Interview 09

Age at interview: 31

Brief Outline: She had a stroke at the age of 30 due to a clot which possibly originated from a hole in her heart. The stroke could also have been caused by smoking. Her stroke caused visual memory and visual field defects. Medication' simvastatin (cholesterol), aspirin (anticoagulation).

Background: Is a married mother of 2. Was a production operator but is not working because of her stroke and young family. Ethnic background/nationality' White/Scottish.

More about me...

This woman had her stroke at the age of 30, 4 months after the birth of her second child. Her stroke was hard to diagnose because she was so young and her symptoms were unusual. The doctors initially thought that she was suffering from migraine or a head injury. 

The stroke was due to a clot lodged in the visual areas of her brain. The clot could have possibly come from a small hole in her heart although this was not confirmed. She has been advised not to take the contraceptive pill since her stroke or to have more children as there is an increased risk of her having another stroke. 

Her symptoms, which are relatively rare following a stroke, include problems with visual memory, including memory for unfamiliar faces and problems with visual depth perception. She initially found it hard to recognise even familiar surroundings but now tends only to find difficulty in new places. One of the biggest challenges for her has been following directions and getting to places. With the help and encouragement of a community occupational therapist she was recently able to walk her daughter to school which she was really happy about.

Her friends and family have been supportive particularly her husband who took on a lot of responsibility for looking after their young family. Her friends sometimes forget that she has had a stroke but she does not mind as she sometimes thinks it is better to talk about normal things.

The staff in A & E did not realise her symptoms were due to stroke because she was young. They...

Right. So we must have went by car to the hospital and I think at that point I still couldn't see a thing. No, I couldn't see a thing at that point. And we went into Casualty Department and I got took in right away and the hospital' were asking me things and I just, you know, my husband told him as well, what I've just said there and it must been throughout that night, I think I got kept in that night. I think throughout that night they were asking me the story over and over again and I was telling them exactly what had happened. I got up, I wasn't feeling too well, had a bit of a sore head, and then it got worse and worse and worse until a few hours later, it got really, really bad and I just told them the story and' they kept asking me if my husband had hit me over the head. At first, they were asking had I banged my head and I kept saying, 'No I have not banged my head, I just have a sore head'. But then they kept saying, 'Are you sure you've not had a bang to the head?' 'No'. Then they would ask my husband to leave the, the room, which I thought was a bit strange [laughter], then they said, 'Did, did your husband leave the room?' I said, 'No, is anybody listening to me, I just had a sore head'. And that went on for quite some time. So the next again morning I got let out and they said on the letter, it was a migraine. 
 

The hospital initially diagnosed migraine but later her husband saw a poster on stroke and...

So we went back to the hospital and' I got kept in that night again. Right. They were going to run more tests, they still thought it was a migraine at that point but my pupils, I heard one of the doctors saying that my pupils were still a bit dilated and but not to worry about it but my husband was then saying, 'Well, surely a migraine you wouldn't have that', but he had said there's different types of headaches, so, and they can be quite serious. I got kept in again that night and' my husband went home to get some stuff and bring them back and when he was in the lift, he'd read something about strokes. It was a really big thing on the wall telling you about strokes and what the side effects can be and everything and he read it and' said to me that he'd read this thing and it sounds like I've had a stroke. So he then went to the doctor and said, 'I think she's had a stroke' and the doctor had said 'She's too young for a stroke' and my husband disagreed. He said, 'I disagree with you, I'd like you to check her out for a stroke' and he went, 'She's too young for a stroke'. So he then went to another doctor and they basically said I was too young as well for a stroke. But I think he got through to the other doctor. He said, 'We'll put her in for a brain scan or CT scan, MRI'. So this was on the Monday morning now that I got the MRI scan.
 

She has some loss of peripheral vision and poor depth perception which makes crossing the road...

You were talking about your vision and, you know, maybe not having as wide a visual field and how, how does that make you feel with the, with the children?

Well, that's quite, it's quite dangerous actually like I need to, I know how dangerous it is. Like, I need to be careful when I'm crossing the road out there with them, it's not just me that could get killed crossing the road, it's them as well. So I know to take my time and really, really watch what I'm doing. Also things like when I'm carrying the baby, I need to watch that I don't miscalculate if I'm walking through a door because if I'm carrying him and he's on my hip, he could get bashed on the door frame' so I've been not too bad with that and because I've been over-compensating, it's usually just me that gets [laughter] gets hurt but, like, he's been fine but the eyesight again on stairs, especially now , I need to' I can walk up and down the stairs myself, I feel quite dizzy but really hold on' but sometimes with the baby, I've got to get him to bump down because he's no very good on his feet. So if he's no good on his feet, I'm no good on my feet because of the eyesight, it's really, really tricky. So I get him to bump down and I go behind him and it's easier. So I think there is ways to compensate it when the kids are concerned just to kind of look out for things. So it's not been too bad in that respect. I have found ways round it as well. 

She has a relatively rare visual problem which makes it difficult to recognise unfamiliar...

So what sort of things? Could you look at an object and name it or? 

Yes. I didn't have a problem, like I knew, I knew a television was a television. I knew things like that. I just couldn't find my way around places. I couldn't I couldn't recognise anything. Like when, for instance, for example' if I was to say to you the toilet's the first on the right, I'd go, first on the right, I'd go, where, where's my right? And then I'd say, is it first or second on the right? I'd forget the actual command as well. I couldn't picture it because it was my visual memory. I didn't recognise anything about, if I went out my ward to the toilet, somebody had to take me [laughter] because I couldn't find my way back and I was panicking because obviously it's a panicky thing, if you're lost, if you've never, you know, I had a great sense of direction beforehand, that I could drive anywhere I wanted whenever I wanted, you know, it didn't phase me at all, I would just go and do it. Whereas now, I can't even get to the toilet by myself and get back. This was in the ward. So I got every test under the sun.

You said that they didn't do very high tech tests. Did you have another test when you came out of hospital?

Yeah. I got another test, it was about four months later, four or five months later because they wanted to wait until the brain had settled down, so that it was a more honest result but the hospital were really good and the doctor that took me for like the eye tests and that, she explained a lot about, because I thought, I thought I was going a bit mad because I felt' I didn't know if my eyesight was really bad or if it was, you know, I know it wasn't bad because I could see but it was so different. It felt bad because it's so different to what it was and I started to imagine that that was actually the case because I thought, I can see and surely if you can see, then you've got good eyesight. I can see anything I want to look at, so I've got good eyesight but it feels different and it wasn't till I went back to the hospital that that consultant had explained it. Where the stroke had affected me, she actually described to me symptoms and it was spot on to how I was feeling and then I started speaking to her and there was different things as well because as this point, maybe five months, five months after the stroke, she had said about the colours, she said about depth, she'd said about feeling of dizziness and things like that and visual memory was also comes into the eyesight because eyes and visual and I was having an awful problem finding things. 

OK?

After I'd came out of hospital, while I was in hospital, I didn't know where things were in my house. When I came out of hospital, I still didn't know where things were, where they were kept in the house, I didn't know where things were, I couldn't put things away, everything was a big effort. But' when' when I got a bit better and I started to remember where things were, because it was my own house and I was doing it all the time, eventually the brain says, 'This is where this is kept'. But like I was often losing things that were right in front of me and the consultant at the hospital said that's part of that part of the brain that's been affected. Things can be in front of me. I've done it myself before the stroke, you can't find something and it's been right in front of you all the time. But now I do it all the time and it is quite frustrating because you can look for something for ages and then all of a sudden you find it and then' the other thing as well is sometimes I can be looking for something in a supermarket looking for a tin of beans, I can't find that tin of beans because I can't actually, it can be right in front of me but I can’t find it because it’s right in front of me but I can’t actually, my brain can’t actually pick it out because it’s the visual part of my memory that’s gone.

She has trouble recognising and remembering new faces which can be embarrassing when she meets...

How about maybe meeting new people? 

Well, meeting new people' I start, I kind of shy away from doing that. Not that I'm unsociable, I speak to people and that and pleasant but I don't really like to do it, more so now because I'm frightened in case I come away with something stupid or they see me forgetting something and they're like, 'She's just said that' or, because I do repeat myself, not that much but I can do it and I do it without knowing I'm doing it and they would pick that up right away. Somebody that you don't know picks that up right away. Sometimes I can't be bothered with the hassle of overcoming that sometimes [laughter]. That sounds quite unsociable but then again there's times when things slip out in front of people' like' I forget someone's name, which is quite common occurrence. Anybody could do that. Some people aren't good with names, some people aren't good with people's faces. 

Well, I am absolutely rubbish now with both of them [laughter] and it was actually my next door neighbour a couple of doors up, they've not long moved in and I've basically walked past her twice and it's because, I've looked at her as well and I've thought, 'That looks like that lassie but it's not that woman'. I've thought to myself, 'No, it's not, it just looks like her' and it's been her but I know I wouldn't have done that before I had the stroke. So twice she's done it and I've went, 'Oh sorry, I never seen you there'. The second time I thought, 'That's too noticeable, she's thinking that I'm doing that to ignore her', [laughter] and that's very unsociable. So the second time I said, 'Look, I'm really sorry', I said, 'But I've got a problem visually', I said, 'And I can't remember faces' and I said, 'Look' and I explained to her I'd had a stroke a year ago and that's why it happened, I'm not being ignorant and I sometimes don't want to tell people that but sometimes I feel it's necessary because other things could come across ignorant if you don't. And the minute you say it, they're OK, quite embarrassed and I don't like saying it because they do get a bit embarrassed but sometimes it's necessary because, it can, whatever's happened can be quite ignorant. But I don't want to go out like meeting people because I don't want to come out, I don't want to have to come out and say, 'This is why' because I just want to be normal but eight times out of ten, sometimes, some things happen and I think they will come out as being ignorant or a bit, she's a bit dozy [laughter] but it's not. 

She was put on a statin as a precaution even though she doesn't have high cholesterol.

Since having the stroke, have you had to take any medication at all?

Yeah. I've had to take aspirin daily and that's to thin the blood and simvastatin.

What's the simvastatin for? What's that for?

That's a cholesterol lowering tablet. Just a small dosage of that though.

So was your cholesterol level high when you had it tested?

No. No. Cholesterol was fine. They couldn't find anything wrong' at all' But they put it down to, they put the stroke down to smoking and' being on the pill. But the doctors, well, a couple of doctors told me that they couldn't see anything to suggest that that's what it was because the arteries were clear and they couldn't see any, they would, they would have expected to see evidence but they've got to put it down as something, so they put it down as smoking and being on the pill. The cholesterol tablet, my blood pressure was fine, my cholesterol levels were fine but they put me on that just to be on the safe side, just as a precaution.  

And how do you feel about having to take the medication?

It doesn't bother me in the slightest, I just take it and I know it's for my own good, it's no going to do any harm, it's nothing strong, I mean, aspirin's not strong and the simvastatin, so it doesn't bother me.

Has learnt about stroke from a variety of sources and been surprised to discover that there are...

How about looking up any information? Have you looked up information about stroke?

Yeah, I've done that. I've got a lot of information from the hospital and off my occupational therapist and I've looked it up on the Internet as well. So I've looked up a lot of information about it and' I think it, it, it brings home that not every stroke is the same. I only thought there was one stroke and that was it but obviously there's different types and how they can affect you and everybody can be affected differently and that. So I've learned a lot. Yeah. 

Anything that sort of surprised you about the information that you read on the Internet?

Well, to be honest with you, it was more my husband that read a lot, but a lot of the information on the Internet was information that I already knew or, or I already had because we had a lot of information packs on it anyway. It was all' telling us like the cause of ones and that and, well, we really knew the causes by then. We didn't at first before, like, I had a stroke, I didn't know what caused it or if anything caused it but we knew the factors and who, who was at risk but we had had a lot of information off the hospital. So it, it was really just the same information.

She talks about how the stroke has impacted work, driving, family and future plans.

 

Do you thing having the stroke, has it, has it changed any of the goals that you had previously?

 

Hmm. Well, I was meant to be starting back my work after my maternity leave of having a wee boy and obviously that, that’s not going to happen now because I live too far away from it and I can’t drive to get there. But at that time, I had just had a baby, so the only goals were to be a family unit at that time... so I suppose, I can’t drive now, so I mean, all, I always took that for granted. “Look it doesn’t matter because I’ll never be stuck anywhere, I can just go wherever I want to go” and I can’t do that now, so I suppose it wasn’t really a goal for the future but, it’s, I can’t do that. But really, it was just to, just starting a young family, so that was my priority. Goals, I hadn’t really thought career wise that it was, my career was going to change, even within the next maybe five years. I hadn’t really thought that far ahead, to be honest.

 

Do you plan to have any more children?

 

No. I don’t plan to have any more children, I’ve not, I’m not really allowed to have any more children as well. It wouldn’t be a good idea, the doctor had said if I was to have any more children. So, and to be honest with you, I don’t think I could cope, I really couldn’t. Two is plenty and I’m really kept busy, more than I had ever imagined especially now, with the way things are, memory and everything, I couldn’t manage with another so there’s definitely not going to be any more.