three times a week, and they’re having a great time.
Molly Hopkins 26:09
Yes, they have their ailments, your 90 Things are not going to move like they used to get, we get it. Yeah, we know that. But if you stay active, the we know this by science, you’re going to decrease the amount of aging that you do. And this is all the root of the problem they’re not out doing things.
Molly Hopkins 26:34
The aging process is going to happen 10 times faster. You leave people alone, you don’t rehab them appropriately. You let them essentially just disintegrate in front of you guess what’s going to happen? They’re going to deteriorate.
Molly Hopkins 26:50
This is not okay. And you know, in the States here, we have SilverSneakers. Now, here at the university, we have people who walk and work out every day, and they’re in their 80s or 90s. I mean, I see those people and I’m like they’re doing it right. They’re staying active.
Molly Hopkins 27:11
Yes, they’re still aging, but they don’t feel like if you compare two 90-year-olds, one that does something and the other one that does nothing. So you can prevent your visit to the nursing home by staying active.
Bill Gasiamis 27:27
Yeah, you can play a big role in keeping yourself out of the nursing home for as long as possible. And also being more stable on your feet and also being more active in the brain and continuing to heal and recover and rehabilitate. Now, in my book, I’ve written a chapter on exercise.
Bill Gasiamis 27:47
And because I’m kind of somebody who likes to avoid exercise, if I can, even though I do go I forced myself to go to the gym today, Molly, you’ll be happy to know.
Ann Sertel 28:00
But so did I.
The right amount of exercise and physical therapy
Bill Gasiamis 28:02
Congratulations. Thank you. Mine was about a 3540-minute session. What I learned while I was writing the book, what I learned was that exercise doesn’t have to be difficult, hard, arduous, and for a long amount of time, like how little exercise is enough to be beneficial, Molly.
Molly Hopkins 28:22
So what I always look back at is we talked about Master athletes here in the States, right? Anybody that was over the age of 38 is a master athlete. I’m a master athlete. So how much exercise do you need? Well, you go and you look, but to me, it’s 30 minutes, 40 minutes of what we call high-intensity exercise, we look at heart rates.
Molly Hopkins 28:53
You know, I’ve taught you how to be an athlete, we take her heart rate, we give her exercise, and we tell her you needs to do 30 minutes of exercise. It means you’re gonna have good days and bad days with exercise. I mean, it’s not everybody’s favorite. I struggle with my athletes getting them out there, you know.
Molly Hopkins 29:13
But I think you have to set a goal of 30 minutes, three times a week. And make sure that you’re also doing resistance training, keeping your bones strong, your connective tissue, your muscles, because if you’re going to decline the first thing that’s going to decline is your posture.
Molly Hopkins 29:31
We know this. Everybody’s posture is going to decline because of age. You know, you could have osteoporosis, you could have stress fractures, you could have you know, things that happen to you. Hip replacements, like your mom or knee replacements, I mean, things just wear out. But if you stay active during the exercise resistance training, and lifting weights, you’re gonna have a better life.
Bill Gasiamis 29:53
Uh-huh. So, my understanding about the string For training is that it improves bone density. And we’re not talking about being a bodybuilder, we’re just talking about pushing and resisting something a bit heavier than you could normally manage.
Bill Gasiamis 30:17
Perhaps you got somebody looking over you what have you. And also that assists in removing excess sugar from the blood and burning that up. Instead of storing it in the shape of fat cells, which means that that decreases the chances that somebody’s gonna get type 2 diabetes.
Molly Hopkins 30:39
Absolutely, like, essentially, what you’re doing was what we call the energy system pathways. It’s it’s exercise physiology-based, but essentially, you’re improving your diabetic chances. If you stay active, we know this with diabetics, their sugar levels are not going to be spiked as much, and we know that they can control your diabetics with exercise. So as you age, we know type two diabetes, for some individuals, it’s in the cards because of genetics, we know. But if we stay active, we can prevent it. That’s just how it is simple
Bill Gasiamis 31:19
as that. And I suffer from left-side weakness. As a result of that going to the gym can be a bit scary because I get afraid of losing my grip on one of the weights and it falling and injuring me or somebody else. So how do you go about giving somebody the confidence to go into the gym and push weights? What type of things can we do to overcome our doubt about our ability, I would say my left hand can lift, the same amount of weight as my right hand, but for a much shorter duration. So if I can get 10 or 12 reps out of my right hand, I can only get say five or six out of my left hand.
Molly Hopkins 32:07
Going back to him. I mean, it was a lot. We took her to an environment where she was so uncomfortable. You’re going to be uncomfortable. A whole new world, right? You’re being an athlete, right? And Bill, my
Ann Sertel 32:22
biggest My biggest fear is falling. Yep. My balance is not good. And you know, I know I have to get over that. But I’m with you. How do you get your brain? To not be afraid of that? I don’t know.
Bill Gasiamis 32:41
You do it anyway, it sounds like
Ann Sertel 32:44
I do it anyway. Yes.
Bill Gasiamis 32:45
Despite the
Molly Hopkins 32:48
Yeah, you take them to the gym and you show them easy things that they can do. Can they manage the weight? That’s the first thing. You are just introducing a simple thing. Like when I came up to see and the first time we went to the gym, and I said, Show me what you’re doing. She did. We just made small adjustments here and there to help them essentially facilitate her to be able to push the leg press machine and not feel scared. I yeah, I tell my athletes all the time, the first thing I’m going to do is make sure that you can protect yourself. Right? That is what we’re doing. We’re taking you to the gym so you can protect yourself. If you fall, are you going to be able to pick yourself back up? We’ve talked about this. Yes. And I want you to be able to stay at home and be safe. Protect yourself. That’s all.
Bill Gasiamis 33:44
Do you feel more confident? No easy remedy? No. And I’m sorry, do you feel more confident with your ability? Yes, I do. What is it done for your mindset?
Ann Sertel 33:55
Well, everything when I make it a step in the right direction, I feel like okay, you can do this, you can do a little bit more, a little bit more, a little bit more. But it is such a long process.
Bill Gasiamis 34:08
Is it also hard?
Ann Sertel 34:11
Yes, it is.
Bill Gasiamis 34:14
Is it the hardest thing you’ve ever had to do?
Ann Sertel 34:17
Yes, it is. And Bill, I taught elementary school for 40 years. So that you know this is a whole new ballgame for me.
Bill Gasiamis 34:29
And if I recall correctly, one of your students was the one and only Mali. Yes. So do you feel proud of yourself that you were able to influence the generation of human beings, specifically Mali who was going to be involved in your recovery from stroke all those years later?
Ann Sertel 34:49
I am so proud of her bill. I’m going to tell you this and I’m probably going to embarrass Molly But I don’t care I guess when Molly was in sixth grade, she struggled with learning. academics were very hard for her. And when I found out that she was a sports medicine person, I couldn’t believe it. I thought you’ve got, you know, you went to Wittenberg, and you’ve got degrees, and you’ve got all this training. I just am so proud of her determination and her effort and her perseverance, because I know it could not have been easy for her. It
Bill Gasiamis 35:28
sounds like a similar story. It doesn’t sound like somebody who wasn’t supposed to be able to achieve certain things. And many people would have said, shall never amount to anything. Can prove that it’s possible to recover and to overcome and to find ways to become educated to achieve great things in life. And it’s similar to stroke recovery. It’s applying a similar mindset to stroke recovery, isn’t it?
Ann Sertel 35:57
Yes, it is. I never thought about that. But you’re right. Yes.
Bill Gasiamis 36:03
Because you’re you had your doubters, and then Molly had her doubts, but the two of you have seemed to come a long way when you found a new way to approach this and perhaps not to listen to your data.
Ann Sertel 36:16
Yes, that’s true. Yes. Molly, do you agree with that, Molly? Absolutely.
Molly Hopkins 36:22
We’re such a parallel. It’s unbelievable.
Ann Sertel 36:27
Okay, isn’t it?
Bill Gasiamis 36:30
We have a good student, Molly, like and were you a nice student, not a good student, a nice student.
Ann Sertel 36:35
She was very old. Am I kidding? My parents?
Molly Hopkins 36:40
My parents are both teachers. So there was no deviating from the academics. But one thing that they did, they did always instill is just work hard. You know,
Ann Sertel 36:54
Molly’s hard workers. Yes, she’s a very hard worker.
Molly Hopkins 37:00
I mean, if we were not German? No, it was not. So it took a lot to just get through the elementary school level. And once I finally got to high school, it was okay. But college is where I thrive. And once you find your niche, that’s where you start to say, open up the engines, now you can do whatever you want.
Bill Gasiamis 37:25
Remember earlier, Malia said that I was very comfortable avoiding exercise and not going to the gym, etc. But I have found some amazing things that occur when I do what’s hard when I go against what my nature is telling me to do, which is, you know, run, run for the hills, and then come back. It’s like, yeah, do what’s hard, do the hard thing, the hardest thing I’ve had to do is recover from stroke, I’m still recovering.
Bill Gasiamis 37:55
And it’s been 12 years. But the next hardest thing I had to do was write this book, you know, it took four years to develop the model, to then write the book, and then to get it out. And I’m not academic, either, I hated school, and I’m all my teachers hated me because I made their life impossible. And it was because I was bored.
Bill Gasiamis 38:20
And I didn’t find what was interesting to me, and what my niche was. And I was labeled by teachers, as you know, one of my teachers said, I wish I could write in your report that you were stupid. And that kind of stuff. So, you know, I went through all of that. And, I didn’t believe that I was stupid. And I made it their fault.
Bill Gasiamis 38:45
I sort of used to say to them, Well, you know, I’m not learning anything important to me, or that I want to know, it’s your responsibility to teach me. And then what I realized later on in life was I had to seek out the things that I was interested in. And I had to seek out the people who would be my new teachers who were going to teach me those things.
Bill Gasiamis 39:06
When I did start doing that and started to find things that were interesting to me, I made it my passion, and what better way to discover yourself than to sort of become responsible for your learning and to do the things that you love and not expect other people to teach you.
Bill Gasiamis 39:24
Now for me, it happened to be stroke recovery, that brings in neurology that brings in physical therapy that brings all these things that are important to me, but are also very interesting. And I love hearing about everybody else’s journey with their recovery.
Bill Gasiamis 39:42
And of course, the podcast is about demonstrating how terrible things are when we start off the stroke recovery journey, and how they slowly gradually, you know, it’s at a snail’s pace, start to improve and we start to get better but we do need to recruit amazing people to help us we need to not give up and find us ourselves kind of saying, throwing our hands in the air when the insurance company, for example, says, well, that’s as far as I can get.
Ann Sertel and Molly Hopkins’ reunion after 23 years
Bill Gasiamis 40:16
So Molly, if I could ask you, for you to kind of rate the state of Ann when you guys first started to work together in her physical ability between zero and 10, where would you have her on the scale? When you first saw her?
Molly Hopkins 40:39
When I first saw her, it was hard. It was really hard to see you for the first time. Well, I and I hadn’t seen her in 23 years. That’s the killer of it all, I hadn’t seen her. I went up for a golf tournament, and I stopped by their house. And that was the first time I saw her.
Molly Hopkins 41:01
And I knew right away when I walked in the door what had happened because I could see it all. And then that was hard to take in. Because she means so much to me. And like, when I saw her I was like, holy cow. I was like, okay, and then Nick told me that she had just started following conversations when I saw her in May 2022.
Molly Hopkins 41:30
And she came to one of our soccer games, that September, and yeah, nothing had improved. And she was telling me that she was working so hard in physical therapy, and I was googling sleep terribly. I’m gonna read you like it. It’s three, because your movie, your progress progressing? You weren’t doing anything, but she was working so hard.
Molly Hopkins 41:54
And that’s what was the killer of it all. She said to me, like, the squad, the squad stopped growing. And she would tell me what she was doing. And I was just like, this is heartbreaking. Because if this was one of my athletes, I would say we need to go back to the drawing board. What’s going wrong? We need to reevaluate everything because I can’t put you out on the field like that.
Ann Sertel 42:20
That’s true.
Bill Gasiamis 42:23
So you’ve been working together for a little while now. How long?
Molly Hopkins 42:27
Almost a year over a year now.
Bill Gasiamis 42:32
How far would you rate the recovery? So from a three, how far along Do you think and have come on that journey?
Molly Hopkins 42:42
Well, I’ll give you Ann’s percentile. She says she’s 80 to 90% recovered. To me, I’m still picking her apart. I still have way more to accomplish with her. I write her exercise programs for two months. She works out with those twice a week. And then she goes to yoga and then lifts.
Molly Hopkins 43:06
So she works out five days a week. The Yoga is for recovery, which is on Mondays and Fridays. But then meat and potatoes are Tuesdays, Wednesdays, and Thursdays. And I’m still picking her apart because I’m not happy with it. So to me, it’s like a seminary. She’s functional. But is she my functional? No, I want more. To be honest, I want more.
Bill Gasiamis 43:33
Sounds like a hard taskmaster. Were you that hard on her when she was at school?
Ann Sertel 43:38
I don’t think I was No. Was I Molly?
Molly Hopkins 43:44
Ann was so good in the classroom. I told my athletes like Ann is how I talked to them. I’m firm, but I’m fair.
Ann Sertel 43:58
That’s it. I tried to always be firm and fair.
Bill Gasiamis 44:01
Yeah. I want to ask you, Molly, because one of the things that’s interesting is that at around the age of 30, so maybe around 20 years ago, I decided I wanted to be a life coach. And I went and did a course. And when I went and did this life coaching course, it was at the suggestion of my counselor, and my psychologist, she said, You should be a psychologist and I said, that’s gonna be a lot of school.
Bill Gasiamis 44:31
Like, I don’t think I can handle that. Maybe I’ll do something where I’m helping people but I don’t have to go through six years or seven years of university. And I had been in counseling say for about four or five years by the time I became a life coach.
Bill Gasiamis 44:47
And I started helping people along that kind of how do I overcome myself kind of journey that they were on and if I wasn’t qualified to do the psychological stuff, but I was qualified to teach people the next step, this is the next step, go and do that. And then let’s do the next step and the next step. So it was kind of holding their hand keeping them accountable.
Bill Gasiamis 45:09
And what I realized was that one of the things that I hadn’t had was a life coach. So I hadn’t had somebody coach me through the steps that I needed to achieve, to get to my goals, whatever they were. And I was getting counseling, and I was handling my mental health.
Bill Gasiamis 45:23
But I didn’t have somebody as a mentor to guide me to take me through the process of evaluating what I was doing, giving me honest feedback, and then helping me reassess and move on. And what I did is I ended up getting someone to be my life coach, while I was seeing my counselor, and I kind of matched the two.
Bill Gasiamis 45:44
And they’re completely different roles. One of them helped me talk things through, and the other one helped me take action and take action steps toward my goal, whatever that was. And then, as I’ve continued, helping people through my coaching role, and then my recovery after stroke coaching this, some of the clients that I deal with.
Bill Gasiamis 46:06
What I realized is that we don’t have that normal people don’t have compared to athletes, we don’t have somebody next to us for our entire life going, you can do this and improve and you can stop doing that, and you’ll get a better result. And athletes, even Roger Federer, even Rafael Nadal, who are the world’s Joker, Djokovic choose playing in my hometown right now.
Molly Hopkins 46:37
Yeah.
Bill Gasiamis 46:38
Those guys are the best of the best in their chosen sport. And yet, they still have a coach next to them. We have the worst at the worst of our chosen life. And we have nobody helping us to guide us through because we don’t see the value in that. So I want to get your sense of that.
The importance of having the right coach in physical therapy after a stroke
Bill Gasiamis 47:01
Like, why is it important to have people with you along this journey, even at the age of 70? Because I assume that Anne’s not going to get away with it. For the next however long you guys are around each other she’s going to be whether she likes it or not me to go to the gym and train one way or another. Why is it important to have people next to us?
Molly Hopkins 47:26
I don’t know. I feel like I’ve been in sports all my life. And I feel like I guess if I could use an analogy, a caddy, right? A golf caddy, right? We need somebody who gives you the yardage and tells you this is what we should do. These are the obstacles in the hole. And this is what we should do.
Molly Hopkins 47:57
That’s what every stroke patient should have. It’s a social worker, a physical therapist, a nurse, a physician, these people have no idea what is ahead of them when they come out of that hospital. That’s true. Charge paperwork. Yeah, she got her discharge paperwork.
Molly Hopkins 48:15
She was sent to a rehab hospital, a rehab hospital center, it’s almost like good luck. Yeah, it is. And these people have no clue. And they come in with home health care, they get discharged, they get moved on like somebody has to say, you’re doing the right thing. And if that’s coaching, then that’s what it is.
Molly Hopkins 48:39
I’m calling place to Ann and I’m saying like, let’s run this play because this is what’s going to make or break you. And I think more and more people need to look at strokes and model their rehabs if it’s not an athletic model. It’s how we are working with athletic populations. If I could put it that way. I just think these poor people, you lost your left side Ann lost her left side.
Molly Hopkins 49:12
They have no stability. They have no idea these poor families have no idea what’s going on. They have just been put through the wringer. They don’t know if their loved ones gonna make it or not. They’re so scared. So it’s a lot of moving parts, It’s a lot of tough decisions, a lot of tough questions, and they’re not ready for it. They’re not prepared for it.
Ann Sertel 49:36
And Molly, you don’t even know what questions to ask.
Molly Hopkins 49:40
No, no, no one’s counseling them. So yeah, they should have somebody walk into that room after these people have been diagnosed with strokes and say, This is what’s going to happen next. Do they have all the answers No, but I don’t have all Insert. I tried to do the best for my athletes and the best for but I don’t have all the answers. That’s why we research. What’s gonna make you better?
Bill Gasiamis 50:12
We’re all winging it. But you kind of need a little bit of guidance like you need to have some hypothesis and some kind of path to go down to try it to see, is this right? Is it wrong? Will this work? Do I enjoy this, and then and then be able to reassess and then make another decision and then keep going in an in the same direction or a different direction, you know, minor micro-adjustments to sort of continue towards the goal, even though you’ve kind of been taken off the path a little bit.
Bill Gasiamis 50:45
That’s one of my biggest challenges is that people find the podcast and they it’s, sometimes it’s their first source of, Oh, my God, this is normal, or, Oh, my God, I can do this, or Oh, my God, I can try that. And it’s really strange, that I’m the first source for them that they stumbled on that helps them navigate their recovery.
Bill Gasiamis 51:11
And I’m glad that I exist. And I am because that’s what I think I was missing. And that’s what I was trying to create, not realizing that I was succeeding and creating that for people. And what these stories do specifically and story and your story is that they offer more hope it offers hope.
Bill Gasiamis 51:35
And an example, that you guys are setting, that perhaps other people who are not 70 that might be in a similar situation, might be able to go okay, I know one thing that I can do, that’s going to make my life better. And that doesn’t have to be a five-day-a-week regimen that might even just be 30 minutes, one day a week, more than what they were doing beforehand.
Bill Gasiamis 52:02
And a little bit of guidance in the gym, from somebody just to get them on the right path. And then maybe every month or every two or three months to get that feedback, that coaching so that they know you’re on the right path. Or you can be more efficient like this.
Bill Gasiamis 52:20
So you can get better results like that. Because there’s one thing about working hard in the wrong direction. It’s so shit when you work hard, and you’re going in the wrong direction. It’s so discouraging that it the good to work hard and be going in the correct direction.
Molly Hopkins 52:34
Yeah, you need a full team. And I mean, the stroke team should start from the neurosurgeon down, you survived the stroke. Now, this is what we’re doing next. And you need a full team of qualified individuals to say, Yeah, this is this is right, you’re moving in the right direction.
Molly Hopkins 52:55
But here’s the biggest thing when they go from physical therapy discharge, and there are still deficits, what are we going to do with them next? That’s when there should be that relay point. Okay, you’re done with physical therapy, but we’re going to relay you on to our strength coach.
Molly Hopkins 53:17
So, he’s going to help you with your strength. And I model it. What I’m doing with Ann is when I went to that last physical therapy visit with her, I literally said to the physical therapist, it seems like we’re not going anywhere here. And I said it point blank to that guy and I said, I think we need to let her go and let me have her.
Molly Hopkins 53:37
And I took her over. And that’s what we do here. We have our athletes go to physical therapy. But then at that point, when they’re ready to make that return to play, they’re not ready to go to the field. They’re ready to come to me. And now I start to put the finishing touches on them.
Ann Sertel 53:55
I agree, Molly.
Molly Hopkins 53:57
That’s what we need. You need the finishing touches. They’re not ready to resume full activity. They’re not. We know that. Like, it’s just where we’re at. But you need more work done.
Bill Gasiamis 54:11
Yeah, yeah. So and going forward? How confident do you feel about your ability to continue to improve?
Ann Sertel 54:22
As long as Molly’s involved with me, I’m very confident because I feel like I’ve made huge gains with her. If I was on my own, probably not much.
Bill Gasiamis 54:34
Would you have accepted the narrative “we’re done with you? We’ve got nothing more to offer. Go home and get better on your own?”
Knowing when to defy the odds
Ann Sertel 54:51
Yes. And I didn’t know what to do. You can’t get better if somebody doesn’t show you?
Bill Gasiamis 55:00
Yeah. That’s the challenge, isn’t it? It’s that whole, going back and accepting the word of somebody who might be wrong with what they’re saying. And then you’re sitting in a situation that you shouldn’t be sitting in and suffering unnecessarily. Because you’re already suffering because you’ve had a stroke, and you’ve got to deal with all that stuff.
Bill Gasiamis 55:23
And then dealing with something that’s not true. And believing that it is true, then that’s unnecessary suffering. And that’s probably the lesson there is not to give up just because somebody with a white coat said, that’s something. Yeah.
Molly Hopkins 55:46
Well, no one should ever, ever, ever in the medical profession, say there’s nothing more like there’s always another option.
Bill Gasiamis 55:54
Yeah. Well, I appreciate you guys getting on to have a chat with me. Thank you so much for doing that. My pleasure. It’s a great story of hope and possibility. And Molly, your organization, if people wanted to reach out to you, the general public in your area, are they just are they able to do that?
Molly Hopkins 56:18
I’m kind of a hidden gem. I only work with college athletes. Ann, we put her on the roster.
Ann Sertel 56:37
I get to travel with the team.
Molly Hopkins 56:38
Yeah, she’s on the team roster.
Bill Gasiamis 56:42
She put the work in 30 years ago. So you know, this is the playoffs.
Molly Hopkins 56:48
Yeah, she’s now on the teams here. Anybody can always give me an email. I don’t mind.
Bill Gasiamis 56:54
Yeah. And I suppose what I’m saying is, if there’s a way that we can connect people, perhaps there might be some people interested, who get triggered to say, Hey, maybe I can improve more? Who would you suggest I see? Or how would you suggest I go about this, maybe you can just say, find a sports therapist that specializes in this particular thing in your area, and there will be a ton of your kind of colleagues around the place.
Bill Gasiamis 57:23
And maybe we’ll be able to encourage people to go ahead and do that. Ann if anyone wanted to reach out to you, would you be happy to chat to anybody via email and just encourage them and give them a little bit of hope?
Ann Sertel 57:37
Sure. Because I think everybody needs it.
Bill Gasiamis 57:43
Yeah. Well, you are amazing thank you so much. Give our love to Nick because he’s dealing with a lot too and he’s probably underqualified as well. But seems like he’s done a decent job so far. Come in coming the coming to the screen.
Nick Sertel 58:09
It was one thing I’d like to add when I was getting out of the hospital. There was more than one medical professional who told me and Ann in six months it was as good as you’re ever going to get. But I didn’t believe that.
Nick Sertel 58:32
And after six months, she was not near where she is today. Thanks, Molly, and thanks, everybody. It’s been a team effort. And she’s coming along. I don’t see that anything is going to stop Ann. If she wants to.
Bill Gasiamis 58:56
I just can’t believe that in 2024. Or whatever year it was that that happened in the 2020s. A doctor still has I don’t know that they’re driven to say that junk. I cannot believe that.
Ann Sertel 59:13
I remember that.
Nick Sertel 59:14
There’s more than one too.
Ann Sertel 59:16
Yeah, six months, whatever she’s doing in six months is what it’s going to be.
Bill Gasiamis 59:21
Wow. Well, thank you so much, everybody, for joining me. I appreciate it.
Ann Sertel 59:28
Thank you. And Bill, how do you pronounce your last name?
Bill Gasiamis 59:32
My last name is Gasiamis.
Ann Sertel 59:35
Gasiamis okay.
Bill Gasiamis 59:36
That’s it. Nailed it. Well, I appreciate you guys. Thank you so much. I’ll put it out there and make everybody aware of it. And then also, was it Beth that contacted me, was it? Say hi to Beth and thank you to Beth and I’ll make sure she gets to have Listen.
Bill Gasiamis 1:00:01
Well, thanks for joining us on today’s episode to get a copy of the book, The Unexpected Way That Stroke Became The Best Thing That Happened, go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:00:22
Thank you to all those people who have already left a review about the podcast. It means the world to me podcasts live and thrive because of reviews. When you leave a review, you’re helping other people find this content much easier. And that is helping them make their stroke recovery just that little bit better.
Bill Gasiamis 1:00:42
I receive feedback every week from somebody who has appreciated an episode of the podcast and that has helped them in their recovery, feel less alone will get some new bits of information that they’ve been able to act on. So if you haven’t left a review, and you would like to the best way to do that is go to iTunes and Spotify and leave a five-star review and a little bit about what the show means to you.
Bill Gasiamis 1:01:08
If you’re watching on YouTube, I love it when people comment below the video. I love to interact with people who leave comments, I try to respond to all the comments. I’m doing a really good job at that at the moment. And if you like this episode, and want notifications of future episodes, subscribe to the show and hit that notification spell.
Bill Gasiamis 1:01:31
If you’re a stroke survivor with a story to share, come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor. If you are a researcher who wants to share the findings of a recent study, or you’re looking to recruit people into studies, you may also wish to reach out and be a guest on my show.
Bill Gasiamis 1:01:51
If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover. There is also a path for you to join me on a sponsored episode of the show. Go to recoveryafterstroke.com/contact Fill out the form explaining which category you belong to.
Bill Gasiamis 1:02:07
And I will respond with more details about how we can meet via Zoom. Thank you so much once again for continuing to listen for responding for giving me feedback for letting me know what the podcast means to you. I appreciate you see you on the next episode.
Intro 1:02:30
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 or the individual’s own experience. Wedo does not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:02:47
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:03:09
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content.
Intro 1:03:31
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Intro 1:03:51
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The post A Case For More Physical Therapy After Stroke – Ann Sertel and Molly Hopkins appeared first on Recovery After Stroke.
1 hr 5 min
February 15, 2024 Stroke Recovery interview with Bill Gasiamis
Bill Gasiamis was recently interviewed by Gaymarie Mino who has recently begun telling stroke recovery stories on her YouTube channel.
Guide to Surviving Stroke and Brain Injury
Highlights:
00:00 Introduction
01:56 Bill’s deficits after the strokes
07:56 Navigating depth perception issues
09:19 The gut-brain
19:16 Decreasing brain inflammation
29:14 Is this normal?
34:31 There’s always hope
42:02 How to deal with stroke survivors
49:50 Encouraging stroke recovery
55:01 Mental therapy for stroke survivors
1:01:46 Dealing with the past
1:11:06 Overcoming stroke challenges and personal growth
1:22:34 How stroke led to finding purpose
1:29:35 Bill’s future goals
Transcript:
Introduction – Stroke Recovery with Bill Gasiamis

Gaymarie Mino 0:00
Welcome back to a guide to surviving a stroke and brain injury. Today we have the pleasure of having Bill Gasiamis with us. Before I get started, I would like to thank you again, Bill and I had an earlier date about three weeks ago to do this, and I had technology problems.
Gaymarie Mino 0:24
So he was gracious enough to reschedule with me and today is our second attempt. Now, there are no guarantees, but here we go. So little info on Bill. He became a stroke survivor in 2012, at the age of 37, right? And he has three brain bleeds. I know it’s hard to believe, but three brain breeds in three years, right?
Gaymarie Mino 0:52
In November of 2014, Bill underwent surgery on his brain. He had to learn how to walk again, and we’ll get into that later, but he likes to share his incredible story of recovering as a stroke ambassador with others to raise awareness and help similar stroke survivors and their families.
Gaymarie Mino 0:52
He didn’t feel he was getting adequate aid in his recovery. So he started recoveryafterstroke.com. He has a YouTube channel of the same name. He’s an author and a podcast host on recovery after a stroke. And I think I saw you do some motivational speaking as well.
Bill Gasiamis 1:39
Yeah, I do from time to time I do some public speaking.
Gaymarie Mino 1:42
So my first question is, what were all your deficits after the strokes?
Bill’s deficits after the strokes
Bill Gasiamis 1:56
The first time that I knew there was something wrong, was numbness on the left side, my entire left side was numb by the time I got to the hospital. The second time after the second bleed, which was six weeks after the first bleed, there were memory problems, the inability to make a sentence to finish a sentence, and I would lose track of where I was in a particular conversation.
Bill Gasiamis 2:26
I couldn’t remember my wife at one moment when I was in hospital. And I couldn’t work, I couldn’t do any of those types of things, couldn’t drive, I always felt like I was a bit spaced out in kind of this different dimension, really strange sensation where I was not in or out of my body.
Bill Gasiamis 2:52
And all those things kind of went away, they dissipated after time. But then after brain surgery, I was left with permanent left-side deficits, weakness, numbness, altered sensation on my skin, colder on my left side, and my balances a little bit out. And if I get fatigued, my left side gets fatigued way quicker than my right side.
Bill Gasiamis 3:20
And the best way to describe it is if you know what it’s like to be drunk after a few drinks on my left side. My left side is like that. It’s kind of like always two or three drinks in and my right side hasn’t even started.
Gaymarie Mino 3:39
Luckily for you, though, you don’t sound drunk and look drunk at the same time, like I do. So you lost the ability to walk? How is it? Did your body remember how to walk again?
Bill Gasiamis 4:00
So what it was, I have proprioception issues. So the way that it was explained to me is that my body doesn’t know where it exists in the world. So it doesn’t know where in the world it is. And it doesn’t get feedback from my environment correctly, on my left side to tell the brain what to do.
Bill Gasiamis 4:21
So because of the numbness, I can’t feel my foot on the ground correctly. So it’s not given the right feedback correctly. Compared to the right side, and what happens is, that my muscles overcompensate. They try to make certain that I stay upright, and they tense up.
Bill Gasiamis 4:40
And then all of a sudden, every once in a while, they might just let go because they kind of forget to hold me up, you know. So what was happening was I couldn’t walk because my leg didn’t know that it was on the ground and my brain wasn’t getting the feedback that it was on the ground.
Bill Gasiamis 5:02
So if I put pressure on me, on my left leg, my knee would buckle and collapse, and then I would fall over. And with my left hand, it was a similar issue, but more on the coordination side. And with the coordination, I couldn’t bring my left arm, to my nose, for example, or to my mouth or my head.
Bill Gasiamis 5:25
And I couldn’t pick things up and what was happening was, it had altered sensation. So when something is hot, it takes a little longer for it to register that it’s hot. And I need to be careful with that. Also, because of the muscle kind of tenseness or spasticity, it’s very difficult to hold something like a cup of coffee on my left-hand side, the hand can’t stabilize itself.
Gaymarie Mino 5:55
So did you have tremors or just a stability issue?
Bill Gasiamis 6:02
I don’t have anything that you can see. It’s a stability issue. It’s kind of the way the muscle works, rather than the ability of the arm to do things. So that arm can do things, but it’s not supported by the muscles in the correct way.
Gaymarie Mino 6:22
Your brain is saying do this, and it’s not registering?
Bill Gasiamis 6:27
Yeah, the arm is doing it. But it’s not doing it the way it used to. It’s not doing the way the right side used to do it. The same with the leg. So now, for example, because of the feedback that I get on my leg, and the numbness that I have running is not possible.
Bill Gasiamis 6:41
In a long, kind of sustained way on a football field, for example, because of the levels of the ground and the uncertainty of the pitch. But I might not have enough information as to how to bend the knee and then I could end up falling over or buckle the knee or do something strange because it’s not registering correctly the information that it needs to tell my brain as to how to adjust.
Gaymarie Mino 7:12
Is it a depth perception thing as well?
Bill Gasiamis 7:18
No, it’s just a feedback loop. It’s like, somebody put a filter on the feedback and the feedback is coming through. But it’s not saying this is a hard surface, it’s just saying this is a surface.
Gaymarie Mino 7:37
You don’t know how to adapt to that.
Bill Gasiamis 7:39
Yeah and when you go to a soft surface like grass. It’s just saying this is a surface. So it’s not allowing me to respond to the difference in the surface as they’ve changed from concrete to grass.
Navigating depth perception issues
Gaymarie Mino 7:57
Well, I still can’t run. Not that I ran a lot before, but I can at least run to the bathroom. But I also have problems with depth perception. So stepping off a curb, I have no idea if it’s four inches or six inches. If it’s a ramp, I have no idea. But incline, you know what I mean? So that’s why people don’t think about that stuff.
Bill Gasiamis 8:26
Is the depth perception related to the eyes?
Gaymarie Mino 8:31
Yes, partly, and partly my balance. So I have vertigo all the time. I look drunk when I walk. But though it’s like when I’m walking, when I first have the strokes, I had a problem with surfaces, like my driveway changing into asphalt and asphalt changing into dirt and dirt into concrete.
Gaymarie Mino 8:59
I could not register it in my mind what to do. So I would just freeze and stand like a dummy because I did not know what to do even tile I had no idea what that was like, if it was slick I needed to be careful.
Stroke recovery and the gut-brain
Gaymarie Mino 9:19
I mean, it was just I still have challenges with that. But I’m getting better because you have to do it. To get used to it. It’s like riding a bike. You have to keep getting back on and back on and back on. But yeah, it’s a lot. So I also saw on your podcast, YouTube is where I watched you that you feel that your gut was impacted by the stroke, right? How do you believe your gut is related to the stroke?
Bill Gasiamis 9:52
Well, there’s a bit of research being done and don’t quote me on which research it is or what it’s called, but I read this several times through the last sort of 10 or 12 years, there’s a bit of research being done is like, with strokes, are they beginning in the head? Or are they beginning somewhere else?
Bill Gasiamis 10:13
So it’s possible, the research sort of suggests that the stroke in the head may be a symptom. It’s not like where the stroke occurred. And it’s also the cause and the symptom, and everything that’s not happening there, there’s a possibility that maybe some strokes, it could be a symptom, and the actual issue that you need to resolve is elsewhere.
Bill Gasiamis 10:42
And usually, what they’re saying is where it needs to be resolved is the gut. Now, there is a massive amount of work being done on the gut as the second brain, so they talk about the gut as the second brain. And what they’ve discovered is that the gut has neurons in it, like the brain has neurons.
Bill Gasiamis 11:03
It has about the same amount of neurons as a cat’s brain, which suggests intelligence. And they know for a fact that the gut and the head are in communication with each other through the vagus nerve. So there is a conversation happening up and down from the head to the gut, and from the gut to the head, constantly in this loop, where they communicate with each other.
Bill Gasiamis 11:34
And that’s how we go into this process of knowing when to eat. Because we do get a gut feeling, the gut is saying, Oh, I’m hungry, but the head is what knows, knows what to do about it. It’s the head that makes us decide as to when to start cooking, what we’re going to cook, or what we’re going to do.
Bill Gasiamis 11:58
So there’s a whole thing that happens. And what I found, which was common with other stroke survivors, was that as soon as I had my head issue, my gut went offline. So it became less able to, to pass to go to the toilet. And it became sluggish.
Bill Gasiamis 12:19
And it became kind of unsettled. And it felt a bit weird. I thought it was just a coincidence, and I thought it was just me, but when I asked the question of people who follow my Instagram or my podcast, several people related to that experience and said a similar thing.
Bill Gasiamis 12:39
So with the gut is intelligence because there is a book by Michael Gerber Gershon called The Second Brain and then there are tons of other books that relate to that. The gut is where neurotransmitters are made. It’s where serotonin is made. It’s used by the brain, but it’s created in the gut.
Bill Gasiamis 12:39
And then, if you have a gut that’s not working optimally, and your brain is requiring serotonin, it’s very difficult for the brain to access that serotonin if the gut is not working properly, and it’s not able to make the neurotransmitters that the brain needs.
Bill Gasiamis 13:34
So the lack of neurotransmitters in conditions that are lacking serotonin, in neurological conditions that are lacking serotonin, you have to resolve the issue in the gut so that there is more availability of serotonin so that the brain can use it and do what it needs to do with it.
Bill Gasiamis 13:57
Now, that’s just one of the things that is created in the gut that the brain benefits from. Also, you want to make sure that when you’re eating food, the food is not only supporting your gut but is easy to digest, so that you require less energy to digest, and therefore you have more energy for brain power.
Bill Gasiamis 14:22
You also need good quality food, for example, so that the gut is healed, so that it’s doing all the things that it needs to do easily and effortlessly and creating all the neurotransmitters so that your brain can uptake it. But also so that you can have more energy from the perspective of having a meal before and you’ve said to your family or whoever after like Thanksgiving or Christmas or another celebration.
Bill Gasiamis 14:52
And you go oh man, I think I’m gonna go have a sleep because I’m in a food coma. Okay, so that food coma is a thing that is caused by eating too much food or the wrong food. And when you have a neurological condition, and you’re already susceptible to fatigue, because your brain is doing more work to just stay up to date, then food comas and all that kind of stuff are more dramatic.
Bill Gasiamis 15:20
And I found that they were dramatic for me. And I was crashing heavily compared to any other time in my life.
Gaymarie Mino 15:28
Was this before the stroke or after?
Bill Gasiamis 15:30
After. So I’d have a normal food coma if I ever ate the wrong foods at a party or whatever. But then, but then doing having the same nutritional habits after the stroke just used to put me out of action for hours even a day. And I realized that I could improve the way that my brain worked by changing the food that I was eating, and not eating, for example.
Bill Gasiamis 15:56
Not drinking sodas, and not eating high-carb foods like pasta and bread. And because being from a Greek background, all our food comes on bread, you know, you have to put everything on bread. Sometimes you eat pasta, and you have a red sauce, a beautiful red sauce, and you put the pasta with the red sauce on bread.
Gaymarie Mino 16:21
It’s not that different from America.
Bill Gasiamis 16:28
So those things used to be okay, but they’re not okay for me now I can’t cope. And there’s a really big conversation as to why pasta, carbohydrates, potatoes, and white rice, should be avoided after somebody has a stroke.
Gaymarie Mino 16:48
Now, how did you find out the correlation though? That’s not something that came first to my mind did somebody suggest it?
Bill Gasiamis 16:57
So for me, it was just I felt really bad for a long time after the first couple of bleeds. I didn’t know, Can I do anything to make myself feel better, and nobody was able to tell me what to do. Especially back in 2012, there was no inflammation. And I was on this medication called dexamethasone, which was to reduce inflammation in the brain to steroids.
Bill Gasiamis 17:04
And it’s given to neurological patients a lot. And this dexamethasone was a terrible steroid, it saved my brain. But it created these ridiculous side effects. I couldn’t sleep, I was hallucinating at one stage, and I felt like ants were crawling over my skin.
Gaymarie Mino 17:46
Oh, that’s horrible. Oh my god.
Bill Gasiamis 17:52
It was making me hungry. So it was dropping my blood sugar, and then I had to keep eating. I was eating about 4000 calories a day, which was double my intake because I wasn’t sleeping, I was eating a three or four o’clock in the morning like massive bowls of pasta. This is happening for two or three weeks.
Bill Gasiamis 18:12
And in that two or three weeks, I put on eight kilos, which is about, I don’t know, 16 pounds or 18 pounds or something like that something ridiculous. And then I thought I better read the side effects of this medication and I read them and they were just out of this world, there were about 60 of them and I was experiencing 20 of them.
Bill Gasiamis 18:46
And I just remembered somewhere where I heard the reason for this medication is to decrease the inflammation in your brain. And I thought okay, how can I decrease inflammation in my brain without this medication? Because, if I stay on this for too long, it’s gonna be really bad.
Gaymarie Mino 19:05
Was this before the brain surgery or after?
Bill Gasiamis 19:05
Yeah, before this is the first six weeks.
Gaymarie Mino 19:13
Before your first one, right? Your very first stroke?
Decreasing brain inflammation
Bill Gasiamis 19:17
After the first one and before the second one. So I’m googling and I found something came up about decreasing inflammation in the brain. And it was a book by Dr. David Perlmutter. And the book was called Grain Brain. I just bought it I had no idea what it was going to teach me but the book Grain Brain was basically what then opened the can of worms and the rabbit holes that I went down that were related to recovering your brain after a neurological issue.
Bill Gasiamis 19:55
Now David Perlmutter is a neurologist and he dealt with a lot Have people who have experienced dementia, Parkinson’s, Alzheimer’s, those types of types of conditions. While all his patients were coming to him with issues, neurological related, he wasn’t able to support them in any way medication was always going to just keep people alive longer and decreased as long as possible, and he didn’t like it as an outcome.
Bill Gasiamis 20:29
So they did a lot of research. AnTheyound the Atkins diet supported people back in the ’60s and I think in the ’70s. And the Atkins diet was one of the first keto diets, but missed both Dr. Atkins, who wrote the book couldn’t do is he couldn’t prove the way that we can prove now, the long-term beneficial effects of a keto diet. He had what we’ll call anecdotal evidence.
Bill Gasiamis 21:00
Evidence suggested that this is helping people because he would have a sick person who would put them on the Atkins diet or the keto diet that would get better, that would report all these amazing things that would lose weight, the brain would come alive, they didn’t know why, exactly, they didn’t know the mechanism that was working. So his research was poo-pooed a lot by the other side of medicine.
Bill Gasiamis 21:29
And as a result of that, it didn’t take hold. And it was just considered a fad diet to lose weight in the 80s. And the 90s is kind of how I heard of it. But then, the more research these guys did, Dr. David Perlmutter and his team, discovered that they were getting long-term benefits for his Alzheimer patients, his dementia patients, and they were able to, with met medication, improve the outcomes of a lot of these people, and give them a better long term diagnosis, I suppose.
Bill Gasiamis 22:06
And that was it for me, it was like, okay, I’m gonna do exactly what his book says. So his book said, basically stop eating bread, white potatoes, pasta, and sugar. And I just did exactly what he said. And then I started to notice the benefits to my health, I lost weight, my brain switched on. Now, when I say switched on, it just didn’t feel as fatigued as it did previously, even though I had a blood clot in my head, I had neurological symptoms, and I still hadn’t had the surgery.
Bill Gasiamis 22:43
So, you know, we didn’t know exactly what was going to happen in the future. I thought if I could support my brain and reduce inflammation in my brain, which is how Dr. Perlmutter Express, describes that as well. Well, then that could be a good thing going forward without medication, right? And that was the entire reason that this whole thing started.
Bill Gasiamis 23:08
And then what would happen, actually, every once in a while is I would have a sweet biscuit. And I’d feel the buzz in my head. Instantaneously, I could feel the sugar running through my veins into my, into my body. And then it was weird. And I thought, this is strange maybe it’s nothing.
Bill Gasiamis 23:30
And then it would happen again, say a month later or two months later. And it would be like, Wow, oh my god, I’m feeling like I’ve just taken some drugs or something, you know, like that. And then, I was just like, Okay, I know, this stuff affects me in a certain way. And maybe it did before the brain injury.
Gaymarie Mino 23:49
You didn’t notice it.
Bill Gasiamis 23:51
I didn’t notice it. But now with a brain injury, I can’t afford to be out of action because of brain fog for months, weeks days, or whatever. So I did the best I could. Yeah.
Gaymarie Mino 24:05
Now, is that just for brain bleeds or is it also for blood cop? Also
Bill Gasiamis 24:10
for people who have had an injury, from concussion from blood clots, strokes, bleeds, or any type of neurological injury?
Gaymarie Mino 24:23
That’s amazing. Honestly. What do you say you are spacey and foggy and all that wasn’t like a cognitive thing. Or was it just like, could you think in your head but not say?
Bill Gasiamis 24:38
Yeah,
Gaymarie Mino 24:40
what I’m trying to say. For example, I knew this was a can. Okay. In my head. It was an I knew it was the Mountain Dew can but when I spoke, it came up chicken. And I know that’s crazy, but people are like what are you talking about? I’m like, you know, chicken Do I need a chicken? I want a chicken. So they bring me a piece of chicken over like, what are you guys? Why did you bring it? But I had no idea that I was saying that. Does that make sense?
Bill Gasiamis 25:14
Yeah, no, that wasn’t me. So it was just spacey like, like I would get distracted and couldn’t complete a sentence or I had an idea to start a conversation, I would start the conversation for session, and then the idea would go away. Or my wife would ask me a question. And I’d begin to answer the question, and then I’d forget what the question was. So it was in mid-sentence, I
Gaymarie Mino 25:46
did the same thing. Yeah, like what? I was more like, um, so you’re talking to me? And I go, Oh, yeah. Oh, squirrel. He’s not what I mean, I’ll be like, had no attention whatsoever. It was like, easily distracted. And I can be asked to be so frustrating for like your wife, your kids, people that talk to us? Because we don’t know we’re doing it. But then they’re like, well, they just don’t care. They’re not paying attention. It’s like, No, I swear, I want to I am interested in just, I can’t do
Bill Gasiamis 26:27
it. Yeah, there’s a bit of that. There was a bit of that. But it’s, it kind of got better. As years after the stroke, things took time. You know, things kind of improved. And sometimes, if I’m having a bad day, if I’ve had a tiring day up, I haven’t slept well, the night before. Yeah, then I do get a little bit flaky still.
Gaymarie Mino 26:53
I feel bad for your wife. And I don’t mean to disparage you. But I mean, I just think we don’t give enough credit to the caregivers because they have no idea what’s going on. None. Is it real? Are they faking it? are they picking the Vantage? Are they worse off than I think they are? I mean, it has to be very troubling for them to get it. Yeah,
Bill Gasiamis 27:19
I think those are some of our hardest times trying to work out. Is this normal? Is this a stroke symptom? Is that normal? Is that you know, what’s going on? And we had a lot of questions that weren’t answered. So there was a lot of googling. There were a lot of meetings with doctors. There were a lot of visits to the hospital that were unexpected.
Bill Gasiamis 27:43
Because I would I would feel strange, neurological symptoms, and my wife has got no idea. She’s not a doctor. She’s not a knight. She’s a regular person. And then she doesn’t have a rulebook nobody gave her. These are the 20 things you need to know about stray. She just went home. And so she was told, here, take your husband and seek him out.
Bill Gasiamis 28:07
She didn’t know anything. Right. So we, we did a lot of stuff at let’s go to the hospital again. What’s this? Okay, how can we help you while you’re here for well, my husband’s had, you know, some brain bleeds. He’s feeling a bit weird. All the blah, please do a scan. Just make sure it’s not bleeding because he hasn’t had a result. Right? etc. So, okay, well, all right.
Bill Gasiamis 28:38
Well, no worries. 3, 4, 5, 6 weeks later, we’d be back that Ah, you’re in six weeks ago. I was. Yep. Do you think you’re having another bleed? I don’t know. Probably not. But why risk I’ve already had to? Okay, I know. We’re all right, we’ll give you another scan, another scan, you know. So, the only way that we could feel comfortable and at ease was to get things done continuously. And be proactive instead of dying wondering.
Is this normal?
Gaymarie Mino 29:13
Right? Well, the thing is, I don’t know if you felt this way. But when I went, I didn’t have a neurologist, they didn’t know I had two strokes. And they didn’t assign me a neurologist. So I finally went and got one after three years. But before then I had no idea. Is this normal? Am I supposed to feel this way? Nothing. And they make me feel crazy. Oh, you know, ya know, you’re having a stroke quit being a drama queen.
Gaymarie Mino 29:48
Just go home, that’s what got me into researching and the YouTube channel and all that because there are so many things that aren’t told to us, you know we need to know if this is normal. One of the great things I like about having my YouTube channel as well, as you to all these stroke survivors is, that every stroke is different. But we all have some commonality. Somebody has emotional problems, and somebody has, you know, and we can all relate. And that made me feel less crazy than I already am. But I agree. So is that what happened to you did you finally just reach out to other stroke survivors?
Bill Gasiamis 30:38
I did that locally in my community. And at the Stroke Foundation here in Australia, I met a lot of stroke survivors, because I volunteered there for a little while. And it was a relief to hear their stories. They’re going through something similar or, yeah, that this, this is what it meant for me or, and it was like, Okay, I get this now, like, I’m all good, I understand that little thing.
Bill Gasiamis 31:05
But then there are a million other things I need to understand. And so part of my curiosity, when I get curious about something, I never stop trying to learn about it. And of course, I had a very big motivation as to why I needed to learn about this stuff. I needed to get my head around it And I also needed, to constantly talk about it. So my wife doesn’t need to hear about it from me every single day.
Bill Gasiamis 31:35
So to avoid doing that to her, a friend of mine, for a joke said to me, so what do you want to do with this thing that you’re learning about stroke and healing the brain and all that? What are you going to do about that with that information? So I’d like to share it with people and tell them about it. He goes, Okay, where do you want to do that? So I’d like to do that.
Bill Gasiamis 31:59
You know, in my neighborhood in Preston and his own how many stroke survivors do you think you’ll find there? I said I don’t know. 514, or no, no idea. All right. Because do you know there’s this thing called the internet? Yeah, like? Yeah, it goes in all around the world, you know? We go Yeah, he goes, What did you just do something like that? If I try and share it, online, Facebook, Instagram, all that kind of stuff. And then to me, that was like, okay, so I wonder if I could find stroke survivors on Instagram?
Bill Gasiamis 32:38
And of course, I did. And then I reached out to them, and I said, Hey, do you want to have a chat? Because I’d love to know about your story so I can understand and learn from it. They said yes. And then since we were chatting, I said, Can we record it? And then they said, Yes. And I said, I’m gonna put it on the podcast, or YouTube, and that, and that’s how it started.
Bill Gasiamis 33:01
And that was my therapy. That was me talking about it more often than I was able to. And that was me connecting with another stroke survivor, and that was feeling better. And that was them feeling better. And then we put it out there. And people started telling me that they loved the interview. And that’s it. I was hooked after that.
Gaymarie Mino 33:22
It is it’s like a drug. Because I think for me, just feeling not alone. Because, you know, some of my family members left, most of my friends left. I was all by myself and then dealing with these stroke symptoms. And I couldn’t talk I couldn’t walk. I mean, I was having all these things. And so for a while, I struggled because I was like, well, nobody can understand me. Nobody can, you know, watch me walk up as embarrassed.
Gaymarie Mino 33:58
And I think you had a young man on your channel. He had aphasia bad. He was like, 17 or something. Do you remember him? Jack? So that was me. That’s how I couldn’t talk. And so I thought, you know, if somebody saw me then and somebody sees me now, that gives people hope, because I have a lot of doctors tell me well, you are what your six months so welcome to your life.
There’s always hope in stroke recovery
Gaymarie Mino 34:31
Adjust to your new life. And I’m like, excuse my French. But FU I’m not gonna I’m not gonna take this. I’m going to show you all wrong. And watch me and so I started recording it for me. And for other people, not to pat myself on the back but so many to inspire somebody else could give hope. Because there is hope for everybody.
Bill Gasiamis 34:55
Pat yourself on the back. Yeah, who cares? Let’s do it. Nobody else is doing it. We know what I mean. Yeah, but
Gaymarie Mino 35:04
I mean, I still have a long way to go. But I’m much better than what they thought.
Bill Gasiamis 35:09
Yeah, you celebrate the wins though. That’s the thing. There’s a lot of shit that we have to put up with. So whatever the winds are, we may as I’ll celebrate those, and the thing about what I loved about Jack was, that he was all the way I told you back when December 28, 2020, when I interviewed Jack, and episode 127. Right. So, I’m at episode nearly 300 now. So Jack contacted me, he is not embarrassed, he’s not worried, he’s not afraid, isn’t whatever.
Bill Gasiamis 35:49
He wanted to be on the podcast. He was so unwell. But he still wanted to be on the podcast, he can’t hardly talk. And, you know, originally, when I was doing the podcast, I thought, I will reach out to people, and people with Aphasia would say, No, I don’t want to be on the podcast. And it’s like, Oh, okay. I didn’t know exactly what aphasia was like. So I had an idea that they should be on the podcast, like, why wouldn’t they?
Bill Gasiamis 36:24
I found that strange. When I met more people with aphasia. I understood what the difficulty was. If they thought that what I was looking for was somebody perfect to talk to. And I’m not into that I don’t have a perfect podcast show where it’s produced. I have conversations with people. I don’t care whether they can talk. I don’t care how long it takes.
Bill Gasiamis 36:50
But I want to show stroke in all of its versions, not just my version because my version is not like everyone else’s version. So Jack reached out to me. He came on, after three years after he had a stroke. And then his mum contacted me a little while later and said, thank you so much for having him on the podcast. It meant a lot to him. And it boosted his confidence. It may have taken his ability to step out in public and to speak with aphasia, maybe took it to the next level.
Bill Gasiamis 37:30
And I thought, well, there you go. That’s exactly what the podcast is about. And then since then, I’ve had lots of people with aphasia join me on the podcast. And there are different stages. And one gentleman, Duncan Campling. He doesn’t specifically have aphasia, but because he was because he had a brainstem stroke. And he was locked in. He had a tracheostomy for a very long time. And his voice is very shallow, it’s not very strong. And he may also have I think it’s dysphasia muscle issues in his throat. And he spoke with a computer.
Gaymarie Mino 38:17
Like Stephen Hawking.
Bill Gasiamis 38:18
Yeah, kind of like that. Like we planned it. I sent him the questions. And he answered the questions. And then when I asked him the question on the podcast, he pressed play, and he’d answer my question.
Gaymarie Mino 38:31
That is amazing.
Bill Gasiamis 38:34
How cool is that? I think he had an iPad program or something like that. And so how cool is that? So he can have the conversation. He can attend the podcast, he can be part of the community. It’s slower, it takes longer, but it’s still as effective. And yeah, how good is that? That you can give a voice to somebody like that Jack, and Duncan, they wouldn’t have had a voice if it wasn’t for technology, you know, this thing that we are doing.
Gaymarie Mino 39:14
I was so proud. And like, I was proud of him, which is kind of like I don’t even know him. But I was so proud that he was so brave. And I can understand them. Because I remember talking like that. There were certain times I couldn’t understand him. But I mean, he was so good. And what he proved was he still here? He is still up here. And he knew what he was trying to convey it was just this stupid thing that he couldn’t convey.
Gaymarie Mino 39:48
And I was so proud and you to the patients. I mean, that’s why a lot of people what I have aphasia worse, people would try to interrupt me and finish my sense Just because they got tired of waiting, well, that doesn’t help me. I need to work it out I need because my tongue half of was paralyzed half of my esophagus were paralyzed. You can still see my face right here flying. And I mean, it took me I had to practice. And what better way for you to shut the hell up and let me talk? But I got a dog.
Bill Gasiamis 40:27
Yeah, the thing about people like me, people like I was before the stroke is, that you’ve got no idea how to behave around the stroke survivors, you behave like an idiot because you don’t know what to do or say. And it’s normal. But it’s so challenging to be a stroke survivor and have somebody while you’re just about to forget your sentence, like hurry up, get it out.
Gaymarie Mino 41:02
Exactly. Oh, you’re trying to say this? No, no, I wasn’t. But thank you. Now I forgot what I was going to say. And that happened to me so many times. It was so frustrating. And the other thing too. So what do you want to tell people what not to say to a stroke survivor? Or not to act like that? Ever thought about that?
Bill Gasiamis 41:26
I have it, you know, to be good. If you somebody who’s listening to this, and you’re somebody who hasn’t had a stroke, thankfully, and you know, somebody who has had a stroke, and you don’t know what to do or say don’t do or say anything. Just be there. To say hello, I love you. You’re my friend. What can I do for you? Just shut the fuck up.
How to deal with stroke survivors
Gaymarie Mino 41:53
I did a whole session on that on my channel. Because not to berate people. But it was like, I’m not deaf. So you don’t have to raise your voice to me because I can hear you fine. Just because I can’t talk doesn’t mean I can’t hear. And the other thing, the most condescending thing you could have done to me I had nurses do this to me all the time was talk to me like I’m a baby. Oh, do you want it? Okay, well, let me get that for you, dear. Oh, you’re such a good girl for doing that. Good job. I mean, I was 46 I’m not a kid. Are you kidding me?
Bill Gasiamis 42:39
They don’t know because they know that they’ve never been in this situation. So you gotta give him a little bit of slack. But at the same time, it’s okay for us to say you’re being an idiot. And I remember one of the best interviews that I had was with a lady Clodah Dunlop. And Clodah had locked-in syndrome as well. She had not been able to speak for many months because she also had trouble with her throat tracheostomy and all that kind of stuff.
Bill Gasiamis 43:18
Clodah I interviewed back in episode 38. And she’s coming out of the stroke situation and couldn’t move a single part of her body, not her arms, not her legs, nothing, just her eyes. And immediately with her partner. I think it was her partner or husband. They set up a system a system to communicate. One, blink was Yes, two No. And three was You’re a moron. So they set the system up between themselves. The doctor would come in, the doctor would come in and say something stupid. And Clodah would blink three times.
Gaymarie Mino 44:16
Oh my gosh, that’s funny.
Bill Gasiamis 44:18
And between the two of them. The doctor didn’t know. But between the two of them, they knew that Clodah had just called the doctor a moron. So even in her hardest times, she also felt the difficulty of the inability of the doctors and the nurses to comprehend her state that she was completely all there. No issues. She felt cold, heat, itchy, all that kind of stuff, but she just couldn’t tell anyone. I’m feeling itchy on my foot. Or I’m feeling cold. put a blanket on me or if I’m feeling hot, take the blanket off. And she just had to deal with it.
Gaymarie Mino 45:07
Is she better now?
Bill Gasiamis 45:09
She’s better now, she was a police officer in Ireland, and she’s gone back to work. She is a detective now.
Gaymarie Mino 45:17
She’s gone back to work. That’s amazing.
Bill Gasiamis 45:22
Yeah, she has to lift deficits on one side. She has spasticity. She has a foot drop. But you know, it took her a long time. But I interviewed her man I interviewed her in 2019. And her stroke was in 2015. So she went back to work. Maybe it took, you know, seven or eight years or something like that. But she’s back to work as a police officer.
Gaymarie Mino 45:48
Because my uncle Phil had a stroke I don’t even know I was liberal. And he had locked-in syndrome. And my aunt, I love her job. Let me say that I love her to death. I loved her. But she had them in the living room. And so there’s like 20, left kids are all cousins running around, you know, the envelope balls and he would just sit there and he would communicate the same way he would blink once for yes and twice or no. But he would cry. And that would kill me.
Gaymarie Mino 46:26
Because I knew he was in there. But he couldn’t interact at all. And he could see everybody running around having a good time. And he lasted seven years like that before he finally pulled the plug on him. Because that has to be your hell. on personal hell yeah.
Gaymarie Mino 46:48
So when I had my stroke, that was my biggest fear. Because I remembered him. And I was like, Oh, my God and I could hear myself talk. But it was in my head not out. And so I was like, Oh, I got Uncle Phil, I’m like Uncle Phil, this horrible, I’m gonna die. I mean, there were so many things. So I admire that, she’s better because that’s amazing.
Bill Gasiamis 47:15
And now, you know, a lot of luck goes her way. She’s gonna go through a heap of terrible things. And she’s gonna struggle for a long, long time. But a lot of things go her way. And one of the things that goes her way is that her recovery continues and continues and continues. And she pushes us up, and she goes after it. And she’s got the right mindset.
Bill Gasiamis 47:37
And she’s got, say, the right partner, or whomever. And then from all the challenges that she’s faced, she’s focusing on the results. And she writes a book about it, and she does all this stuff. Not everyone can do that. So I think it’s our responsibility. If we have the smallest glimmer of hope, you know, for 1% recovery, it’s the bloody go after it and I think we have to do for people like your Uncle Phil because that’s what they would want to have the opportunity. And if they can’t get it, well, then that’s luck is their luck. And then they have to just deal with it. You know, what can you do? You can’t do anything about it.
Gaymarie Mino 48:28
Times were different back then. I mean, there have been so many advances and so much information now. Back then it was like probably a death sentence. Yeah, that’s all you can do. He’s always gonna be this way. Like the doctors. I mean, not one doctor I was over here. I was in a wheelchair, I was paralyzed on my right side. And they said, well, are going to be at six months is how you’re going to be for the rest of your life. And I would have listened to that, like a lot of people do, then I would have never tried.
Gaymarie Mino 49:06
I mean, I broke so many plates. But I have it in my hand. No, I’m gonna be able to do this one day and if other people are encouraged by that try it I mean, I think it’s just the same as the the negative connotations that doctors and not all doctors. Because if you watch my channel, I have a whole bunch of inspirational speech therapists then and other people on my channel. But you have to search them out. You can’t expect them to come to you.
Bill Gasiamis 49:42
Just the moron doctors.
Gaymarie Mino 49:47
Yeah, that’s not the name I’d call them but yeah.
Encouraging stroke recovery
Bill Gasiamis 49:50
But we wouldn’t be here without them. And they all deserve a little bit of respect and our good graces. And that’s fair enough. But there’s a lot of work to do. They’ve got a lot of work to do. I can’t believe that I still hear that story in 2024, where somebody was in the hospital and the doctor said, I will never walk again. Like, how do you know, you’ve got no idea.
Bill Gasiamis 49:53
You can’t say that to somebody, and then walk away and go about the rest of your day, like you did something good. There’s nothing good about telling somebody, they’re never going to do something again, you should avoid being so definite in your comment, you should encourage them to go after recovery, even though it looks like they may never walk again. You should encourage them.
Gaymarie Mino 50:19
This was my mindset, if I got 5% better than what I was, I’m getting good. Yeah, you know, and I have realistic goals. And they changed throughout the years as I got better and saw my results. But I mean, there was no way I was gonna settle. Because I’m, I want everybody to know you’re worth it. You’re worth it to try, you’re worth it to give it a go. And it doesn’t mean like two weeks on nothing change. I’m over it.
Gaymarie Mino 51:18
No! I’m seven years out and I’m still doing my exercise. I’m still, you know, trying to talk well, which I’m doing pretty well. I think he can understand me better now. I mean, this is a possibility. And just because you don’t have any deficit on the outside, I want people to know, you still have things going on inside your head. I mean, you know, a lot of people see me and have only recognized my physical deficit.
Gaymarie Mino 51:51
They don’t know my emotional my emotional center was messed up for like, probably six months after my stroke. And I was angry, and I cried, and I laughed at absolutely everything. I mean, people thought I was nuts. And I think but look at me now. I have my anger under control. I have my laughing under control. I laugh at the right things I’m supposed to laugh at. The only thing I can control now spying, but that’s okay, I guess.
Bill Gasiamis 52:23
That happens to me too. Every once in a while right at the wrong, and there’s no such thing as a right or wrong time. Like just a cry. That’s it. Bad luck. You don’t like it? Get the hell out of the room. I don’t care. I’m not upset. I’m not happy. I’m not mad. I’m just crying. And you have to deal with that. I don’t have to deal with that. If you’re uncomfortable because a grown man is crying.
Gaymarie Mino 52:46
It has to be harder for men, because of the stigma that real men don’t cry. Well, that’s a bunch of hooey. But also, I don’t want you crying at AT&T commercials either. You know what I mean? But I mean, real men cry. And it’s okay.
Bill Gasiamis 53:04
I used to cry at commercials and TV and all that kind of stuff. It’s like, my wife would go what are you crying about now? I don’t know I’m just crying. And she would tease me about it. In a joking, loving way, you know, she would tease me about it. You know, Bill is going to cry again. Oh, my God, you’re going to cry. And she would sometimes make it worse because I’m trying not to cry. And then I’d start crying. And I say you bitch like stop it, leave me alone.
Bill Gasiamis 53:37
We’ve kind of come to that point where we just accept that as it’s no different now to a grumpy face. Or, you know, or a silly comment. It’s just part of everything that happens in daily life. And you and the people that are around me who are uncomfortable kind of have seen it often enough now so that they’re not uncomfortable that right they know it’s not a disguise devastated cry. They know it’s not a severe emotional, negative cry, right? They know it’s just a thing that happens to him. And that’s not a big deal.
Gaymarie Mino 54:29
I wish people would understand, though, that we’re human. And I have pity party days. And I let myself have pity party days. Except I can camp there. So the next day, I better get off of math. And it’s over and I’m done. But I have pity party days. Some days I don’t know if you experience it but worse for me. I can’t talk I can’t walk my balances way off, I can grip anything you know, I tend to have tremors.
Mental therapy for stroke survivors
Gaymarie Mino 55:01
So if I tried to do something I haven’t even (inaudible) with this hand in seven years, and I was right-handed, haven’t written, I mean, those things sometimes bother me. But the next day I get off my ass and I go, Okay, well, back to holding my hand and trying to do it. So while we’re on that, do you believe that stroke survivors to get mental therapy as well as all the other therapies out there?
Bill Gasiamis 55:29
Yeah, well, you can’t recover from a stroke just by going to physical therapy, that’s not going to happen. Yeah, you need to combine your therapy with mental therapy and emotional therapy. They’re very different things as mental therapy is how you think it’s what you do with your thoughts. And the way you go about thinking about whether you’re in a problem, or you’re looking for a solution, whether you’re focusing on the issues, or focusing on the results.
Bill Gasiamis 55:58
So it’s like how do you mentally apply your brain to help you with your recovery, and then the emotional stuff is pretty clear. Everyone knows what that’s about, right? emotional recovery is about how you feel about things. How you feel about your new body, how you feel about the future, how you feel about the past, how you feel about your relationships, how they impact you, positively, or negatively.
Bill Gasiamis 56:27
So you have to do a lot of emotional work. And people go to psychological counseling, and they might focus on just sometimes you go to a psychological counselor, and they focus on just all the stuff, that’s terrible, you go there, you leave feeling worse, you know, and these are all my problems and all that kind of stuff, you have to come to stroke with a solution focus.
Bill Gasiamis 56:53
So I’ve got all these problems, this is the list, which one can I solve first, and then you, you pick the easiest one, and you solve that one first. So you get a win on the board. And then you pick the next one and the next one. And then slowly, as you go towards the top of that to the hardest ones, you’ve resolved a lot of those little issues that are bugging you that are niggling at you.
Bill Gasiamis 57:15
And they’re no longer in the way and you have more energy to solve the bigger problems. And you can’t find solutions to problems when you’re just focusing on your physical recovery. You can’t, I can’t walk properly. So I’m going to put all my effort into walking, and not think about how not being able to walk is affecting you emotionally. And then how not being able to walk is affecting you mentally.
Bill Gasiamis 57:46
You have to be able to go, I’m going to do physical therapy, and I’m going to try and work out how that’s bothering me emotionally and how I can apply my mental state to solving the I can’t walk problem. And then only then do you have this complete approach to recovery.
Bill Gasiamis 58:08
Because I’ve spoken to stroke survivors, who will tell me that 10 years down the track, they avoided the emotional recovery. And that their stroke, the difficulties, and the challenges that stroke causes. And at some point, I had an aha moment, and I realized, I think I’ve got to go back and deal with that stuff.
Gaymarie Mino 58:34
The only thing art because I tried to find I only tried twice. But the two that I did find they’re more interested in my calf herd. And, you know, it’s not about that. I’m fucked up. Now. You know what I mean? I’m like, You need to deal with me where I’m at. Now where I was, where I’m at.
Bill Gasiamis 58:58
I’m gonna say but. A lot of the things that when I coach stroke survivors to get through their stroke, they think that I’m working with them to overcome stroke. It’s not true. I always help them overcome shit from the past that’s getting in the way of their stroke recovery.
Bill Gasiamis 59:19
And it’s the things that we haven’t dealt with from the past that make us behave a certain way that get in the way of our recovery. And when the problem is, is that your particular counselor may have not realized that for that session. You needed to talk about today. And when you’re in that session, and you want to talk about today, that’s what you talk about.
Bill Gasiamis 59:48
At some point the conversation has to be steered to if you’re feeling a certain way today, have you ever felt a certain way like that in the past? And if you have, what was behind that, what do you think that thing in the past made you feel that way? And then is that appropriate for you to be feeling that way in the future? Or in the present? Can we deal with that in the past so that we don’t have to feel it in the future or the present?
Bill Gasiamis 1:00:21
And that’s the thing, like, when the nurse tells you, I think you mean this. And you go, No, that’s not what I meant. Let me finish. And you’re in session with a therapist and your therapist goes, I think we need to talk about your past. And you’re going, No, we need to talk about right now because I want to vent, I’m angry, I need to get it off my chest. And then when I’ve done that when I’ve got it off my chest.
Gaymarie Mino 1:00:52
And then we can work out the other shit, right?
Bill Gasiamis 1:00:54
Yeah. So it is a combination of things that they need to talk about. But they need to be very skilled at allowing you to be for today’s session, to be just one that you’re not solving any problems. You’re just lying down. I suppose. All the challenges, you’re just saying, Here, they all are bloody This is how many there are.
Bill Gasiamis 1:00:54
And that’s it. That’s all today is. And at least by allowing you to do that what you’re doing with your head is you’re going on maybe I’ve put all my problems in order. And now I know what they look like, for the first time grasp them. And I know what they are. And then it’s like, okay, let’s pick the next one. And let’s break it down. But they’re interrupting your flow in a session and trying to divert it.
Dealing with the past while in stroke recovery
Gaymarie Mino 1:01:19
They don’t care. That’s how I felt they didn’t care because I wanted to talk about one day, I was 46, a single mom going to work. Everything was normal as it was. And then the next day, life over a whole different person, a different life, a different situation. The second thing I want to talk about is my son, he was 17 at the time and he left.
Gaymarie Mino 1:02:15
And I have not spoken to him since then. And so I wanted to talk about that. Explain to me why you think that is. Help me understand what he’s going through. And I mean, over the years I have come to do that. But I mean, I need the help then. I was so depressed, I didn’t want to do anything. And that’s what I needed to deal with at that time.
Gaymarie Mino 1:02:40
So I said, Well, forget it. I’m gonna try another one. Which is the same thing. Well, you have abandonment issues. No, my son left me so he is kind of abandoned. You know, I mean, it was just, I don’t know, I just didn’t feel like they cared what happened to me. They didn’t want my money that’s what I felt like.
Bill Gasiamis 1:03:06
might have gone, you might have found the wrong one. And that’s our responsibility to keep looking for the right one. That’s, yeah, it is. And that’s what I do. I don’t take shit from any medical professional if I don’t like what they’ve got to say to me if they’re not if I don’t feel like they’re part of my team. They’re off the team. They’re out. And I’m looking for somebody else. You know, I left one hospital. And I found a new surgeon at a different hospital to do my brain surgery because the doctors were talking about me, they weren’t involving me in the conversation. Right.
Gaymarie Mino 1:03:37
Not to you, at you, or about you. I found that too. That was frustrating.
Bill Gasiamis 1:03:44
Yeah. So I think you’re, you’re it’s good that you try and you try again. And that’s why you’re not going to You wouldn’t want to talk about your son not being around and you’re not going for a diagnosis. You don’t want to know what the hell’s wrong with you. You want to, you want to go there and you want to go?
Bill Gasiamis 1:04:02
Like, this is how this situation is making me feel. Now, if she or he helps you deal with how you feel about that. And let’s say you can put those feelings to rest and they go away, then that might shift your mood and your mood, right? And you might be able to reach out to your son in a new way that you’ve never had before.
Bill Gasiamis 1:04:26
And then he might say, she seems different. Maybe, I will chat with her because you’re not going to him emotional anymore. What you’re doing is you’re going to him level-headed, clear of emotions. And you’re just gonna go you know what, he’s my son, I’m going to reach out to him that their job is to is to get you to that point where you’ve dealt with the negative feelings.
Bill Gasiamis 1:04:52
And you’ve changed your mindset so that you can try again. And then if that fails, and then you have negative feelings in a negative mindset again, it’s again to help you deal with the negative feelings, right? You can put them to rest, and help you shift your mindset. Look back at it in another way and go, Okay, let’s, let’s go forward again. Let’s have another try and keep trying and keep trying.
Gaymarie Mino 1:05:17
I was very irrational. I was I was all over the place. I’m like, oh, everybody’s leaving me. Look at me now I can do anything. I mean, I was in the lowest of my lows. And I was just hoping for somebody to be rational and say, Okay, I’m a very methodical person.
Gaymarie Mino 1:05:36
So okay, you feel this way today. So tomorrow, you’re going to brush your hair. You know what I mean? And then think about why you don’t brush your hair. Does that make sense? I mean, like, I needed somebody to like, give me a guy to function. Yeah. And be rational, where I was very irrational. Very irrational.
Bill Gasiamis 1:06:01
Yeah. And look, maybe you weren’t the right client for that particular counselor as well.
Gaymarie Mino 1:06:08
Well, I think my expectations might have been too high, too, because I was looking for somebody who understood about strokes. And I don’t think there are many mental health professionals that I’ve encountered, who have dealt with that before.
Gaymarie Mino 1:06:28
Because I, you know, I’m a big fan of I have PTSD. Because my whole life changed. I mean, sounds freaked me out still. There are a lot of things that I wish people would try to zero in on and focus and I don’t give a shit.
Bill Gasiamis 1:06:48
Yeah. I think I think it’s fair and reasonable. Especially when you’ve had a stroke, and there’s been all these changes, and you’re going through a tough time, to have some expectations of the people who are helping, that they might be able to help. I think it’s fair and reasonable.
Bill Gasiamis 1:07:09
But it’s not uncommon, what you’re saying that people get disappointed in the helpers and that they feel like their helpers are not helping. And then they feel like they’re not equipped to deal with stroke and all the stuff that goes with it.
Bill Gasiamis 1:07:25
And in one way I understand them. And in another way, I understand the counselors and the helpers, because they’ve never had a stroke. So even though they know, yeah,
Gaymarie Mino 1:07:40
I probably thought the same way. Before I had my stroke. I was under the impression only older people have strokes. I had no idea about younger people having strokes with my first you know, but I know, it just makes me sad that I just want somebody out there to care.
Gaymarie Mino 1:08:04
Even if you don’t have the answers. Lend me your ear. And let’s go through this together. You know what I mean? I think that’s why I like the community we’re in. Because people do care. People do. Listen, you know,
Bill Gasiamis 1:08:19
it’s what you said what we said earlier, it’s like, if you don’t know what to say, you don’t need to say anything. Like, just,
Gaymarie Mino 1:08:25
exactly. Just be there. I don’t know what well, they thought therapy was supposed to be like, but it was not that. Because it was like, they wanted us to ascribe me to anti-depression medication. I’m like, there’s a difference between being sad and depressed. And I was sad.
Gaymarie Mino 1:08:48
I mean, most of my family left, I was all my friends. My whole suit. I mean, I just showed you a picture of me. I look so different. And everything changed. And I couldn’t see I couldn’t talk. I mean, I just want somebody to listen, I guess. And then yeah,
Bill Gasiamis 1:09:12
and then to depressant medication. In that particular situation, might be like a, like a sort of like a way to decrease the people’s emotional response, and to try and come up a little bit. And then
Gaymarie Mino 1:09:27
No, I had anxiety medication, which helped. Yeah, but it was different than this stuff. This stuff made me like not care about anything. I was a zombie. Yeah.
Bill Gasiamis 1:09:39
And that’s kind of part of it is to interrupt the pattern that antidepressant medication is interrupted that pattern that people are in. So that’s kind of why they prescribe it a lot.
Bill Gasiamis 1:09:49
The other part of anti-depression medication for somebody that is in your state, for example, after a stroke, and goes through all those changes all at the same time is it kind of gets in the way of helping you work out what your problems are, and then solving them promptly.
Bill Gasiamis 1:10:07
And sometimes what I think antidepressant medication might do for somebody like you is delay the solution to the problem. And, like put it down the road, because we’re dulling all the emotions with darling, all of them, then, the feelings, and then they just come back later. So, yeah, you’re still gonna have to deal with them.
Bill Gasiamis 1:10:30
It’s just when, and some people will not want to deal with it right now there’s too much on their plate, some people might be more solutions-focused on wanting to deal with it now, even though they’re in a really bad way.
Bill Gasiamis 1:10:41
So it’s finding the right balance for you. And I feel like what you at least did was perhaps stumbled a couple of times, but they found the right version of the recovery that was going to suit you. And you went for that, even though they were trying to guide you to meds or diagnose you with a condition or whatever.
Overcoming stroke recovery challenges and personal growth
Bill Gasiamis 1:11:06
So like, yeah, like, my whole life is different, completely different. Of course, I’m going to have shit going wrong. And probably, well, that stuff. So it’s what you said, you know, I needed a guiding hand. And somebody to lead me down the path. Because
Gaymarie Mino 1:11:23
it was very overwhelming, very overwhelming. I’m sure. I mean, I couldn’t go to work anymore. My lifestyle is completely different than what it used to be completely different. I couldn’t drive I couldn’t, you know, type. I couldn’t text I couldn’t talk.
Gaymarie Mino 1:11:41
I mean, my whole life was changed. And so I was that I wasn’t impressed, because I still got up every morning, I still tried everything I didn’t, you know, I know.
Bill Gasiamis 1:11:57
Yeah, they’re very valid points, everything you say is pretty valid. I think it’s all stuff that I’ve considered at one time or another. And then, as you get further out, you know, at seven years, I probably would have responded differently to what I’m responding now at 12 years.
Bill Gasiamis 1:12:12
Yeah, you know, so you have a very different, you develop you, your thoughts over the next few years. And you’ll look back on it differently. But, but I think you’re doing great because you’re still demonstrating how terrible things were.
Bill Gasiamis 1:12:33
And now, how things have changed and shifted for the better. Regardless, you’re being proactive, you know, you’ve got your channel, and you’re trying to put content out there, and you’re trying to meet people, you’re doing all the things that I started doing way back when. And what that does is that pays off that pays dividends.
Bill Gasiamis 1:12:54
And you get results at some stage, whether they are changes in the way that you feel about yourself, or you met an amazing person. So you’ve opened your circle of people further, or, you know, for me, it’s writing a book, it’s going on other people’s podcasts. I’ve interviewed, I’m going to interview a gentleman who’s going to interview me a guy called Nurse Keith.
Bill Gasiamis 1:13:19
And I had no idea about the particular podcast that he does. And who is involved with in what communities are involved? So he interviews, nurses, it’s more about providing information to nurses about everything. So now I’m going to be the first stroke survivor who goes on his podcasts and talks to nurses, right? So isn’t that great that I’m gonna get to do what we’re saying?
Bill Gasiamis 1:13:46
It took 12 years, but I’m going to do it, I’m going to talk to them. So they have a different understanding of what it’s like to deal with a stroke survivor. And then hopefully,
Gaymarie Mino 1:13:58
that’ll lead to other people, other health care providers wanting to know. Yeah, knowledge about us. Yeah,
Bill Gasiamis 1:14:07
correct. Right. And then Keith is part of a network of podcasts, that some guy in the UK in the United Kingdom operates called the Health Network podcast, the the health podcast, something like that. Now, I don’t know who this guy is. But I didn’t know there was a network of podcasts that some meter was promoting that were related to health.
Bill Gasiamis 1:14:35
So you know, he’s thinking he’ll reach out to that person. So all the things that I’ve done, to solve all those problems that I had at the very beginning, people not understanding, you know, medical professionals not going about things the right way or that that’s all now starting to come together to impact them positively, and address some of those issues that I had with them way back when
Gaymarie Mino 1:15:01
So you know, that kind of leads me to why the title of your book, then you tell people what the name of it is?
Bill Gasiamis 1:15:12
Yeah, it’s a weird name, isn’t it? Yes, the unexpected way that a stroke became the best thing that happened. So the first time I spoke about the book on my channel, my YouTube channel. Somebody, the first response I got was, this is ridiculous. How could you be promoting stroke as something for people to experience and all that kind of stuff
Gaymarie Mino 1:15:39
for which you’re not. And you have
Bill Gasiamis 1:15:41
Did you miss the point completely? Right, just read the title, the unexpected way, it was unexpected. That stroke became the best thing that happened. I didn’t see it coming. And clearly, it wasn’t the best thing that happened at the beginning. It just became that. And I’m still living with all the deficits and the stuff that stroke has caused.
Bill Gasiamis 1:16:07
But I have grown so much as a person I’ve developed so much further and deeper than I ever would have if wasn’t for the stroke. When I look back on it, from a personal growth perspective, it’s the best thing that ever happened to me.
Bill Gasiamis 1:16:24
Now, do I want people to have strokes? No. I do have strokes. is a fun? No. Is it easy when people have strokes on family or friends? No, none of that stuff’s good. All that’s terrible.
Bill Gasiamis 1:16:41
However, there’s a silver lining and the silver lining is that in the search for solutions to my problems, I did all the things that you and I spoke about, I reached out to people, I needed to connect with people, I needed to share the information I needed to learn information.
Bill Gasiamis 1:16:58
I created a podcast. And as I created the podcast and started to have many of these conversations, after about 50 or 60 conversations, I realized how far I’ve come. Yeah, I’ve met these people and what I’ve learned what I’ve overcome, and what I’ve grown, and how I’ve helped those people overcome, that’s what you learn.
Gaymarie Mino 1:17:20
Yeah, that’s amazing. What do you learn, given a pass it on to other people, too,
Bill Gasiamis 1:17:25
to make their recovery easier, you know, and they passed stuff on to me to make my recovery easier. And I never had such a community before stroke. I didn’t have such people who understood me so deeply, who were willing to meet a stranger on a podcast and have a conversation for over an hour. And we got along like a house on fire.
Bill Gasiamis 1:17:47
So my car that I didn’t know people like this existed my world entirely became a more amazing thing, right? And I said for, I didn’t realize I was saying it. And I said to this particular person during the interview, I said, I think strokes are the best thing that happened to me. And then, and then I kind of oh my god, like what did I just say? And that person said the same thing to me. And I was stunned.
Bill Gasiamis 1:18:18
I didn’t believe that. Another person could get to that stage let alone me. So at around that time when I had this idea, one of the people who I write about in the book is one of my teachers guy called Marvin Oka, he was running this particular course, it’s called the behavioral modeling course. And what they do is they model behaviors of people that you want to replicate.
Bill Gasiamis 1:18:45
For example, like a world champion, athlete, or maybe a diver, you want to model this system that they do internally in their body, how they think, how they talk to themselves, how they behave, how they train, how they dive, how they move off the board, you want to understand like what a gold medalist does.
Bill Gasiamis 1:19:05
And then you want to tell that to somebody who’s just coming up in the ranks and you want to teach them. This is what a gold medalist does differently from what you do. So they model people’s behavior, and they teach other people. So, my friend, Marvin Oka was running this course.
Bill Gasiamis 1:19:22
And he said, When you come to the course, it’s a behavioral modeling course you’re going to have to learn the method that we’re going to use to teach excellence to other people. But you have to have a project to do. You’re not just going to come and learn this stuff. You have to start a project when you come to this course.
Bill Gasiamis 1:19:45
I went there not knowing whether it was possible but They said, what’s your project and I thought, I think I want to do more projects is going to be like, is it possible that other people think strokes the best thing that happened to them and if it is how How did I get there?
Bill Gasiamis 1:20:02
And then I had about 4000 followers on Instagram at that stage. And Marvin said, Why don’t you ask your Instagram followers? If anyone else can say, amazing,
Gaymarie Mino 1:20:16
right? And I would never think that
Bill Gasiamis 1:20:20
yeah, I asked them and they all said, No, it’s the worst thing blah, blah, blah. And then there were about 12 people who said, Yes, it’s the best thing that happened to me. And that’s it. We were on. And then I was like, Okay, let me interview you, and find out what we had in common.
Bill Gasiamis 1:20:40
And that is what the book is about. So this is what they had in common. I’ll briefly go. Yeah, please. So they had that I had, they had a stroke recovery mindset. Okay, so this was obvious. It came out in the interview, that like was obvious that they had a mindset that was about solving problems and recovery, not a pity party mindset. Most of them. They did recover.
Bill Gasiamis 1:21:08
Sometimes, like you and me, we did pity parties, but pity party was a very short amount of time. Then, remember, we spoke about the gut brain? Yeah, they attended to their instinct, Wow,
Gaymarie Mino 1:21:27
that’s crazy.
Bill Gasiamis 1:21:28
They didn’t use those words. But they attended to their gut, their identity, which by the way, your identity resides in your gut, your gut instinct, they tended to listen to their gut, and they tended to be guided by their gut. So they did that. Then they listen to this one, then they attend to their emotional needs. Okay. And the heart, by the way, has neurons in it as well.
Gaymarie Mino 1:22:02
So I did not know that either, right?
Bill Gasiamis 1:22:05
The heart has between 30,000 and 120,000 neurons. And it also is intelligence because sometimes we use gut language and we use our language when we say stuff, like, I wear my heart on my sleeve. Or my heart was not in that I wasn’t, I wasn’t gonna do that. My heart’s not in it. Or people say I followed my gut. Yeah, okay. So well, that’s not the head.
How stroke led to finding purpose
Bill Gasiamis 1:22:36
We’re not dealing with head intelligence. These are other emotions, so they’re tied to the emotional. Then they discovered and learned about Neuroplasticity, and they started to iThey Neuroplasticity changes. They understood that going to therapy, physical therapy was rewiring the brain, and they dealt with that.
Bill Gasiamis 1:22:57
So in that chapter Neuroplasticity chapter also talks about the negative side of Neuroplasticity, which is when you’re, when you’re thinking negatively and being negative, and that’s all you’re doing, you’re negatively rewiring the brain. So you’re using Neuroplasticity but for evil. So then, they also attended to their nutrition.
Bill Gasiamis 1:23:23
They improve their nutrition, they stop drinking something or they start eating something or they stop smoking or they start this or they stop that then they all in the end sleep better. sleeping better.
Bill Gasiamis 1:23:39
So one of the things about sleeping better is that it’s when your brain is being flushed of toxins in the middle of the night when you’re sleeping part of the sleep cycle, it decreases the size of the brain cells. And as they decrease, cerebrospinal fluid can go through the brain much easier. It flushes out the day’s toxins and it gets them now right
Gaymarie Mino 1:24:07
here.
Bill Gasiamis 1:24:08
Right? So that’s that they what else did they do? I said nutrition I said sleep they started following their heart’s desires. This is a cool one. Right? So you might have felt this as well because I felt it and I didn’t know what was happening at the beginning. It was like all of my decisions just to be head-based. I need to work more. I need to do this. I need to do that.
Bill Gasiamis 1:24:42
I need to buy this car I need to buy this house. I need to do that I need to do this. And then it started beginning it started going well. I don’t give a shit about making more money now. Like I want to do something that I love and that I enjoy. What do I love, or enjoy I want to go on a trip or I want to experience this I want to go to a show I want to see a ballet, or whatever.
Bill Gasiamis 1:25:01
And I started to do things that I enjoyed. So they started to attend to following their heart’s desires and live heartfully. I call it living heartfully instead of mindfully, they’ll start living heartfully. Then they started to help out other people, and they improved the community.
Bill Gasiamis 1:25:23
So some people left their communities. Some people who came into their community, then reached out to other people to bring them into the community. And they just their friendship group changed, almost by itself, but also with a little bit of fine-tuning by them, and they found new people who were going to support them in this journey.
Bill Gasiamis 1:25:47
And then all of them said that they found their purpose. But they didn’t start with purpose. That didn’t start with I’m going to go on life purpose. They did all these other things, and then their life purpose emerged. And it’s what happened to me and my life purpose became, I think I’m gonna do a podcast about strokes of my life.
Bill Gasiamis 1:26:13
Yeah, and it’s not I didn’t know that that was gonna be my purpose. When I started the podcast, it was selfish, I started to help me recover to help me. And then it became, oh, my God, this is not just about me, this is about other people.
Bill Gasiamis 1:26:28
My purpose emerged, and they found that their purpose demerged, and it was always related to helping other people, supporting other people, and teaching other people like helping them grow, and overcome. And it’s like, wow. So when you go back to stroke, and you think all these things happened, because I had three brain hemorrhages.
Bill Gasiamis 1:26:52
Right? How could a stroke not be the best thing that happened to me? It doesn’t matter what the deficits were. It doesn’t matter how bad they were, how good they were, it doesn’t matter what I have to live with.
Bill Gasiamis 1:27:04
Whether they’re working or not working, it doesn’t matter what background they’re from, what culture they grew up in, it doesn’t matter what color their skin is, it doesn’t matter what their religion is. All the people that I interviewed are completely different. All of them think that stroke was the best thing that happened to them. All of them had those 10 things in common. We had a title but the truth?
Gaymarie Mino 1:27:28
Well, it’s a good time, because it made me stop and go hmm. I mean, but I think when you put it that way, and it’s explained that way, I think more people need to realize we’re never going to be those people we were pre-stroke.
Gaymarie Mino 1:27:47
I’m a different person now. To be honest, I like myself better now than I did back then. And I think that’s one of the advantages of having a stroke is I didn’t have a choice. I had to become this person. And I’m glad I did. Now, is there any other thing?
Bill Gasiamis 1:28:11
I just want to go back to things, say you remained your old self, could that old self recover from all the stuff that you were dealt with? If you stayed the same?
Gaymarie Mino 1:28:27
I don’t think she would have cared. I mean, let me rephrase that. She would have cared, but she would have gone on but in a different way. Like, okay, that happened to me. I was very tough, very victim-ish, I guess. Like things happen to me. And I’m like, yeah, that did happen. But I’m not going to be a victim because I figure how you act is half the process.
Gaymarie Mino 1:28:59
And she was like, everything happens to me, why me Poor me? Like, well, that was me in the beginning. I’m gonna be honest, but now it’s like, no, forget all you guys. I’m gonna show you and watch me go and who comes along with me? What a privilege to see me blossom into the person I’m becoming. That might not mean like, what do you call it conceited or whatever? It’s just, it’s a privilege to watch this process.
Bill Gasiamis 1:29:32
Yeah, it’s the truth.
Bill’s future goals
Gaymarie Mino 1:29:37
So are there any other goals publicly or privately you’d like to achieve for yourself?
Bill Gasiamis 1:29:44
So the podcast has, you know, been a labor of love. I’d love it to become my full-time job. That’s probably what I would like it to be so that I can do it more, wholeheartedly than I’m doing it now. Because now I’m doing it part-time, so to speak in my spare time. And then I’d love to be able to do public speaking about it regularly and share the story of how to turn the worst thing that happened to you into the best thing that happened to you.
Gaymarie Mino 1:30:20
But you’re doing that, aren’t you?
Bill Gasiamis 1:30:21
I am to an extent, but I’d love it to be my career, where it’s not at the moment. But that’s about it. I don’t have any other major goals and I want to write another book. I think I know what that book is going to be about. But that’s maybe a couple of years away.
Gaymarie Mino 1:30:37
Was this your first book?
Bill Gasiamis 1:30:39
Yeah, this is again, this is another thing like the best thing. I’ve never written a book. I didn’t even know how to write a book.
Gaymarie Mino 1:30:47
I don’t know if I have the attention span to do a book.
Bill Gasiamis 1:30:50
Well didn’t either. But it took four years like, yeah, it’s hard for a stroke survivor to write a book. I didn’t write a book when my brain was working, you know. So I think I want to write another book and speak to a few more people publicly. And just be the biggest podcast about stroke recovery in the world.
Bill Gasiamis 1:31:14
You know, why not be that I think they’re my goals. No matter what is happening out there, with all the great things that people are doing, there’s still not enough information, there’s one in four going to have a stroke in their lifetime. Which means that I’m never going to be able to meet the need by myself. Other people are going to have to do that as well. So that’s it. They’re my goals.
Gaymarie Mino 1:31:42
One thing, that’s one thing that’s great about doing what we do is we make a bunch of people feel the same way. And they’re doing amazing things that either are in Poke ly, or they’re not, but they’re still doing amazing things. And every time I interview somebody, or talk to somebody about this, I always learn something.
Gaymarie Mino 1:32:07
And that’s the best part about what we do is we keep learning, there’s always something to be learned and to be shared, you know because you have helped me today. And I appreciate it. And I know my viewers are going, oh my god, this is amazing. So I appreciate it. And again, I’m sorry. The other day, I thank you for being so gracious and patient with me.
Bill Gasiamis 1:32:36
Absolutely. It was my pleasure, no trouble at all. Thank you for having me.
Gaymarie Mino 1:32:40
Thank you. I hope you continue healing 100% And as I always say to my viewers, celebrate every victory big or small, because that’s really what it is about. So, thank you again, Bill.
Bill Gasiamis 1:32:56
My pleasure.
The post Stroke Recovery interview with Bill Gasiamis appeared first on Recovery After Stroke.
1 hr 33 min
February 12, 2024 From 3 Strokes To Author – Keith Rush
Keith Rush 3 Times stroke survivor has become an author to help fund specialized equipment needed to help him with his mobility after the strokes.
Episode 229
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KRUSH: ER & the Strokes: The Survivor of a Stroke
It’s all about the T Paperback
Highlights:
01:38 Introduction
06:12 Having the third stroke on the operating table
09:08 Looking for support
15:29 Looking for sponsorship for the book tour
26:18 Nothing can get done without money
29:26 It’s All About The T
38:32 Support the Recovery After Stroke Podcast
Transcript:
Bill Gasiamis 0:00
Hello, everyone. Thank you once again for tuning in to another episode of the Recovery after Stroke podcast. My new book about stroke recovery is called The Unexpected Way That Stroke Became The Best Thing That Happened. 10 tools for recovery and personal transformation, and is now available for purchase on Amazon.
Bill Gasiamis 0:22
The book tells the story of 10 stroke survivors and how they got to that stage in their recovery, where they were able to reflect on their journey and say that from a personal growth perspective, stroke was the best thing that happened to them.
Bill Gasiamis 0:38
Recently, I received some awesome feedback from one of the people who purchased the book, which is a great read by Bill Gasiamis, aka Recovery after Stroke. There are things that I’m trying to figure out regarding how to change moving forward as a stroke survivor, mainly how to get enough rest, which has always been an issue for me.
Bill Gasiamis 1:00
There are many topics covered in this helpful book. And I recommend that to anyone interested. So it’s cool to receive feedback in a positive light about the book, and I am grateful when somebody goes to the trouble to send some feedback and to make a post on Instagram, it’s amazing.
Bill Gasiamis 1:20
So I appreciate the support. If you’ve had a copy of the book you’ve read it, and you have some feedback for me, I would love it if you’re able to send me your thoughts. Give me a little bit of an update on what you thought of the book on how it helped you.
Introduction – Keith “Krusher” Rush

Bill Gasiamis 1:38
It’s been awesome to discover how this book is making a difference. Now this is episode 290 And my guest today is Keith “Krusher” Rush, who previously joined me on episode 229 When he was promoting his first book, which was written to help raise some money for equipment and other necessities after his brainstem stroke, which was caused by a burst AVM. Keith the Krusher Rush. Welcome back to the podcast.
Keith “Krusher” Rush 2:15
Yes sir.
Bill Gasiamis 2:16
How are you mate?
Keith “Krusher” Rush 2:18
Hey man I’m blessed
Bill Gasiamis 2:27
It’s Thanksgiving weekend. Are you celebrating it?
Keith “Krusher” Rush 2:29
It is Thanksgiving weekend and I’ve been eating you know I’ve been celebrating, eating everything inside. I think I had four rounds yesterday so I’m good.
Bill Gasiamis 2:53
That’s good. That’s good. What are you thankful for?
Keith “Krusher” Rush 2:57
I’m thankful to be alive, man. I’m thankful to God that he blessed me to be alive today. No matter what, no matter what I’ve been through. Every day is a struggle, but I’m still here.
Bill Gasiamis 3:16
Good to have you here. Man. I’m gonna talk about your book. Last time you were on the podcast. We spoke about the book right?
Keith “Krusher” Rush 3:24
Yes, sir. You got a copy too, and I have a new book that’s out too.
Bill Gasiamis 3:33
All right. Before we talk about the new book, let’s talk about the old book because last time I didn’t have a copy of the old book. Well, it’s not old, it’s very new, but it’s the first book, right?
Keith “Krusher” Rush 3:45
Yeah, it’s my first book. The first book I did when I had a stroke was a book that I didn’t know what I was doing it could be a comedic type but I kinda didn’t know the format but I kept writing. So this one is one of many, I have 261 other books. All different titles I was learning from that one book.
Bill Gasiamis 4:37
This is the first one. There are 260 more to come. But don’t worry about those. We won’t talk about those. I just want to talk about this one for a little bit. And then we’re going to talk about the new one, right? So yeah, in this one here, I want to talk about the headings.
Bill Gasiamis 4:52
So I’m going to read the chapter headings. And it says Krusher had a stroke based on a true story. we’ll keep going here comes a big one oh so there’s more more a little bit of more pain and suffering that was coming along but as you keep going through the book you do describe kind of your journey and the things that you had to overcome and the things that you work through.
Keith “Krusher” Rush 5:21
Yeah, I talk about the hospital stay like Oh-oh, here comes the big one just to try to make it funny.
Bill Gasiamis 5:42
Tell me about the big one.
Keith “Krusher” Rush 5:46
I meant for it to be funny but serious and funny all at the same time. To make you laugh and even cry. And then I didn’t know what was going on but I had that third stroke on the operating table.
Keith “Krusher” Rush had the third stroke on the operating table
Bill Gasiamis 6:12
Yeah. You had that first stroke on the operating room table?
Keith “Krusher” Rush 6:15
No, it was the third one, the one-stroke the two-stroke, and then the three-stroke the third one was on the operating table and everything. I just wanna make it happen, just write something down.
Bill Gasiamis 6:43
Why were you on the operating table?
Keith “Krusher” Rush 6:47
I was on the operating table because of the second stroke they found out what the stroke was it was called the AVM arteriovenous malformation and it was basically where the blood vessels got jumbled up in my brain and my blood vessels at the spine on my neck at the base of the brain stem.
Keith “Krusher” Rush 7:33
Yeah, it was in the brainstem and the third stroke, that one the doctor was operating on the second stroke because at first, they didn’t know what it was really. And I don’t know what happened. I was knocked out, I was unconscious and everything.
Keith “Krusher” Rush 8:05
But I just know from all of the notes from my journal. My diary that my mom told me, and my sister had all my family and everything.
Bill Gasiamis 8:24
How old were you?
Keith “Krusher” Rush 8:26
I was 27 years old. And now I’m 41 years old. So you can live with a stroke. It takes time. It is hard every single day. But you can live with stroke because I’m living for this long I was in the prime of my life at 27 years old, had a car and I house, good job, good credit, and everything. I was just looking for a wife.
Keith “Krusher” Rush looking for support

Bill Gasiamis 9:08
And then you came home and your mum was your caregiver?
Keith “Krusher” Rush 9:13
Yeah, my mom was my caregiver then but now she is I won’t say she’s disabled. I’ll just say she’s aging, now I’m happy to be the caregiver for her. I’m the one who has to do everything so that’s pretty much why I wrote the book. Because I was looking for help.
Bill Gasiamis 9:49
You are looking to sell some books, to raise some money to support yourself and your mother because you are a proud gentleman. You do not want handouts you want to offer something to get something in return and what you’re offering is some of your story in the form of a book. And then what you’re hoping to do is raise some of that money so that you guys can put it to the things that you need.
Keith “Krusher” Rush 10:16
You got it, you hit the nail right on the head. There was our bill. Yeah. For some reason, some breezy God just told me to keep Dr. King right game right. So did I have that that was the Bill Soundworld That’s what Outdoor wrote this first book. Did I write to you? I’m just seeing the wild off the books.
Bill Gasiamis 10:43
Now the second book, you’ve got a copy there. Show us?
Keith “Krusher” Rush 10:47
Yeah, I do. The second one is all about 50,000 words is chronically the High School Championship game of my Alma Mater, my hometown. My Home Town Football team is called the Thomson Bulldogs. And it is crowded going in. You can pick this one up at Amazon. It’ll be on my website soon.
Keith “Krusher” Rush 11:27
As soon as I get enough money to get from the other book to get this book on my website, I have a website www.krushthewriter.com.
Intro 12:06
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 12:30
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke. 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.
Keith “Krusher” Rush 13:09
Yeah, it has my book on sale my third book. As soon as I get a couple of hundred dollars I’ll put this book up there for sale but you can pick up this book if you email me on my Facebook account. I’ll send you a little link Bill you can get the ebook version or you can buy the paperback version for like $13 is the paperback version or the ebook version is like $3. But if you’re a big baller so be it have to get a couple, not one, not two, not three but 500 or 1000 copies.
Bill Gasiamis 14:29
It’s not essential to buy one copy you can buy more than that. 500 or 1000. I love it. I love it. Now you ended up on television. Were you on some kind of a morning show or something promoting your book?
Keith “Krusher” Rush 14:52
I sure was I was on a couple of things, a morning show, one on one, a parade, they ran a commercial about me, and I’m trying to make a big splash.
Bill Gasiamis 15:25
And did you also do a book signing?
Keith “Krusher” Rush needs sponsorship for the book tour

Keith “Krusher” Rush 15:29
Yes, sir I did, I did didee three book signings and I got some more to go because I’m gonna go on a little tour with this thing. I need some sponsors, I need these to help get some sponsors to get some things together. Where I would like to go on this tour because I would like to go on the tour, I would like to take my books and display what I want to hit the state of Georgia.
Keith “Krusher” Rush 16:30
All the East Coast of America, all across the West Coast I wanted to go on the door. But that is gonna take sponsorship. And I’m gonna need some heavy-duty sponsorship I just need to get it, make it proud, and make it loud.
Bill Gasiamis 17:04
You need some sponsorship. You want to do a tour most of the tour will be about Georgia, your home state I believe. And then you want to take this tour on so that you can get promotions so you can sell more copies. How are the book sales coming at the moment with the first book?
Keith “Krusher” Rush 17:11
Yeah, I want this thing to go worldwide because the first book is the first book, it’s gonna be what it’s gonna be, I got another book.
Keith “Krusher” Rush 17:39
The first one and a half is selling, the other one got to get proofread the other one is gonna be a reloaded version of my my mom, I’m gonna be like the executive producer over there. I’m gonna let her edit it out.
Bill Gasiamis 18:24
So mom’s doing a book as well?
Keith “Krusher” Rush 18:26
I tried to let her like this was going to be a family affair. Yeah, I want all my family to back me up and everything. This is gonna be a family fair. When it comes down to this other business. Everybody has something to say. I want everybody to have their voice.
Bill Gasiamis 19:11
How many copies have you sold so far?
Keith “Krusher” Rush 19:15
I don’t have the exact number. 70 sold in one month, 44 sold in another month.
Bill Gasiamis 19:32
So it changes all the time?
Keith “Krusher” Rush 19:34
Yeah, it changes every month that goes by it changes. I don’t know how much exactly. I do know this though. I’m in a brand new $12,000 wheelchair so whatever I need God will provide, it’s all about God he will provide for me.
Bill Gasiamis 20:13
So you got a new wheelchair?
Keith “Krusher” Rush 20:15
Yeah I did, actually I had to get a motorized wheelchair because if I use my arms I get tired I suffer from constant fatigue and if I use my arm to wheel myself around I get tired super easily I almost pass out so I had to get one that’s an electric wheelchair.
Bill Gasiamis 20:53
Awesome so it was that made possible because you raise the money through selling the book?
Keith “Krusher” Rush 21:00
It was made possible because I made money selling books it got me $500 to fix my car was taught you know the money burned the book for a big book like Bill was listeners like yours all look watching this or listening to this. And purchasing not one like I told you, not two copies, not three but 50, or a hundred copies of my book you know that selling the book, all of it has gone to great use in this stuff that I need and my mom needs.
Bill Gasiamis 22:06
Your mom needs it because she’s having some trouble with her health at the moment
Keith “Krusher” Rush 22:12
Like I said don’t want to pay me to stay and don’t want to find as she says save as she is an aged nurse, get them back. And of course, you get sick as the older you get and never bad like booked when the doors would take this so many bills. They would work God that the prescription price got lowered a little bit.
Keith “Krusher” Rush 22:47
The depth check got brought down a little bit. But it’s out the things that go with the cost of medical care. Medical Medicare is that healthcare system is crazy right now. I’m just looking for White to release stuff but the pressure for her to release by the person for me is I want I have failures that need to be done. Like God did therapy I did not know this.
Keith “Krusher” Rush 23:33
But let me tell you one thing about it. Mr. Bill. Wild Bill everybody who you know, everybody who you know who’s in the wheelchair who’s disabled, they’re all going through money problems. That’s the main thing. Because no matter, who I’ve talked to I’ve been in the same thing. No matter anybody who I talk to. We all go through the same thing. My name is money troubles with me do want to give out prizes by myself.
Keith “Krusher” Rush 24:21
But what do you do? Both god I’m trying to make a way out with no way and I know that God’s gonna step down and go ahead bow egg goes step in their file. But my thing is out that I’m trying to do the right thing. I want to do the right thing.
Keith “Krusher” Rush 24:46
And what we all B is money. There’s just no M as a buzzer by the buzzer by the Wi-Fi All out everybody needs some money everybody was disabled if you had a stroke if you had if you guys every number you have to pay for even a doctor you have to pay for transmit days no buyer who I’ve talked to I’ve talked a lot of people I have a network of people.
Keith “Krusher” Rush 25:36
We our network a big threat to our Naira is the hand up those dreaded the EU girl Miss job to our night Miss during Guerrero Jr night dead Miss Katrina bras Miss Jennifer whant ad Miss have the bat the owl was way out in this together and all is gonna take by all of us it has Monday I just say like they have been advertising me everybody how’s the boy.
Nothing can get done without money
Bill Gasiamis 26:18
Nothing can get money also with some help you’ve been receiving help to write the first book are you still getting support with the other books that you’re writing? Is this somebody on the sidelines that you would like to acknowledge who has been helping you with this project?
Keith “Krusher” Rush 26:39
I certainly Ah I’ll start there writing get by myself but I recorded it all by myself but I’ve had help as far as like graphic design effort new way years he there my logo purse the rider logo it did my logo there and like I did Luis wanted out did the page the board tell the story the outline what it looks like it’d be out the A be out this love ah no to the Hall of mine that be to relive row that made them bad though store as someone that other big stores.
Keith “Krusher” Rush 27:51
I be exact get them producing and get off. Yeah, I’ve been putting my two cents on the story. Lie. Somebody does sound pie and amaze you I don’t know how good doors they handle but I know how to tell a story. So I’ve done this one that dude tells the story. And the soy is basically in the prayers but the curse or at the show as I said as a good bit I’m gonna read how to read do it and I’m gonna put my voice in it for people can hear me.
Keith “Krusher” Rush 28:47
Let me be the one who read it that read the book God I know how to store it and I know what nails the lab tractor wouldn’t use so they want to everybody that big confused they bag but most of the ones are operated much as maybe Telenav store buys.
Bill Gasiamis 29:21
So give us a look at the second book again. Give us another look at it.
It’s All About The T by Keith “Krusher” Rush

Keith “Krusher” Rush 29:26
Yeah, the second book is called It’s All About The T it’s not that long. My cousin told me nobody wanted to look at a pamphlet. Well, I got 261 pamphlets.
Bill Gasiamis 29:55
So it’s a short story about a football event that happened in your hometown?
Keith “Krusher” Rush 30:01
Yes the shores are bogged down and I have tools to show us drawers that know what burned a football game the championship game and the second one live for now Holcomb activities the second so story does I added there was about out what I was still counterclaim that I must fear and everything from the Vanda Verna from the activities that was gone on that day.
Keith “Krusher” Rush 30:48
And the whole combat give back and I ranted this Look girl. Her name is Jane Greer. And this little girl I’ll tell you a story real quick. Okay, when I first had my stroke and I was coming down Bahasa River and I came outside it was this small little town that looked bigger than everybody else would go and they were Colorado to me a great man but there was soreness that opened up my mouth and they hurt my doll-like did that love running? Zap shakes Greer she’s staying right there.
Keith “Krusher” Rush 31:45
She was like Mala Agdal but Gaza at that point I was taking a vice suicide I was I wasn’t thinking the body heavenly body had crossed my mind by looking across the way looking at the pills no I seemed to order by pills and like I got they torn the bow pills today just to live like how I don’t do that like at the outward to what we’re happy about the wall the wall right now.
Keith “Krusher” Rush 32:29
What does the gardener suicide by I did do it by the law I was smart enough not to do that I’m not doing that. But back to love best sacred may say prayer was standing on my dad she will boulders she will pray he was the only one that stayed and look at me look to my end ever then why am I lucky when the rain dip my baby but it was in stores like that that said the book there? The book is there the book is cause it’s all about tea. You You’re gonna pick it up by our bizarre Ah, you could pick it out by hours. But I was saying your beard the length and everything.
Bill Gasiamis 33:33
I’ll have all the links listed I’ll put all the links in the show notes so people can find them can connect with you. I’ll show some photos as well that people can use so it’s all a good look I appreciate it I’m gonna go on Amazon and buy my copy now and
Keith “Krusher” Rush 33:49
yeah, I look forward yeah I guess the major corporation of Thomson was Ross Amir you’re lucky if you have been you know I clap your hands Clap my head
Keith “Krusher” Rush 34:19
every day yes a very proud gate. If you feel Froggy. I’ll draw a line in the sand I wanted to beat up on Pride. So bow now one not two not three. But be the of 500,000 copies if you want to other books make it gold mag caked on life. Wow. Yeah, like I said, I feel like a frog. Good dead. Every bomb. I like that.
Bill Gasiamis 34:59
Thanks, Keith, I appreciate you reaching out. Congratulations on the next book. Well done on everything you’ve achieved so far.
Keith “Krusher” Rush 35:08
Yes, sir and you know what? If you’re happy and you know it clap your hands. All right brother.
Bill Gasiamis 35:40
All the best Keith be well, thank you for joining us on today’s episode. Hopefully, you can support Keith by going across to Amazon searching Keith Krusher Rush, and getting a copy of his book, we must be able to support people who are doing great things.
Bill Gasiamis 36:00
With stroke recovery, to grab a copy of my book go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 36:18
Thank you to everyone who has already left a review regarding the podcast it means the world to me podcasts live and thrive. Because of reviews. When you leave a review, you’re helping other people who need this type of content, or the stroke survivors, perhaps other caregivers who have just become caregivers.
Bill Gasiamis 36:40
To find it, the podcast easier and to make their stroke recovery journey a little bit better. If you haven’t left a review and like to do it, all you need to do is go to Spotify or iTunes or leave a five-star review and a few words about what the show means to you. If you’re watching on YouTube, comment below the video lately, the comments have been amazing. And I’ve been noticing more and more people leaving comments, I respond to all of them.
Bill Gasiamis 37:10
And I’m not at that stage where there are too many comments to respond to. So please do leave a comment, I’d love to see them. It also helps the algorithm share the video and put the video in front of other people. Because it shows that the video has been interacted with and it’s liked. And it’s a video that is worth showing to other people. So that’d be fantastic.
Bill Gasiamis 37:34
That means we’ll reach more people. If you’re a stroke survivor with a story to share about your experience. Come and join me on the show. You don’t have to plan for the interviews. They’re not scripted, all you need to do is turn up. All you need to do is be a stroke survivor, who wants to share your story in the hope that it will help somebody else who’s going through something similar.
Bill Gasiamis 37:55
So please reach out, I look forward to hearing from you. If you are a researcher who has a story you want to share about a recent study, and you want to let us know about your findings. please do reach out and let me know if you’re looking to recruit people into your studies.
Bill Gasiamis 38:14
Reach out, let me know come on the show. Let’s talk about your study. And let’s talk about what you’re hoping to achieve and who you’re hoping to help. I would love to have you on the show and support you and create some work that has been perhaps needed in this space.
Support the Recovery After Stroke Podcast
Bill Gasiamis 38:32
If you have a commercial product that you would like to promote that is related to supporting stroke survivors. There’s also a path for you to join me on a sponsored episode of the show sponsored episode of the show. Important, this show is funded completely by me.
Bill Gasiamis 38:49
And as a result of that any support that I can get to raise some money to pay for some of the bills that this show has would be fantastic. That means I’ll be able to cover the costs, do it for longer, and have amazing content go out to all the people who need it.
Bill Gasiamis 39:11
Go to recoveryafterstroke.com/contact If you’re any one of those people fill out the contact form explaining briefly which category you belong to. I will respond with more details of how we can connect via Zoom. Thanks once again for being here and listening. I appreciate you see you on the next episode.
Intro 39:31
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The 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.
Intro 39:48
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on personal experience. Have Bill Gasiamis The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 40:10
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 40:25
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 40:50
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post From 3 Strokes To Author – Keith Rush appeared first on Recovery After Stroke.
44 min