Interview 18
Age at interview: 64
Brief Outline: She had a stroke aged 59 which caused right weakness, pain, vision & memory loss. Medication' perindopril, amlodipine (blood pressure) pravastatin, Ezetimibe (cholesterol), aspirin and dipyridamole (antiplatelet), escitalopram (depression), carbamazepine (pain).
Background: Is a married mother of 6 adult children and a retired neuropsychology assistant. Ethnic background/nationality' White/English.
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At the age of 55 this woman had a visual test and they found a gap in her visual field, this is sometimes a warning that a stroke might occur in the future. She was told to take aspirin but felt that this was not emphasised enough and consequently she did not take it regularly. Fours years later she had a stroke. Initially she was sent home from hospital but was re-admitted and stayed in for 8 days. She now takes perindopril and amlodipine to control blood pressure, pravastatin and Ezetimibe to reduce cholesterol and aspirin and dipyridamole to prevent further clots.
Her main problem since the stroke has been weakness and loss of sensation in her left leg and arm. She has also had some problems with a painful frozen shoulder on the right and with central post stroke pain. A combination of the weakness and pain has made it difficult for her to walk. She can walk but uses a mobility scooter for long distances.
She has also experienced some loss of peripheral vision (left hemianopia). She finds she often bumps into things and knocks things over. She has noticed that she has difficulty reading particularly when she tries to sing because she misses the first word of the line. She has also experienced some problems with memory and sometimes finds it difficult to remember unfamiliar faces.
She has suffered from depression since the stroke partly because of the pain and partly because she feels that people are not very sympathetic about her condition.
She has not joined a support groups but find that support from other friends with long term conditions invaluable and recommends this to other people. Her husband is also very supportive and has taken on the domestic tasks that she can not manage.
She has had another stroke since the time of the interview.
Her main problem since the stroke has been weakness and loss of sensation in her left leg and arm. She has also had some problems with a painful frozen shoulder on the right and with central post stroke pain. A combination of the weakness and pain has made it difficult for her to walk. She can walk but uses a mobility scooter for long distances.
She has also experienced some loss of peripheral vision (left hemianopia). She finds she often bumps into things and knocks things over. She has noticed that she has difficulty reading particularly when she tries to sing because she misses the first word of the line. She has also experienced some problems with memory and sometimes finds it difficult to remember unfamiliar faces.
She has suffered from depression since the stroke partly because of the pain and partly because she feels that people are not very sympathetic about her condition.
She has not joined a support groups but find that support from other friends with long term conditions invaluable and recommends this to other people. Her husband is also very supportive and has taken on the domestic tasks that she can not manage.
She has had another stroke since the time of the interview.
The loss of sensation makes it feel like half her body has been removed and reattached and when...
The loss of sensation makes it feel like half her body has been removed and reattached and when...
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Feels that painful conditions after stroke are poorly understood but has received useful...
Feels that painful conditions after stroke are poorly understood but has received useful...
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Well, for instance, when I had when I first discovered I'd got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don't think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you're not in a stroke unit and the nurses where you are don't realise that if your arm isn't laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It's the most terrible pain I've ever had.
She has loss of her peripheral vision on the left and finds she knocks into things and sometimes...
She has loss of her peripheral vision on the left and finds she knocks into things and sometimes...
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My vision?
Mmm.
Well, it's not too bad now. Initially, oh, within a couple of weeks I just stopped walking into a really nasty parking sign about this level, well like where you're standing, about that level. Fortunately I had a friend with me and she pulled me away because it was just going to hit me there and then trees often are a problem but because I've got used to it now and a hospital sign was a problem because in one of the big hospitals round here they've got these signs sticking out along the corridor but I've got used to, if I'm anywhere where trees are now, I know I can't see properly out of my left eye and so I tend to get hold of them with my right hand and then sort of take myself round a bit.
So, oh course, I can't drive anymore. I'm not allowed to drive and if I'm reading, and this has been a special problem when I'm singing, I can't see the first letter sometimes or the first word and so I sing the wrong bit [laughter] and also when you're, when you're, when I'm trying to sing a part, I can't I can't find pages well enough, so I've just given up singing with that choir. I just sing in the church choir and I just sing the, the main parts, I don't do a descant or anything. It's not affected my reading I don't think. Oh well, only things like reading for music because normally when you're reading a book or a paper with something written all over it, you I suppose, I don't know, you just adjust to it. Well, maybe I have adjusted to it. It's difficult when I'm trying to find things because I've also lost some of my central vision and so that's difficult and we haven't got things filed very well [laughter] in this house, which drives me mad. I used to work in a hospital and in a psychology department and it was very badly filed when I went there and I made it all absolutely beautiful and I want to do that at home but we've got a filing cabinet but we've just discovered it's got no key [laughter] So we're going to have to try and get one, so I hope that will help. Of course, I do knock things off sometimes. Yes. I do knock things off and they do tend to be liquids but I don't seem to do that as much as I used to so then I suppose I've got used to it and of course I get used to not putting things in the kind of place where I know I might be likely to knock it off.
She finds recognising unfamiliar faces and directions in new surrounding difficult.
She finds recognising unfamiliar faces and directions in new surrounding difficult.
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Well, the only thing I, I know, I mean, my left side is all affected and then this particular part that causes the central post stroke pain which they used to think was quite rare but research in the 90s showed about 1 in 7 people have, have it when they have a stroke, especially if you're under 60. I was 2 days under 60 [laughter]. One of the places is also, I think it's the same person, I can't remember, it's at the back somewhere it causes me not to recognise new faces and also I can't navigate so I can't drive any more but I can't navigate for my husband and I can't navigate on simple things like if I go into a ladies toilet in somewhere unfamiliar, I don't know which way I've gone in and which way to come out [laughter] and like my eldest son has moved since I had a stroke and I don't know my way round his house at all. And, oh yes, the faces one was very weird and difficult. That was discovered the first day I was in hospital because I had doctors coming to talk to me who had spoken to me the day before and I didn't know who they were at all but it didn't affect anyone I knew before. I recognised everyone I knew maybe 40, 50 years ago but all new faces I can't recognise at all. So what I have to do is I have to do things like thinking well, has this person got, are they wearing something unusual, and also I've always been very good at recognising voices and I've got even better at that. So that's one of the things that helps me with that but I don't think anything can be done about it.
She takes an anti clotting drug that contains both aspirin and dipyridamole which she finds much...
She takes an anti clotting drug that contains both aspirin and dipyridamole which she finds much...
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Finds intimate contact difficult because of central post stroke pain makes her sensitive to touch.
Finds intimate contact difficult because of central post stroke pain makes her sensitive to touch.
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Well, I, in some ways it's brought us closer but in some ways, it's been very difficult. One of the first things that I can recall was that in my left side, my stroke side where I've got this central post stroke pain [laughter] I can't bear anybody touching me either on my bare skin or like on top of my clothes and so I did find myself so often saying to him, 'Oh, you know, don't touch me, get away' and so... any kind of intimacy has not been, not been on the cards at all and of course, it, it coincided conveniently possibly [laughter] with my husband getting... oh, I've forgotten what it's called. Diabetes. And so we weren't, he wasn't able to have sex and I wasn't interested and we, then that's how it's continued. He did, on the advice of a friend who's a GP, he did get some tablets once but neither, of us were all that interested and we've just, we found to my amazement [laughter] that we're just not interested any more and so it's not something we miss.
I mean, I miss, it's very difficult to explain. I miss being able to cuddle up to anybody but that's, that's not a psychological thing. That's because of how my, my body feels, you know. What happens when you've got, when you've had a stroke, well, this is how it's, it feels to me, it feels as if you've got half a dead body, maybe you've had an accident and half your body's got sliced off and then somebody's stuck it back on because it's there and you're learning to walk on it like it might be if it was an artificial leg but it's, it's not there right. It's, it's just, I mean, it's not there correctly. It's as if this horrible accident has happened and somebody's stuck half a body back on to me but it's not mine and it doesn't connect up with anything and so if I'm thinking like getting back into bed in the morning if I, if I've got up in the morning and I'm thinking of getting back into bed with my husband and snuggling up, it's not like it used to be because that half of my body can't snuggle up to anybody any more. I've only got this half and that half is OK, that half is just the same as it was before but [ooh, beg pardon] it's too overwhelmed by the left side. It's as if the left side were actually much bigger than the right side. It's as if maybe my hand and my arm are alright but the rest of my body's dead because although I can see and feel logically that it's actually only half my body, it doesn't feel like that because it's like, it's like a dead weight and, and it's a dead weight that can't be comforted.
Get in touch with the Stroke Association for good information. It's good to meet other people who...
Get in touch with the Stroke Association for good information. It's good to meet other people who...
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Told the occupational therapist that she was feeling depressed by not being able to do things and...
Told the occupational therapist that she was feeling depressed by not being able to do things and...
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Feels that painful conditions after stroke are poorly understood but has received useful...
Feels that painful conditions after stroke are poorly understood but has received useful...
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Well, for instance, when I had when I first discovered I'd got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don't think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you're not in a stroke unit and the nurses where you are don't realise that if your arm isn't laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It's the most terrible pain I've ever had. You can't get away from it because you can't lie or sit or sleep in any position where you can get away from it. So the only thing you can do is resort to very, very strong painkillers but nobody's going to give you those forever and it can go on for a long time, you know, 5 or 6 years although it won't be as bad all the time. It'll, it'll get better gradually.