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Stroke – a personal story (video transcript)

Recovering from a stroke can be both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.

Summary

The patient a 45-year-old male, had a stroke due to the dissection of his right carotid artery. This caused paralysis on the left side of his body, spasms and painful spasticity. He is currently on a range of medicines for conditions such as blood pressure, cholesterol, and depression.

Watch the related video interview >
 

Please note...

This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.

healthdirect doesn't endorse any personal opinions expressed in the video, and we recommend you discuss any questions you have regarding unfamiliar terms or descriptions, as well as how this experience compares to the Australian health care system, with a health professional.

Video transcript

His wife found it difficult to watch the sensation tests which involved pinch and pins pricks but he could not feel them.

When the stroke first happened, did you have any investigations at all and can you tell me about any of the investigations that you had?

Well, some of the things, as I say, when I first went to Casualty and this is like things that were reported to me by my wife, they did a lot, they did like a sensation map I think they called it, just to try and suss out where I had any kind of feeling and how much the stroke had taken away the feeling to my left side, so they used just, just pins basically, stabbing my body and pinch me and things just to see if I had any feeling at all down my left side. My wife said, said it was quite awful for her to watch, people pushing needles into my arm and the side of my leg and me just lying there quite happy to let it happen, didn't feel a thing. I had no sensation at all to my left side.

Had been a heavy smoker and was told this contributed to his stroke.

Obviously you're relatively young to have a stroke. What was your feelings about that?

It was just, well, it was my own fault because I used to be a smoker before I had the stroke. The doctor did say it was probably the smoking that was the main contributory factor so it was a bit of case of I wish I hadn't started but, there we go, you can't turn the clock back.

How do you feel about now that you were a smoker?

Well, I used to enjoy smoking. I knew there was risks involved. So it's not like I was completely in the dark of the risks that I was taking because I knew I was taking risks at the time it seemed like I enjoyed it, so I smoked and that was that. You just take chances, I suppose, in life.

He has pain in his shoulder because it has become partially dislocated due to the weight of his paralysed arm. He wears a special sling to support the arm.

Right. So a subluxation in the shoulder is where, it's basically where my arm's pretty much dead and it's just a dead weight and it was just hanging all the time. Almost like the joint open a bit in my shoulder that works the muscles and that or if it's a tendon, then things around the joint would pull the joint quite tight and keep your joint quite tight. The bone and socket in your shoulder, mine just sort of dangles out and they did actually show me when they examined it, that you can actually feel a gap in, in the joint. I can't actually feel it now but the physio did sort of show me where the feeling, was able to actually, so I could feel it myself, the subluxation. So I wear, sometimes wear a sling just to support my arm, just to support the weight of my arm rather than take the painkillers for that.

But it seems to mean that over time now, the range of movement in my arm, even if I just try and lift my arm up myself, I can't lift it as high as I used to be able to because the shoulder, shoulder pain is restrictive. But it's really, I think, just down to the dead weight of the arm just dangling, pulling on the, on the joint all the time.

And how do you manage with the pain?

Well, I was taking the painkillers but they used to make me a bit confused and a bit knocked off, so I, I cut those down. I used to take them 3 times a day but now I just take them at night if I'm in particular pain at the time. But otherwise I just take paracetamol which works adequately.

He hated the look of his pureed Sunday lunch and says he preferred the chocolate his wife brought in for him.

Can you explain the reason that you had to be on the liquid diet?

Well, I saw the speech and language therapist who came along, put the stethoscope on my throat and asked me to swallow and I think I had to have a drink and assess my swallow reflex and it was my swallow that wasn't very good and I think the concern was if I had any solid food that, that it might get trapped and I might choke to death. So they said, no, I had to have a liquid diet, puree diet, so that was that, so that was the reason so I had to have this puree diet. So the plate would just have different coloured splodges around the plate basically, dependent on what it was that you were eating but I think the worst was Sunday lunch where you'd have a brown dollop of sludge on your plate which was my roast lamb I found out, then a green piece, piece which was the, the cabbage or the peas and grey which seems to be the colour of potatoes in that particular hospital and I would be eating, you would expected to eat that, but I used to take the lid off, put the lid back on and say, “You can take that away, I'm not eating that”. I used to ask my wife to bring food in for me and my other visitors and they'd mostly bring chocolate bars and desserts from supermarkets.

His speech was initially very slurred due to muscle weakness. He has ongoing problems regulating the volume and speed and thinks that his singing has also been affected.

So was your, sorry, was your speech affected at all?

At first, it was. Certainly in the acute hospital, those first 3 weeks but when I got to the rehab ward, it was a bit better. But first off, it was just sort of slurry and a bit difficult to understand but after a while, it, I don't know, I'm not quite sure what, I think I just got used to how it was and adapted to the differences so then I could certainly make myself understood. So I was lucky from that point of view that I could communicate OK.

Would you say that your voice has changed at all?

Yes.

Since the stroke?

Yes, it has.

Can, can you explain that?

Well, people that know me from beforehand will say my voice, I don't sound different but certainly my concentration's not as good as it used to be. Sometimes I will just loose my way in a sentence, I'll just lose my way in a sentence and forget what I was going to say. So I don't think my conversation is as fluent as it used to be and I think sometimes I think I get a bit anxious and I try and rush what I'm saying and speak very quickly and another thing that I found is adjusting how loud, the volume of my voice. I find that difficult to do, to talk louder or quieter. It just tends to be whatever comes out is what it is. And also my singing voice has changed because before the stroke when we were growing we used to quite often go to karaoke evenings. I used to like singing in the karaoke but that's not, I'm not as good a singer any more either. I won't do a demonstration but believe me, I'm not. I think just the vocal range of my voice is much more limited than it used to be. So it has affected it.

Gave up smoking immediately after his stroke but this was easier because he had been debilitated and physically unable to smoke. Recommends others give up to help prevent a stroke.

Well, I used to enjoy smoking. I knew there was risks involved. So it's not like I was completely in the dark of the risks that I was taking because I knew I was taking risks at the time it seemed like I enjoyed it, so I smoked and that was that. You just take chances, I suppose, in life.

And how did you find having to give it up?

Well, the first 3 weeks I was basically oblivious to what was going anyway around me. Just lying on my back in bed for 3 weeks, so I didn't miss them at all then. I wasn't able to smoke then physically, so it wasn't like that I really missed the thought of it or anything, it just wasn't a possibility. It was quite easy to give up at the time.

Do you have any advice for anybody else that, that is still a smoker?

I'd say it's not worth it, no. It's easier to give up smoking than live in a wheelchair… I know a couple of the people I was playing football with that night gave up smoking afterwards as well, just because of the shock and, and the fear in what they saw. They thought, “No, it's not worth it” so maybe in some ways, it did some good to some friends and maybe it's been something that's made it less likely that their health will be damaged.

He recently started some botox injections to relieve a spasm in his leg and hopes that it may allow him to work on being able to stand.

And the other medication I've started recently is botox. I'm not quite sure how common that is but the problem I have with my leg is that the knee don't, don't, I haven't got full movement in my knee, so I can't get my leg straight and it's partly because of the, the ham strings are just like locked solid all the time and I can't relax them. So I went down to the clinic that does this botox treatment and the consultant there just injects botox in the back of my leg into my hamstrings really to just try and paralyse them and knock them off and relax them, so my knee will have better movement and try and get my foot to reach the floor, so I can attempt to try and weight bear on it. And it hasn't helped from a mobility point of view but what it has done is made sleeping a lot better for me in terms of being comfortable because whereas this leg would just be like a solid post in bed and I couldn't bend it and couldn't get comfortable, at least now it's more, a bit more supple, so at least I can get comfortable better now.

And what's it like having the botox injections?

I don't feel it because I've still got so little feeling in my leg, I didn't even know when he puts the needles in… And I think the botox lasts for about 2 months, so I think I go down, I've been twice 2 now, once for every period because I went the first time and went a couple of weeks ago just to have a top-up. So I guess I'll have another appointment in another 2 months now. But it certainly makes things a bit more comfortable and hopefully, I mean, he seems optimistic that it, that we could get some benefit from it, which is nice, because he's the only person, health care professional that I've seen that's said anything other than I'm going to die. So that's quite nice really that he actually says hopefully we'll get some benefit because he says hopefully he can get me to weight bear on that leg, I might be able to do, as he puts, some meaningful standing, maybe able to stand up in the bathroom to shave or something hopefully in time, which sounds like… almost like a dream really. That would be great if I could do that, so I'm not, hopefully he'll be right but I'm not pinning all my hopes on it because I don't set myself up for disappointment but hopefully it will work.

Enjoyed visits home from the hospital and out in the evening, although they made him very aware of his disability and the problems he would face in the future.

Well, coming home was, was difficult at first because all of the, all the doors to get into the house have got small steps, so the occupational therapist came at first to like assess the house to see if I could just be physically able to get in. So she gave my wife these ramps that we could use to get in through one of the doors and worked out which door would be the easiest to get in through. And I had to do like a safety test to get from my wheelchair into a car and just check my transfers. So once that was all sorted out, then it was safe for me to come home and I could get in. I was allowed to come home for a Sunday afternoon I think, I think we picked. My wife picked me up from hospital and brought me home. So I said I would come and have Sunday lunch and see the family, you know, just have some time out of hospital. So I did that and I think I did that 2 or 3 times before my discharge but the thing I used to do as well was when my wife would visit me in the evenings after she finished work, sometimes I would just say to her, “Please just take me out of the hospital, I don't care where we go, just out” and we'd just go in the car and just go for a drive and go to the park and just have some fresh air or whatever. So I used to just go out for short periods, just for half an hour or an hour in the evenings.

And when I was in hospital, well, it was at the time of the European championships football, so I can remember one of the matches that was on, some friends had come up and said they were arranging to go out and watch the game in the pub and they said, “Do you want to come?” and I said, “Well, yeah, OK”, so I asked the staff on the ward, the doctor and he said, “Yeah, that's fine, if you want to go, go, just don't come back too late and not too drunk”, so I said, “OK then” so they came and got me in my chair and had to push me. It's a fair old way from the hospital to the pub we went to, but we went there and watched the football.

One of the times as well when, the disability sort of really caught up on me and it was kind of when I appreciated how much, what effect it was going to have on my normal things in life because I wanted to go on the slot machine in the, when I was in the pub and I managed to put my good leg and with one hand, just pushed my chair a little bit towards the machine and got there, then couldn't reach to put my money in, so I had to stop somebody walking past and say, “Can you just put my money in for me?” And it was just one of those things where I thought, “I'm going to have so many problems, just small things”, things that perhaps you just take for granted that you can do that are going to become major events for me for the rest of my life. So that was a bit of a shock in a way.

His friends were happy to take him away for a weekend and didn't have a problem with him being in a wheelchair.

You know, obviously, you talked a little bit about your friends. I mean, what's their reaction been to you having a stroke?

Still very supportive. A friend of mine got married recently and for his stag weekend, he went over to Amsterdam, which is, which is something I would normally have been one, he was one of the people I used to play with football that night I had the stroke, so he just assumed that I would go. I said, “Well, how are you going to be able to manage me in Amsterdam?” He said, “Well, there's a gang of us going”. There was 10 of us and out of the 10, I think 9 were nurses and one was a, was a doctor, so he said, “We'll be able to manage you, that won't be a problem”. So I said, “Well, if you don't think I'll spoil things, OK” and he said, “No, that'll be OK”. So we did manage to go and had a weekend in Amsterdam, which was really good and managed. It did mean sometimes they had to just all gather round and pick my wheelchair up with me in it and carry me up steps and things sometimes but we managed and it was a good break. So they've been very supportive and helpful, to be honest.

Contrasted the kind, personal, care he received from therapy staff with that from nursing staff in his hospital and advised health professionals to make time to talk as people.

I think in terms of health professionals, it would be sit down and listen and talk to people. Being in hospital, if you've had a fairly independent life and all of a sudden you're taken away from your home and your work and your family and your friends and you find yourself stuck in hospital for, well, the best part of, well, 6 months nearly... it can be a very, it can be very isolating and I did feel very, very alone. It would have been nice to have thought I had a friend in, in the hospital somewhere other than my visitors that were coming in to see me. And apart from the physiotherapists and the one occupational therapist, there was no one I would have turned to or talked to, and there was actually times on the ward where I wanted help and I didn't feel there was anyone there that I could ask, that I felt comfortable to ask for help. I just thought I don't want them helping me because there was no one on the ward that I had any regard or respect for.

The one thing in particular because I can remember I had gone to the bathroom and used the toilet which I managed on my own but what I couldn't do was do my trousers back up again afterwards. I couldn't button up, so I just had to leave my trousers undone for the morning and actually went over and asked the physiotherapist in the other department and she said, “Yeah, of course I'll help you” and asked me why I hadn't asked anyone else and I said and she said, “Oh that's dreadful”, I said, “Yes, that's not a very good reflection, is it on how unapproachable the staff are that I won't even ask any of them for help”. I'd rather go around just with just a pillow put it on my lap so I'm not flashing rather than ask for help to do my trousers up. But she said, “Well, any time you're stuck like that, just come over, you know where the department is, you've got your chair, anything, just pop over, I don't mind doing it”.

But it's just being approachable enough I would say for health care professionals, that people actually feel that because sometimes it's very difficult to ask for very personal help if it's something you're not used to asking for, even though it's something you obviously need. It's difficult to actually ask for it. Well, I certainly found it so and so did other people who I was on the ward with, other patients. They didn't like asking for their help, that was very difficult and perhaps they shouldn't have to ask, perhaps the health care professionals should be understanding enough and trained enough to know that they need to be offering that help not having to wait to be asked all the time. And just sit down and see people as people, not just as stroke victims or stroke survivors which are not terms I particularly like, I've got to be honest... Because I don't feel like I'm a survivor of a stroke, I feel I'm struggling, I'm struggling with the stroke but I don't think I want to be called a struggler either. Just a person. I think sometimes a person is not seen.

He talks about his relationships with his wife and his concerns for the future.

What sort of impact has the stroke had on your relationships with your wife?
 
Well, it certainly changes things in terms of your role within the family because certainly now I’m dependent now, than a partner. That’s certainly how I feel because the things we’ve taken responsibility, the things that need being done in the house, just paying bills, organising things, just running a home, all those sorts of things, all the responsibility of doing that falls on my wife, which I don’t like and I feel, “What sort of a husband am I?” It does worry, I do sometimes think to myself, “What’s my wife getting out of this relationship and how long are we going to be able to sustain it?” When we talk about that, she reassures me and says that she still gets all the emotional support from me that she used to alright, I don’t, I can’t do the physical things but emotionally she knows I’m still there. But it still worries me that perhaps that won’t be enough in time. But perhaps I’ve just got to look at it and enjoy things, take it day by day, and enjoy it while it’s working.
 
Do you mind me asking about the, the physical side of your relationship?
 
No, I don’t mind that, that’s different. It’s not as active as it used to be. But I think any young lady would find a cripple less attractive than the man that she married who was fit and able bodied.
 
Is it, do you, I mean, does everything still work the same as it used to or have you had any problems with that? Sometimes it can be affected by stroke.
 
No, I haven’t had any problems in that respect. No, everything still works. But for me it’s the big thing about being able to do romantic things together. It would be great to be able to go on a holiday, just hold hands and walk along a beach or just go for a picnic out in the, the country and sit by the river and watch, you know, just sit outside and have a picnic and things like that. But if we do anything like that, I’ve got to rely on my wife to push me in the chair, which I don’t think sounds very romantic then, having to be taken rather than me taking my wife. So it’s those sorts of things that, that I think make, make a difference as well and I think it just changes the, the dynamics of the relationship being seen rather than a partner and your, her husband, you know, perhaps I’m seen more as, as a dependent now. And I’m sure that makes it different emotionally in terms of how my wife feels towards me but she says not but I don’t, I can’t accept that that doesn’t make a difference.

Some persistence may be needed to locate useful information on the internet. Comments that friends who looked on the web censored some of the more negative information.

Well, I've got my own computer in work, so I do go on the Internet sometimes and look up things. So generally I think it's out there if you know where to look and your a bit persistent and you just keep looking so you can get some I think if you want to actually speak to somebody face to face and questions, it's the difficult bit. There's not many opportunities, certainly not, not locally. I can do that but Motability, the only information I've had is just off the Internet and all they say is just go to a garage and ask them because sometimes they have someone who specialise in Motability schemes and they work for their garage. So I'll probably be able to do that next but apart from that it's just information off the web about the sorts of cars, different types of vehicles that can be adapted for wheelchair access.

No. I know my wife did and some friends did when I first had it. I did ask someone to bring the information in that they got off the web but they said no because it was all pretty negative stuff and it was stuff saying the vast majority of people who have the type of stroke that I had die.

More information

Learn more about this condition in our stroke section.

Source: healthtalkonline.org (Stroke, age 46-55, interview 19)

Copyright: ©2013 University of Oxford. Used under licence from DIPEx. All rights reserved.

Last reviewed: February 2013

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