Francisca Wilson had just arrived at the hotel in Nepal for the trip of a lifetime when she experienced an ischemic stroke that left her with Global Broca’s Aphasia
05:46 Francisca Wilson’s Stroke Symptoms
07:48 Global Broca’s Aphasia
12:36 Peaceful In Stroke
22:16 Clot In The Carotid Artery
25:35 The Signs Of Aphasia
29:35 Post-Stroke Fatigue
45:20 Putting Pressure On Yourself
54:12 Fatigue And Recovery Time Management
1:00:09 Knowing Your Limits
Having a stroke I was just really, really, really fatigued all the time, like from my day starts with, you know, caught up, have breakfast, went to bed, have my speech therapy, listen, went back to bed, had lunch, went back to bed, had dinner went to bed. So having that one hour speech therapy was very, very, very draining because my brain was really quite fragile. And putting that energy into speech therapy that that’s all I had.
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:53
Hello and welcome to recovery after stroke a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after stroke and build a stronger future.
Bill Gasiamis 1:05
I’m your host three-time stroke survivor Bill Gasiamis. After my own life was turned upside down, and I went from being an active father to being stuck in hospital I knew if I wanted to get the life back that I loved before my recovery was up to me.
Bill Gasiamis 1:22
After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.
Bill Gasiamis 1:39
If you enjoy this episode and want more resources, accessible training, and hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers, this is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence.
Bill Gasiamis 1:59
Head to recoveryafterstroke.com to find out more after this episode.
Introduction – Global Broca’s Aphasia
Bill Gasiamis 2:04
This is Episode 165. And my guest today is Francisca Wilson, who experienced an ischemic stroke on day one of her arrival to the trip of a lifetime in Nepal five years ago. Five years on, Fran is continuing to recover while managing Global Broca’s Aphasia. Fran Wilson, welcome to the podcast.
Thank you, Bill. Thank you for having me.
Bill Gasiamis 2:33
My pleasure. Thank you for being here. Tell me a little bit about what happened to you.
Stroke changed my world upside down. October 2016, I had a stroke in Nepal. Going down just before I turned 50 so I was 49 years old. And we were going to be trekking at Annapurna, and trekking. But the holiday didn’t kind of work out like that. So we went to the airport at Kathmandu and then we went to the hotel and about 45 minutes after that I had a stroke. Yes, so the holiday didn’t kind of work out as I expected.
Bill Gasiamis 3:27
So you were already in Nepal and did something change with your trip or were you just heading to the trekking expedition. What happened?
So we were going holidays. We’re going to be trekking and we’re going to be volunteering the school for Kathmandu so the holiday was shortened for about 45 minutes. So we went from Perth to Katmandu and then things went pear shaped.
So yeah, I went to the hotel and after that I was slumped next to the bed and my partner at that point he saw the signs that I’d had a stroke so in Katmandu, it’s very different over there with the whole system for having the different language as well. So it kinda started my holiday or hospitalization was very, very different.
Bill Gasiamis 4:48
Did you have any signs or symptoms that something was going wrong before you left Australia to go on this trip?
No, I was actually quite healthy. We’re doing lots of walking for a trip. I think the only thing there is probably one thing that is really quite bizarre like when we went to the departure lounge in Perth.
It felt like there was really two hollows around my clavicle it felt like really hollow and I said I said, you know, this is really weird, you just don’t, you know, cancel your holiday because you felt a bit weird. So we just went in, and then the stroke happened. So if it’s a sign, I’m just not sure.
Bill Gasiamis 5:38
So when you say the stroke happened, what happened exactly? What did you notice?
Francisca Wilson’s Stroke Symptoms
For me, I was looking at my phone, and I didn’t know how to use my phone. So that’s probably one of the signs. Next moment, I was slumped next to page I was like spaghetti, I couldn’t move, I couldn’t talk, in a weird way, I could still understand what was happening.
I heard partner just shouting we need help, we need help. I was very aware. They got another guy and they took me down the stairwells into the foyer. And that’s when it went pear shaped. So they put me in the car. And then after that, I was conscious for about 12 hours after that. So that 12 hours, I had no idea what happened.
Bill Gasiamis 6:48
Just completely gone. Where were you when you came back, when you were awake again were you in a in a in a Nepal hospital?
Yes. So before I was very, very aware of what was going on. With that 12 hours, I had no idea what happened. Obviously, there was so many tests that were happening, I had to get CTs, MRIs all that sort of stuff, which I had no idea about.
And when I came through. I saw a doctor and I kind of knew I was in a hospital, but it’s very different to Perth. I didn’t know why I was in the hospital, I didn’t actually realize that I had a stroke. I just didn’t know what was happening.
Global Broca’s Aphasia
Fortunately, my partner came in a bit later, and the doctor came in and they told me that I had a stroke, with me the doctors were trying to see what was happening I’ve been diagnosed with Global Broca’s Aphasia. So that impacts your communication language center of your brain.
So the doctor, he was trying to see how it’s going, he showed me three items, a pen, a tie, and a watch. And he showed me these items. And he asked me what are they? And I looked at the doctor very blankly. I had no idea what they were. Didn’t learn how to spell it. So those three items were the start of my recovery of Broca’s Aphasia and having a stroke in Nepal.
Bill Gasiamis 8:50
So do you know what kind of a stroke it was?
At that point, we diagnosed with a clot. So I had a clot buster to remove the clot. So yeah, so it was the left sided stroke. It didn’t actually impacted my spasticity or anything like that. It’s just the brain injury. There’s no physical deficit. So I was having a stroke. So it’s left sided stroke, and it was a clot.
Bill Gasiamis 9:31
Okay. So, how long ago was that did you say?
That was nearly five years ago.
Bill Gasiamis 9:41
How much longer did you stay in Nepal?
So in Nepal, I was in hospital for about eight days. And then I had another six days in the hotel, waiting to get fit to fly home. So during that time, I’m in hospital, it was very surreal. But fortunately with the trip I had travel insurance. So if I didn’t have that I would’ve been in a very different situation.
In the hospital, they have like guards at the door. I couldn’t actually go out from the hospital without having my PTs on. Each time we go out there, it’s almost like these really guns, you know, rifles and things like that. So each time I went out there, I’m having all these guides, I wasn’t allowed out.
Bill Gasiamis 10:53
That’s because you’re a stroke survivor or patient. Is there some other thing that happens in Nepal where people are guarding the place with guns?
Yeah, I think the reason is that I think at that point, like it was a I’m not sure it might be the cost of it as well, if I did it a runner who’s gonna pay for that part of the hospital visit. So at that point, it hadn’t been paid.
So yeah, it’s you know, it’s just before I was leaving, they had one of the accountant or whatever he was taking, he came in and making sure that we had insurance and stuff like that. And we weren’t able to leave until that part of the exercise has been covered.
Bill Gasiamis 11:50
Do you know what’s going on though? You’ve had a stroke, you’ve just woken up. And I imagine you’re not doing very well at this moment. Do you know what’s happening with all of that stuff? Or is it are you lucky that somebody else is dealing with all of that?
Yeah, my partner’s doing all that sort of stuff. So yeah, it’s quite weird. I could understand what was happening, but I couldn’t verbalize it. And with the Broca’s Aphasia, so my partner was actually going into all that part of the exercise.
Peaceful In Stroke – Francisca Wilson
That part of it is really weird having my strike, I felt so peaceful. It’s almost like it was very, very surreal. Like I knew what was happening, but it didn’t really impact me, but it just, I wasn’t really there. So it was happening, my stroke and all that was happening it wasn’t really affecting me at that point.
I’m trying to explain it but yeah, I just felt so peaceful about it all it was just like, your life is good, and you know, when you have a brain injury, you’re just really focusing on that moment. And I think having that stroke was just been at the moment, which was, you know, it was very, very, very surreal felt like unreal.
Bill Gasiamis 13:35
So then I imagine you didn’t know how serious the situation was because a clot, yes, you had the club buster, it did help the situation, but you obviously had been impacted in the brain. And you had some issues immediately. Were you aware of how serious the situation was? Or was it just let’s go on this trek.
No, no, I had no idea. I just thought everything would be fine. And I think Brad my partner he said to me everything will be fine so I just trust him that everything will be fine. And that’s all I had, you know, I didn’t actually think about the long term of having a stroke. I had to do some speech therapy when I was in hospital as well. And you know, I had to try and write my name I didn’t know how to write my name.
You know, we’re given all these fruit you know, can you tell me some different fruits? I had nothing left. I didn’t know any, you know, and just try to see what I actually have lost. Doing these little items in the room, I didn’t know what they were, let alone write them. And food is the other thing they did they say so you know what food is that? I said I have no idea. So you know, they’re trying to say what fruit I had nothing, there’s just nothing. I didn’t know.
Bill Gasiamis 15:02
So this is in Nepal. And then after the hospital, did you immediately leave Nepal and come back home?
No, my sister, she was able to come for me in Nepal as well so there were three of us. So I had to get a fit to fly to come home. So we had to wait quite a bit. So I was in hospital for about eight days and about six days in the hotel. And then I had to go see the what’s it called the registrar at the hospital and I had to do a few tests with him to make sure that I was able to fit to fly.
Fortunately, I was able to come home, which is good, coming back home, there was so many dramas with the health system in Nepal, I had to have injections so that my blood is quite thin.
And with drugs, you have a like a brand, and maybe about four or five different brands for the same drug. The doctors perscribed a particular drug brand, but none of the pharmacies didn’t actually recognize the drug.
So they wouldn’t give it to me so we went to about six pharmacies to get the drug that I needed to actually to come home. So that was just before we were flying out. So we’re ready to go we just had to get this drug. It was just crazy. I saw the doctor before I left he show me all of the items to see if I’d actually learned something, you know I mentioned before about the pen, tie and watch.
So as soon as I went to the registrar, I think it starts with a C, the consultant that’s it. Yeah. I went in there I said to him, that’s a pen, that’s a tie, that’s a watch and I told him, you know, how to spell them.
And then he showed me another item, he goes, what’s this? And I looked at him really blankly it was a phone, I didn’t know what a phone was. So I felt like ripped off on that one I think.
Bill Gasiamis 17:33
Yes. So fit to fly home, which is good, has a very different stance, I shouldn’t have been flying.
Bill Gasiamis 17:43
Wow. So you know how right now you can tell me that he showed you a phone and you didn’t know what the phone was then? Are you telling me the story of somebody else telling you that you didn’t recognize a phone? How did you recall that whole conversation with them?
It’s really interesting. Like, when I was conscious in Nepal, even before I had the stroke, or when I’ve had this stroke, everything was so vivid I could actually go into the hotel and tell you exactly what it looked like, even when I come through with the hospital is very, very vivid, like my memory on that part was just really, really clear in the clarity of it.
And it’s kind of weird, because I’ve lost so many, you know, part of my brain, the Broca’s area, like that so gone, but all my memory with that stuff is just, it’s so vivid now, even now. It’s just I can see the fear. I can see it.
Bill Gasiamis 18:48
Right. So you had this awareness issue with something did drop off. You didn’t know what a phone was, you couldn’t recognize it. But you can recognize and remember the whole entire interaction with this person at that time.
Yeah, yep, definitely. It’s just really surreal. It’s just I don’t understand why. But I think that’s part of the brain that was, you know, that part of the brain was still functioning? I think.
Bill Gasiamis 19:21
So you eventually got home? You got fit to fly, you got home. Now, when somebody has a stroke, normally, whether they’re in their home country, whether it’s Australia, wherever they are, in the US or in the United Kingdom, they usually have a whole bunch of things that they have to do.
Bill Gasiamis 19:40
Go back to the hospital, for follow ups and for tests and for all those type of things. You had a stroke in Nepal. They gave you the clot buster, you came home. How did that experience continue? Once you got to Perth? Did you follow up with them and explain to them that this is what happened when I was in Nepal. How did that go?
Yeah, that actually did happen. We went first class with a travel insurance. My partner is a nurse. So I had to have a nurse with me as well, because he was a nurse he was able to come with me to give additional help. If he wasn’t a nurse, I would have to transfer with another nurse to actually take me back to Japan.
So we came home on my 50th birthday. So best president ever. At that point, we would have been at the Annapurna trek so yeah. So that was kind of what that was. And then on the Monday after I came back, I think he came home on a saturday, on Monday, we went to ED Charles Gairdner Hospital.
I was in the hospital that day for about 16 hours. They do all these different tests and like just to see that the impacts of the stroke you know, I can’t remember what sort of tests but it was like there was a CT and MRI.
And that was the start of the tests session you have a stroke, they have to check everything. But that was all part of it. I was able to come home that afternoon. And they wanted me to come back and do another test called a Doppler. So that’s like an ultrasound.
So that was organized on that was on the Monday on Friday I had a Doppler. My sister and one of my friends and my partner Brad, we went to have looked at this ultrasound. So when you get an ultrasound, they just do ultrasound and they go Yep, you’re all good, we’ll see you, all is fine.
Francisca Wilson Had A Clot In The Carotid Artery
They did the ultrasound and one of my friends she actually saw the Doppler. So it’s the carotid artery to check that there’s no brakes or clots and things like that. Was there for about an hour and a half waiting, waiting, waiting. You can’t go You can’t go yet. What they found is a massive clot in my carotid artery.
So what they believe is when I had the stroke in Nepal, part of the clot was dislodge into my brain which is why I had the stroke and they found massive clots. So at that point, I wasn’t going anywhere. So I was admitted into hospital and I had surgery the Monday to have that clot removed. So flying with a massive of cloth is probably not the best idea.
Bill Gasiamis 23:12
So you had some luck on your side with a clot in your artery. You’ve come home. Thankfully, the clot didn’t move further or dislodge any more parts of it. And now, what do they do now? What’s the process to treat that how do they go forward from there?
Thrombosis it think but it they actually had to remove the clot.
Bill Gasiamis 23:44
Yeah, a thrombectomy I think it’s called.
Okay, yep, something like that.
Bill Gasiamis 23:50
I might be wrong.
They had to have that removed. So actually it goes through your groin, and then it goes up and essentially goes up through your vessels up to here, and then they actually remove the clot and then have a stent to I think to make sure that the vessels aren’t going to explode.
So that was really quiet. That was quite were challenging and having a stroke in Nepal, believe it or not. When I went into recovery, my blood pressure went down. So I had the head of mission at MIT. And then recovery. I think about two seconds is about 50 people just on top of me getting all these drugs to get my blood pressure back up. So yeah, that was the start of recovery having broken faith. Yeah.
Bill Gasiamis 24:53
Did you feel that it was a very difficult time going through that procedure? Or are you just running Selecting order now thinking that it was harder than the original situation, which was a small clump breaking off and going into the brain.
Yeah, I think at that point, I kinda knew that I’ve got a lot of work to go. I think it’s a realization like at that point, my speaking and things like that was really quite hit and miss, I thought I was doing really, really well to communicate and things like that, but apparently it was’nt really that good.
The Signs Of Aphasia
I still remember in the hospital, I was looking at lying on the bed, but I didn’t know where the bed was, I was looking at the toilet in the bathroom, I didn’t know where the bathroom or toilet was. I was trying to remember just what are they? What are they? What’s a towel? You know, what’s pajamas, all that sort of stuff.
So before I had the surgery, that weekend I was just, you know, looking at all these items, trying to remember them all. And that was really challenging. And I think at that point, that’s when I knew that I have quite a lot of work to go to get to where I want to be.
Bill Gasiamis 26:22
You know that it’s a toilet, you know that it’s a towel. You just don’t know what they do what the point of it is, or what their use is, is that what it was? Or didn’t you even know what they were?
No, it’s the opposite. I knew how to use them. I didn’t know what they were. Okay, I think we’ve lost the connection. Bill. I like kind of that. Yep. You just dumped you. So here is just Yes. So I didn’t know how I didn’t know what they were. And I didn’t know how to spell them. But I knew how to use them.
Bill Gasiamis 27:02
Yeah, that’s fascinating.
Yeah, I think at that point, I think that’s when there was a realization of what’s actually happened to me.
Bill Gasiamis 27:16
Before stroke before that holiday planned holiday that you went to, what did Fran do for a living?
I’ve worked with oil and gas 30 years. So working I did so many different roles during that time, but the end of it was working with business simplification, processes and procedures.
So I was doing that, which was, you know, at that point, I was only working three days a week, which was, you know, decided to reduce my hours. Yeah, and that kind of turned upside down after the stroke.
So it’s a 30 years working, you know, with a good income and things like that, having the stroke, I wasn’t able to work. So it’s been a massive impact from, you know, the income stream and things like that.
Bill Gasiamis 28:23
So you’ve come home, you’re in hospital, they did the procedure to remove the blood vessel where your employer’s aware of your situation immediately. Why did that happen a little while later?
Yeah, at that point, I wasn’t actually working. I’ve got redundancy in August 2016. So at that point, it didn’t really impact my job at that point. So yeah, at that point I kind of thought, like, I had a redundancy. And after I came back from Nepal, I was actually going to go back into the workforce. But of course, it didn’t happen.
Bill Gasiamis 29:14
It didn’t pan out that way. So now you’re at home, and you’ve got a lot of time to contemplate what’s going on. What are you focusing on? How are you trying to move your recovery forward so you can get back to something that resembled life before stroke?
I think still now that’s five years down the track. I still have like deficits with my stroke as well. After the stroke, I was able to have six weeks of intense speech therapy, having a stroke I was just really, really, really fatigued all the time.
Like my day starts with, you know, got up, have breakfast, went to bed, have my speech therapy, listen, went back to bed, had lunch, went back to bed, had dinner, went back to bed. So having that one hour speech therapy was very, very, very draining.
Because my brain was really quite fragile. Putting that energy into speech therapy, that’s all I had. So you know, one hour, of course, I was actually doing you know, a few little jobs at home, things like that, like cooking I was still able to cook, which was good when you had to cook, which is good.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
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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.
Six weeks was really, really challenging. And at that point, you kind of realize how I’m really fortunate, like Broca’s Aphasia, I think there’s so many different levels of Broca’s Aphasia. I was able to communicate, which was good. Lots of people can’t with Broca’s Aphasia, and I was able to communicate in a weird way.
You know, like, I need to get all the help to having a conversation. You know, I want to say something I just don’t know how to. So it’s all those conversations, this is what I wanna say, I knew what I wanted to say, but I didn’t know the words, tell what I felt about or what was happening with the situation.
Bill Gasiamis 32:36
So you’re in a difficult situation, maybe you’re getting emotionally upset, or you’re getting frustrated with something. Right at that moment. You knew what you wanted to say. But you couldn’t say it. Could you tell the other person? I want to say something to you, but I don’t know how to say it. Is that what was happening?
Yeah, yeah, definitely.
Bill Gasiamis 33:00
Okay, so you could tell them that you didn’t know how to complete the sentence that you’re trying to make in your head? You can tell them that perfectly well, but you can’t tell the sentence that you actually want to tell?
That’s exactly right. Like as I mentioned before about, you know, you know what a towel and things like that. I got an app. And it’s going back to, at that point, I didn’t know how to read and write as well. So I had this app and had all the animals and snake and how do you how do you pronounce it?
So I was looking at this snake couldn’t know what the snake was, I had to learn all that sort of stuff. I think my recovery was really quite exponential initially. So I was just learning so many stuff, we go for walks, and I said to Brad, what’s that? What’s that? Oh that’s a curb that a light, that’s grass.
So that’s how basic I had to start learning to relearn objects around the world. On top of that, I had to learn how to put sentence together, which is really quite challenging. With Broca’s Aphasia. If I wanted to say I went to the beach, if I wrote it went I want the beach so what you want to say it comes out very differently on paper when I was able to start writing.
Bill Gasiamis 34:37
So, you know, in that moment when you don’t know what the light is, or the Kirby’s or the grass, so you learned that when you were a baby, right when you’re a kid and as you became a toddler and all that, you learned that, was it completely gone from your mind and is it accurate for me when I say that you have learned that again, from scratch, like that entire thing, this is a book, this is a towel, this is a thing, and that’s a fresh memory from five years ago. Is that accurate?
I’m not sure how it works, I think it’s a combination of things like, yeah, I think like, it’s almost like a detour and like the Broca’s Aphasia you like my memory that’s gone. So you have to go to a different part of your brain to get that that word, and then retain it as well.
So I think that’s why you get cognitive fatigue because your brain has to go a different, a long, long, long way to get to where you get the information. With the stroke too, I had like, all the items I lost, you know, the lyrics of songs, that’s all gone.
And all the rhymes, you know, a bird in the hand is worth two in the bush, that was all gone as well. But my memory of like holidays and things like that before having the stroke, that was also vivid only part of it. And I lost all that. So it’s really quite weird for me kind of think, oh, that’s weird.
Bill Gasiamis 36:28
I love when you explained about the memory of going to a different route. It’s the classic example of neuroplasticity is and it’s going to an old part of your memory from a different direction. And it’s using the event that’s happening right now, which is the the grass, what is that? That’s grass, somebody’s telling you that that grass is rerouting.
Bill Gasiamis 36:55
And it’s going to this other place where you had something, a memory of something that was grass before and it’s reconnecting both of them?
Repetition – Francisca Wilson
Yeah, it feels like that.
Bill Gasiamis 37:07
You know, when you re-learned what grass was, did that stay with you for a while? Or were you forgetting that often?
No it’s all about repetition. So I just said that’s grass and that was it. With the pen, tie, watch. It took me 10 days to remember those three items. So yeah, so repetitive all the time. Like that’s a pen, that’s a pen, that’s a pen. And an hour later, what is it again? Ah yeah, that’s a pen, that’s a pen. So it’s just repetition, over and over and over and over again?
Bill Gasiamis 37:49
How much of a strain does that place on your relationships with your partner? And also with the people around you? Did people understand that? Are they not dealing with that well?
Initially, it was really quite challenging for everybody. You know, having that conversation, I’d have a conversation, how do I say that? How do I say that. And you know, like, I want to save this but I don’t know how. So it becomes very wearing stuff like that.
The frustration from me as well, like, I can’t get this sentence together. But what I want to say, and then try to communicate that with your partner that’s another issue as well because I’m getting frustrated with myself. And then I get frustrated because I can’t, you know, communicate what I should be.
And it’s really quite challenging. I think part of that is actually dependent to have people around to communicate. So I was independent at that point. It’s really interesting. I think I’ve mentioned before I was working with oil and gas I’m you know, like I did lots of it with Excel spreadsheets and things like that.
I knew how to use them but I didn’t know, you know, the icons and things like that. I could use that. But I just didn’t know the icons what they were but I could use an Excel spreadsheet.
Also with having the stroke all my PIN numbers and stuff like that, I remembered all that as well. Like so the mathematics side wasn’t impacted but the verbal words were impacted. So yeah, just crazy.
Bill Gasiamis 39:51
So you’re somebody that’s quite competent. You know, you’re 30 years in a particular industry. You’re at the high level of performance as far as using your brain and your mouth, and most of us are, regardless of whether we’ve been in industry for 30 years, or whatever.
Bill Gasiamis 40:06
But what I’m trying to say is, there was no doubt about how you did things, you knew how to do things, it was not a difficult thing for you to sit and navigate a computer previously, and how to have a conversation. Now you’re sitting at a computer. Did you have any ability to type an email, for example? Was that something that was possible?
At that point, no, I couldn’t read and write, so doing an email no, initially like I think it was about eight weeks, during my six weeks of speech therapy I was able to put a sentence together. It’s quite interesting, like with speech therapy I had, they showed me magazines, and I had to look at the cover because I couldn’t actually read and explain what was happening with the words.
And my first sentence was Nicole Kidman, and Keith Urban so they’re in the cover. And my first sentence was, Nicole is annoyed at Keith. But I didn’t know how to pronounce I didn’t actually know how to write a annoyed. So that was my first sentence. And as you mentioned, having an email that wasn’t gonna happen.
Bill Gasiamis 41:35
So what you need to do? Did you send a message recently to Keith Urban and to Nicole Kidman, and let them know how important they were in your ability to learn how to speak again?
Maybe I should call them. I’ve got a like a notebook. And I’ve read all the progress of my recovery. So I’ve still got the notebooks and I could see how far from where I started to where I am now. So at that point, emails were just not going to happen.
Bill Gasiamis 42:14
You know, how important was it reflecting back and seeing how far you’d come? Because I feel like that really supports recovery. Did it help you?
Oh, yeah, yeah, definitely. So with doing my notes and things like that. I think for me, like, I was almost a perfectionist. So I wanted to for me, I wanted to get quick. I wanted to get better quickly. So I was doing lots of worksheets as well. I had the speech therapist, and I had a tutor as well on top of it to enhance my recovery. I can’t remember what I was gonna say.
Bill Gasiamis 43:06
That’s alright, what I was asking was about comparisons so how far you’ve come?
Yeah, yeah, I’ve done really well. I think after about a year after that, I felt pretty good with it, you know, I still have issues with reading and writing and getting words, I get words mixed up. But it doesn’t really matter, in the whole scheme of things. I can send emails and things like that. So it’s good. A year when I was able felt confident to actually send an email without getting edited with someone else.
Bill Gasiamis 43:49
Right? In that 12 months are you focusing on being able to recover your speech and your ability to communicate all the time? Or is there weeks and days where you said stuff that I’m not doing this anymore? Or like how do you navigate that time?
Some days, I just had to go with the flow. And I think I’m really quite fortunate. I had friends and family that would understand and helped me to communicate with things like that. But that year, was I just wanted to get better quickly, which I wouldn’t recommend that either.
Bill Gasiamis 44:38
Why wouldn’t you recommend that? Is that because you had timelines did you have a timeline and then you didn’t meet it and then you felt bad? What was the issue?
I think my personality I just wanted to get as far as I can quickly and that was a detriment on my mental health as well, having that you know, I could do this before now I can’t do it now and I just want to get back to that point and yeah, going through so many worksheets and things like that to actually get my recovery back on track.
Putting Pressure On Yourself
Bill Gasiamis 45:20
So you’re sometimes your own worst enemy by putting too much pressure on yourself and then causing maybe causing days where you weren’t getting a lot of results and then you’re focusing on the fact that you didn’t get a lot of results and then it kind of created a bit of a negative loop by the sound of things.
Yeah, yeah, I think it was the time at some point where I just actually realized that you know what, it’s just a matter you know, it’s a recovery it’s a long term recovery, it’s not going to happen overnight. And I had that that epiphany like, oh it’s actually okay, I’m okay where I’m at at the moment.
And you know, I’ve done really really well considering where I was, you know, with you know, pen, tie, watch. Also I had like speech therapy one on one and I also teach group speech therapy as well. And doing that was kind of like, you know, what I’ve done really, really well because we’ve had people in the room with Broca’s Aphasia.
And as I mentioned before, there’s so many different levels of disabilities with Broca’s Aphasia, and doing that group session I kind of thought you know what I’ve done really well yeah, and you know, it’s actually quite interesting like we’re supporting each other with their journey with Broca’s Aphasia.
Bill Gasiamis 46:45
You have a lot in common with those people that you previously didn’t have anything in common with and you never would have met if it wasn’t for the stroke you still keep in touch with some of those people?
No I don’t, there’s one lady that I did that initially but we’ve lost touch.
Bill Gasiamis 47:09
You and I met around two years ago you came and had a bit of a trip into Melbourne and we went out and we had dinner at one of the local Indian restaurants I think and I think that sounds like it was around three years after the stroke incident. I never would have picked up that you had Broca’s aphasia.
Bill Gasiamis 47:34
I in fact, am learning this about you right now. So you had progressed quite a lot by the three year mark as far as I was concerned anyway because of somebody you know who never really knew you Are you very different now to what you were before the stroke because I’ve never met you before that do you see a difference between you now compared to you then?
I think people in my purple circle group they notice a difference as well but people just like acquaintances and things like that I don’t think that they don’t see the differences they don’t see the difference. Yeah. So it depends on how you know how you have the relationship so it can be very different
I think for me I’m a lot more relaxed. So kind of goes with the flow and things like that so yeah, I think I see the difference in myself as well. And I think it’s almost like a invisible disability. So you portray I’ve got it altogether and things like that. Because you know, when you’re sick you just get your best ace so people see how am I gonna say this is Broca’s Aphasia. I know what I want to say but I don’t know how to.
Bill Gasiamis 49:20
I’m patient Just take your time.
When you when I go out, you know, have makeup on and I do it when I’m actually not tired. So if I’m really fatigued or tired, having a communication, it’s just not going to go anywhere. I just get frustrated. So you do those conversations when you’re feeling good about it or you’re not tired and things like that.
So as I was saying behind the mask what’s happening now my brain is just going really quite crazy trying to communicate what is happening, kind of going, you know, before I had the stroke it used to be really easy to communicate no it’s not and it’s just trying to trying to say what I want to say it’s just not gonna happen.
Bill Gasiamis 50:06
So what you’re doing, tell me if this is accurate. So what you’re doing to yourself is, you’re trying to have a conversation, you’re not having a good time because you’re tired, you’re not having a good time getting the words out, then you’re struggling to focus on getting the words out, but at the same time, you’re beating yourself up about it. And you’re saying, Why can’t you get the words out, and you’re getting frustrated? And at the same time, you’re still trying to make the sentences that you want to get out?
Yep. Because it could have been easy, and it’s not but and I think in that one, I’m learning, it’s actually okay, if I can’t get a sentence together to what I want to say it’s not going to change your world. So yes, so you have to be kind on yourself as well. It is what it is.
Bill Gasiamis 51:02
So you’re five years out, and you’re still noticing that when you get tired, the aphasia kicks in a little bit and makes things harder?
Yeah, definitely, definitely. Yeah it’s almost like when you’re drunk, I think you can’t get a sentence together. And you think you’re doing really, really well.
Bill Gasiamis 51:23
I know exactly what you mean about feeling like you’re drunk when you’re not actually drunk. That’s me a lot of the time. But it’s mostly, if I’ve had a bad night’s sleep, the next day can be a really challenging day. And if I have too bad night’s sleep in a row, the third day is a really hard day, I can’t get much done at all.
Bill Gasiamis 51:45
And doesn’t matter what I’ve promised and who I’ve told, I’m going to do something, it just doesn’t happen. And I’ve got to apologize for it or just, you know, just move on from it. It’s just one of those things. People that don’t know me don’t understand.
Bill Gasiamis 52:01
So that’s a bit of a challenge, because then I’ve got to explain myself to people, and I don’t really enjoy explaining myself all the time. But yeah, but that doesn’t happen. So often. How long? How long does it take for you to get tired now? Do you find yourself being able to get through a full day most of the times, or is it very different does it chop and change?
It’s all out of the shop? After this stroke, I’ve decided I was going to do volunteer with the stroke foundation. So I do, I think you’ve done that before Bill the. Stroke speaker as an ambassador to her presentation yesterday. So after that I had to go I was only there for about an hour and a bit.
When I got home, I had to go home internet poker is I was just naked because of that one hour just communicating as well. So other days, I could go, you know, for two or three hours, it’d be fine. So yeah. It really depends on the day. So you kind of you think this was it, Robin reasons. Also with me having a stroke. If I’m doing that, like initially, that two months after stroke, I started working with aged care, does working three mornings a week, and that was way too hard.
So I was only working about 12 hours a week. And that was the limit that I could actually work. And that’s been really, you know, as I’ve mentioned before like prior to the stroke, I could work full time and now I can’t, I’m only working 12 hours a week.
And that was too hard as well. Because you have to kind of balance the fatigue and the stroke and Broca’s Aphasia. And it’s really, really hard trying to get that balance. It’s really, really hard.
Fatigue And Recovery Time Management
Bill Gasiamis 54:12
Yeah, I found that I’m nearly 10 years into my stroke journey. And the hardest part of it sort of started I think it started after the second bleed. It’s when I lost the majority of my function. It’s when I couldn’t recognize myself or my wife for I didn’t know where I was or what I was doing, I didn’t know how to type in email.
Bill Gasiamis 54:37
And all those things have come back. I do know how to do all those things. It’s all okay. But the fatigue, it still catches up with me even though I might have two or three really amazing days. It’s kind of like, oh, I’ve had really two really good days, man there’s a third day is going to be a bit of a down day.
Bill Gasiamis 55:03
So I’ve got a plan for that. Bosses probably don’t really know or understand that. And they really don’t care whether your third day is going to be a bad day. They just want you to be up and about all the time. Has that struggle that you have got in the way of you staying even employed part time in another industry for example?
Um, yeah, it’s been really been really, really hard. Like, I’m, like going into the corporate richer, being a carer that was a big issue as well, you know, and obviously, income as well, when it comes to that. Here, it’s just, yeah, I seem really, really, really challenging.
Bill Gasiamis 55:59
Yeah. What other support? Are you getting a? Right now it’s been five years, and I imagined the speech therapy and all those other therapies have kind of stopped happening. Are you getting any other support right now for any other things that you’re going through?
Um, no, no, nothing. Initially when I had speak therapy, I went to a company called read right now. And I had a tutor, I came engaged, go back with them at this point, but last year, I go quite sick. So I had to really put that in the background and just focus on mental health, physical health, and things like that. So yeah, I had to change that.
Bill Gasiamis 56:56
Mental health challenges are a really big issue with regards to stroke, and causes, like this ongoing second recovery that needs to happen at the same time? Did you know that you had mental health challenges? Or did they kind of catch you off guard?
It was almost like, I could see it, what’s gonna happen? Close, it’s a much more fragile, working three mornings a week, and I was just tired, 24 seven. And I just kept on going and going and going. But if you failed to do too much, you did too much, which is public, right? And because I did too much, I didn’t actually really focused on the mental health issues as well.
So I could see my mental health is going down. So I could see what’s happening, but it’s almost like going down a spiral. And you it’s going to happen to you, it’s going to happen and down the track. That actually happened. I did you know, like mental health breakdown issues was about this time last year.
And I think that was because I was drinking way too much. And, in hindsight, it’s like go with your gut like, I knew that I was working too much, but I just kept on going doing it anyway. And I knew that that wasn’t gonna be healthy for me, but I did it anyway. So I didn’t really listen to my gut. Go with the flow yeah.
Bill Gasiamis 58:35
Interesting. So you’ve learned something from that. And do you think what you’ve learned is going to help you not fall into the same trap down the road?
Yeah, yeah, I just you know, it was really quite horrible. It was a was a really horrible part of my journey. I’m very aware that it’s really quite fragile now. But now, I’m actually putting my mental heal my priority. So my health is my priority. So it’s all about me at the moment. So yeah, so between the things that are like, going to the beach, watching sunsets, catch up with the friends I’ve started warking a little bit with a support care, but I’m actually not going to do too much of that, either.
Bill Gasiamis 59:52
So you started working as a support carer?
Yeah, yeah. Yep. Somebody doing a few hours. during the week, if it gets too hard, I just sleep.
Knowing Your Limits
Bill Gasiamis 1:00:09
I suppose there’s really strange thing about this whole situation is the only way you were going to know, if we are doing too much is to do too much. I mean, it’s the only way we’re gonna get there, it’s not a great thing to find yourself in that really difficult time.
Bill Gasiamis 1:00:30
But that’s the only way we’re going to really know what we can and can’t do, we have to test the boundaries and see how far we come. And then pull back and hopefully learn from there and not make the same mistake again in the future, you know, so you’re doing really well to navigate this journey, go through the tough times, and then reassess, and take a different path going forward.
Bill Gasiamis 1:01:01
I think that’s the only way to do it, I found myself in similar situations where I would do too much, and then really crash for a couple of days and regret the decision that I made before that to overdo things. But then, on reflecting on it again, a little bit further down the track, it was like, Okay, I had to do that I had to know where my limits were.
Bill Gasiamis 1:01:24
And now when I, when I found myself needed to achieve something or do something quite challenging, I would take a different approach, a more gentle approach, one that wasn’t going to wipe me out for two days. One that was going to perhaps, you know, require me to recover for half a day or Yeah, or you know, three quarters of a day instead of two entire days where I was totally unproductive and couldn’t be around anybody.
I’m more than happy to cancel events. And lots of people will understand as well. So I’m like, you know, and obviously you still got that same fatigue thing as well, don’t you?
Bill Gasiamis 1:02:14
Yeah it’s not so bad on a daily basis, if I get really good amount of sleep, it’s good. So if I go to bed, and give myself at least seven and a half or eight hours of sleep, I’m usually quite good most days. But I have this weird time in around three or four o’clock where I need to just wind down for a little bit. And then I kind of get a bit of a second burst of energy.
Bill Gasiamis 1:02:39
And that gets me through to the end of the day. And if I find myself pushing through that four o’clock, kind of fatigue time, I don’t know what else to call it. If I push through that, then I get wiped out at the end of the day, and I’m completely useless after about eight o’clock.
Bill Gasiamis 1:03:01
So I don’t want to do that I want to pay attention to my body honor, what it’s requesting of me. Give it some time to recover when it needs to recover. Yeah, I don’t do midday cat naps or anything like that anymore.
Bill Gasiamis 1:03:18
But at the beginning, I used to do a lot of extra sleeping and just to excuse myself from places and go home early or just do whatever I needed to do to get me through. Because it’s not the same as it used to be. It’s never gonna be.
Yeah, you know, I think in the scheme of things like having the stroke, you know, I would rather have not had the stroke, but during it, I think I’m a much better person now before the stroke. You kind of understand yourself better. We know your limitations. A bit more compassionate, you understand a lot more about other people’s journeys and that’s been the best thing for me is just as well.
Bill Gasiamis 1:04:24
So you’ve learned quite a lot from your experience about yourself and about other people that we previously were unaware of. And I found the same thing I became way more compassionate and may way more aware of the difficulties that people face.
Bill Gasiamis 1:04:42
Because I faced them, I’m still facing them. I wasn’t. I wasn’t, I wasn’t living this version of life, which was the blessed one, the perfect one with that, thank him. I feel blessed and everything’s perfect as it is, but it’s exactly what you said like, I was able to relate to people that were doing a little bit difficult now and that made me see them in a better light in a different way.
Yeah, definitely Yeah. There’s always a silver lining with having a stroke as well I wish I didn’t have it, but I did and just got to really embrace you know, the fatigue and getting tired things like that. It’s just life and you just got to I have a blessed life. You know, and you just focus in the moment as well.
As we know, you know, life can change in an instant. And it did absolutely different, you know, the stroke survivors and anyone that had any other, you know, diseases life can change and you just got to just embrace what you have.
Bill Gasiamis 1:06:02
On that note, thank you so much for being on the podcast. I wish you well, ongoing recovery. And thanks for sharing your story.
Thanks so much for joining me on today’s recovery up the stroke podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.
This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave hospital, you no longer have medical professionals on top.
I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker inside. If this sounds like you, I’m here to tell you that you’re not alone and there’s a better way to navigate your recovery and rebuild a fulfilling life that you love. I’ve created an inclusive, supportive, accessible community called recovery after stroke.
This all in one support and resource program is designed to help you take your health into your own hands. This is your guidebook through every step in your journey from reducing fatigue, to strengthening and brain health to overcoming anxiety and more. To find out more and to join the community just head to recoveryafterstroke.com see you on the next episode.
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