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Our Story
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This man is interviewed with his wife. He had his first stroke at the age of 59 followed a few months later by a second. He is now 62. Both strokes were due clots which were thought to come from a rough patch on an artery. He takes medication to prevent blood clots and to reduce his blood pressure and cholesterol.
His initial stroke was difficult to diagnose because his symptoms were unusual. His main impairments are uncoordinated movement (ataxia), problems with slurred slow speech (dysarthria) and with swallowing (dysphagia) due to lack of coordination of the facial and throat muscles. He has double vision and wears glasses with a frosted lens so that he only sees one image. He also experiences poor risk assessment and sometimes feels he can do things that he is not safe to do like walk or make a cup of coffee.
He also uses a special additive to thicken his drinks so he does not choke and takes medication (hyoscine) to reduce saliva.
After both strokes he was in hospital for rehabilitation where he was helped with his speech and using the computer. They also tried to get him walking again but he found this difficult and has since been in a wheelchair. He can however transfer in and out of the chair and can also move around when there are things to lean on. This has been good as it means they have been able to get back to their hobby of narrow boating.
His wife feels that the most important thing is that they can still communicate. They have learnt to overcome his other disabilities. They, however, both feel that there should be more support for partners. |
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Suffers from ataxia due to damage to his brainstem this results in lack of coordination and balance.
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So if you could perhaps then talk about your experiences of trying to explain your symptoms from the stroke?
Husband: Yes. I think when I talk about my stroke, I try to talk to people as if I'm fairly normal and forget what I need to tell them about how things have changed and what I've suffered. And I think very often they tend to assume that stroke means either left or right handed damage and in my case I have all the original muscular strength but I suffer from something called ataxia which basically means lack of co-ordination, so I can stand up and do things but I don't know, as somebody said, he can stand up but you never know next what your feet will do and I think that's quite useful.
Wife: You can only stand up if you're holding on to something.
Husband: Exactly. |
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Has double vision and wears special glasses with a frosted lens. He also lacks coordinated movement of his eyes.
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So do you know which of the main areas of the brain that have been affected by the stroke?
Husband: Well, they identified some bits of the brain basically attached to do with… well, they said originally some words about sight and I can't remember what the other things were but the problem I have with my sight is that although both eyes work the brain basically doesn't know what to do with the two signals from the eyes, so I tend to see double now and basically I can use either eye so each month I change around and use one eye .
So you wear the patch, patch?
Wife: Yes.
Husband: Well, if I take this out, I can see normally but I see two of everything [laughter].
Wife: They did do some tests to see if you could have prismatic lenses which can correct double vision but because the eye ball movement is not co-ordinating properly, apparently they, they can't give you prismatic lenses unless you're eye balls are moving in co-ordination, so…
Husband: And also I think that if you move to one side, they need different correction for the middle, so there, they can't use prisms. They can only use prisms if you need the same correction in both eyes and in the middle. |
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Has to have drinks thickened with a commercial thickener to avoid liquid trickling into his lungs because of ataxia.
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Wife: But his speech was affected because of the ataxia, it's the muscles round the mouth not being able to move properly that's the cause. And swallowing's affected, so we had to, he has to have everything thickened now.
Husband: Eating tends not to be a problem but swallowing drink is difficult.
Wife: Well, to start with, you had to have your food mashed up.
Husband: Yes. But not now.
Wife: No.
Husband: Now I think the problem basically is that if a drink hasn't, isn't thickened I tend to cough a lot. If liquid trickles down from my mouth into my lungs, they can't do anything about it, so they, they insist that all my drinks are thickened because then my mouth knows to shut the valve to the lungs and, and it means basically I can't drink fizzy drinks because thickener doesn't work in them.
How do you find having to have the thickened drinks?
Husband: Well, you, it's like so much, you learn to get used to it. I would, would prefer not to but in another sense I think if [my wife] is happy to add the thickener, it's better to accept it because actually it doesn't put any more pressure on [my wife] and they said they'd try and do some more tests sometimes and I had a couple of tests early on with a barium meal and they took x-rays of my throat to see what I was swallowing and they decided that it didn't change. I'll probably at some stage need another test but until then I'm quite happy to put up with it. It is a problem more because my wife needs to remember it whenever we go out.
Wife: I have to have my little pot of white powder in my handbag if we want to drink out anywhere.
Husband: And like lots of these things, you know it's there and it is different but you learn I suppose to put up with it. |
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Their daughter's son was initially wary of her husband because his voice had changed by the stroke but with time has adjusted.
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It was a bit difficult with, our elder daughter has a stepson who was, had known [my husband] before the stroke and he found it quite difficult to cope with as a 3 year old. He, he was a bit scared of Uncle [name] and his growly voice and it took quite a few visits before he accepted him and then once we came to live here and he saw him all the time, he's, he's OK with him now and our own grandson is obviously just going to grow up, he completely accepts [my husband] in a wheelchair, it's, you know, they're together and voice , he's just going to grow up accepting him as he, as he is. |
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Set himself a goal of being able to speak and stand for his daughter's wedding and got a standing ovation when he gave her away.
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Husband: Yes, I can't remember much more apparently I suspect because when I came out of that my mother died and really the big stroke happened after that and then I think it was a matter I suspect of finding out what I could do and what I couldn't. When I went into the teaching hospital again, I said, “I want to learn to stand up because our oldest daughter was getting married and I really want to give her away” and so the staff and the nurses worked quite hard at making sure I could stand up and speak.
Wife: And say “I do”. That was in the rehab unit. He went to the rehab unit at the beginning May, May the 11th and she was getting married on May 31st and he said, “I want to be able to stand up and say I do”, so that was his aim for the first 3 weeks.
And did you manage to do that?
Husband: Yes. It's the only wedding I've been to where somebody gets a standing ovation for saying I do. |
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They think that support is mainly given to the patient and should be more readily available for the family. They eventually got help through a stroke club.
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Husband: Well, I think that is a general comment which is that most of the care is given to the patient and not enough attention is paid to the carers and supporters. There really wasn't any much support for [my wife].
Wife: Although there was if you found out about it but the social worker…
Husband: It didn't come looking for you.
Wife: …told us about what was available for [my husband] but it was only really through the stroke club that I found what was available for me as a carer and the, the carers set up where we were. So I think it would have been helpful if, right from the outset, they could have said what was available for me as well as what was available for him. |
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Patients and carers need a lot of information after leaving hospital, including information about benefits. They appreciated leaflets from the Stroke Association which explained about mental and emotional changes.
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Wife: At, at the point when you come out of hospital out of rehab, you need a lot of information for the patient and for the carer and… it would be, it would be overwhelming to have it all at once but then you need it all at once because it, it you need to know it's there even if you don't access it straight away. It would have been nice to know that there were things for carers going on, although it took me a while before I was able to leave him on his own and go to things… But we did have help from the, the social workers in the rehab unit organised the claim for disability living allowance and incapacity benefit and blue badge and told us about anything we wanted to know on that score, so that was good… So that we got everything that we were entitled to, without means testing [laughter].
Have you looked up any information about stroke at all?
Wife: We've had all the… we've had various leaflets from the Stroke Association about cognitive changes and… I had some background knowledge of stroke because my sister had a stroke in her early 30s and I knew that one of the things which people don't usually recognise is the emotional changes, so I was prepared for that... But we got yes, leaflets from the Stroke Association I think the main source of information and also I think staff at the rehab unit were, were quite useful at the psychologist they had particularly was quite good at explaining how the different parts of the brain were affected… and I know I've probably forgotten it all now but it was, it was quite good to have somebody to explain it then and, as I say, to have literature that's available. I don't think we've used websites much, have we, because we read things at the time really… But I think if, if you're not aware that stroke can cause the sort of mental and emotional damage, it can be a bit of a shock that there are, there are changes in [my husband's] thinking which is very hard to put a finger on but it, they, they're different. It's not quite what it was before. |
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They used to attend a stroke club in London which provided exercise and support for people who had had a stroke and also contact with other carers. Older people seem to be more insular where they live now.
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Husband: I notice up here in [where we are living] that lots of people, older folk with scooters for example, really don't pay much attention to anybody else. You have to wonder what, why they are like that. I think it is because they are encouraged all the time to think about themselves rather than other people. I was a member of a stroke club in North London for 2 years and I think that really helped keep things a bit in focus because you realised that other people are a lot worse off than you and their carers too have a difficult job.
Wife: I, and, but this day when he went, it was a very unusual stroke club in that it was, it lasted for the whole day and they had exercise, an hour's exercise in the morning and they took their sandwiches and then they'd have a talk or games in the afternoon and so it gave me quite a few hours on my own. Although, to start off with, we went together and in fact the first day [my husband] went on his own it was a bit like first day at school, he wasn't too happy about going on his own [laughter]. But, it was good because I met other wives who, it always seems to be wives who are in the caring situation and you could compare with them and as [my husband] said, you, he met people who were worse off than him in, in different ways. So you, it puts things into perspective. |
