Interview 12

Age at interview: 54

Brief Outline: She had a stroke at the age of 48 due to a dissection of the left carotid artery. Her stroke caused aphasia and epilepsy. Medication' pravastatin (cholesterol), aspirin (antiplatelet), Epilim, Frisium and levetiracetam (epilepsy).

Background: Is recently divorced with no children. She is a medically retired teacher. Ethnic background/nationality' White/English.

More about me...

This woman had a stroke at the age of 48. Her stroke was due to a condition known as a carotid dissection of the artery carrying blood to the left hand side of her brain. She now takes aspirin to prevent blood clots forming and pravastatin to reduce cholesterol. 

The main impact of the stroke has been speech problems known as aphasia. Initially her speech was very muddled and she could not make herself understood. Her speech has improved but she still has some problems with speaking and understanding people especially if they talk too quickly. She feels she did not get satisfactory help with recovering her speech whilst in hospital and did lots to help herself including reading simple children's books, copying people on the television and eventually reading from the bible. Her communication is much better now but when she did struggle to understand she found it helpful if people spoke slowly and she sometimes asked people to write things down.

Since the stroke she has suffered from epilepsy. She now takes medication which keeps it mainly under control. She has noticed some problems with her thinking since the stroke including problems with understanding money and problems with following recipes although these are much improved. She also experienced some auditory and visual hallucinations but has not found these too distressing. She is an artist and since her stroke feels that her painting has completely changed for the better. 

Since the stroke she has been unable to continue her job as a teacher. In the future she would like to work as a volunteer supporting other people who have had a stroke. She is a member of a number of support groups and has collected and read extensive information about stroke, aphasia and epilepsy. 

When she had the stroke she was completely paralysed and when she tried to speak strange noises...

After I'd been off to the loo, I continued into my bed. I was waiting and then suddenly the whole thing horrific. I became upside down in the bed. I horrifically couldn't use any part of my whole body apart from one left eye and I couldn't speak. For a peculiar sort of way, I didn't feel concerned. I didn't remember everything very well but shortly after this time I knew that there were some people sat in front of me talking to me, concerning to me and listening to me. They looked disturbed and I was talking a lot but I couldn't hear words from myself. They were very odd and strange noises coming from my mouth going, 'blah, blah, blah, blah' like this and I could hear it but I didn't know whether it was normal or not and then the next thing I knew I was off into the hospital and I couldn't do anything. Everything was just like this (swaying) and I know one of the several doctors in front of me. One was actually smiling because of all this blah blah blah sort of noise and anyway, I'm sure they weren't being hurting but it was most peculiar. 

She had previously been a teacher and felt that not being able to talk or understand people and...

After perhaps a week or maybe 2 weeks later, I'm not quite sure, I was taken left out of hospital and fortunately I could walk, move, I could eat and from those several aspects were good for me. Later, unfortunately, I couldn't understand when other people spoke to me still. I couldn't read, I couldn't write, I couldn't listen. I was totally and utterly exhausted and throughout my life I had only been a person who could have a lot of energy and wanted to chat. Anyway, the worst was that I couldn't speak properly to anyone or really understand it and I felt oddly drunk. Anyway, my life previously I had always been a teacher. I had even received higher up, up to an MA in looking at Hebrews in Religious Studies, but previously I had, I couldn't even look in the Bible or anything and in my belief. There was nothing. In studying with second children or looking at any subject, everything became nothing. Just nothing. My life, as you can imagine, totally changed.

She found it helped to use facial expressions and gestures. It helped her to understand other...

Still thinking about socially, has the stroke affected you getting out socially at all?

I don't find it socially difficult' I mean, I love to go out and to talk to people and to just talk about things for just odd words to help people. Sometimes I suppose, because I have my own power through using my hands, using my mouth, using my eyes, and I use expression sometimes if I find that other people are 100% difficult, I have to say, 'Can you just get a pen, I haven't got a clue what you're saying?' Right. Sometimes people become frustrated or angry. Very, very rarely. Very rarely. But, to be perfectly honest, I would say I think women are much easier than men. Yeah, they are. Women will listen.

Did you find that sometimes it's helpful if people write things down?

Or draw things, yes. Drawing things. Yes. Yeah. Yeah. 

She bought children's books and practiced speaking by copying the news readers on the television...

When you first had the stroke, your speech was very badly affected?

Right. Right.

What sort of things helped that get better?

To speak?

Yes.

Right, OK. To speak. At the beginning, I had no idea about how to speak and I didn't have anyone to really help me. I used to sit with oh, in front of the TV and I would listen to the news and I would watch people's move here (mouth) and if anyone spoke slowly into some of the programmes, that might help me. And occasionally I tried to pick up books written for children and that helped me a little bit and sometimes I would get a children's book with a picture on and I would have say A to Z or something that helped me as well a little bit, very, very slowly. I became very, very frustrated and hurt at one point if people spoke to me, particularly if I made a nice dinner and if a couple came with my husband and I and I made a nice dinner and I watched with people and we talked, I couldn't understand what they were speaking. But if they very kindly looked at me and spoke things, then I could say the odd words, particularly if they were very, very kind caring people, then I could say the odd word. So that would help it got a little bit better. Yes, it was very, very slow. Very, very slow. Particularly during the first, hmm, 3 or 4 years. I couldn't do a thing really. Horrific. Yeah. But I wasn't, I wasn't even angry or anything.

Woman with aphasia had started to use buses which was hard but she has learned how to do it.

Can you tell me about using buses?

Right. Well, buses I think up until about hmmm 9, 10 months back I started taking buses and my husband said to me, 'Now, look here's a piece of paper, there's the money and go off, go on' and I found it at the beginning horrific. I was frightened. I couldn't understand the left and the right. I couldn't see were the buses going that way or that way. I can't understand the amount of money. When I got the money and when I got in the bus, it seemed too quick to get my feet and my leg up into it and I was frightened of the whole thing was opened quickly or close, you see, and I would say to the man, 'Can I have the bus please?' but I, I was like, 'Here's my '2 and I think it's '1.30' and then he said, ' bla bla bla' you see and then he would tell me off because I hadn't given him the piece of paper [coughing] and then I realised that I wanted to sit right near by so that I can press to a, a place to help people, so I can press and say I want to get off soon, very soon. I was really scared of that because, you know, I was carrying a bus, you know. And then and then eventually I thought, right now I've got to get up and I've got to press something and say [sighs] 'I'd like to get out now' but when I came out towards the door, I was terrified. I thought my legs were coming out too quick. It was fine actually but oh, it took me weeks and weeks to do it properly. I'm much better now and of course I find, I still find it very difficult when I have difficulties about going in the right directions, the right amount of money, whether it's freezing cold, rain, an umbrella to carry oh, it's horrible. It makes me up, almost upsetting, particularly if I've gone to try and buy and buy something, I don't know, potatoes or something. Horrible. Horrible. 

But have you found it an achievement to be able to use the bus?

I'm getting better and better but, oh, it has been very, very hard work. Very hard work. Mm hmm.

Person with aphasia felt that the speech and language therapist was rude and did not care about...

Eventually I was given a speech therapist and I saw her and she was incredibly rude to me. She said to me, 'I don't like what you're wearing' and I looked at her and I thought, 'What's, what's that got anything to do with it?'  and she said, 'I'd like you to read and write something and bring out something' so I brought her a piece of writing about something that I thought she would be pleased and she said to me, 'Well, that's very good, you didn't very well etc'. She was really, really critical all the time and, and she spoke very, very quickly all the time. She didn't like me. She really didn't like me. Yeah. We didn't like each other, I don't think. Or rather, to be perfectly honest, only about a week ago from here, I found her in town and I saw her and I said, 'Oh, hello X, how are you?' and she said, 'Oh, are you better?' and I said, 'Yes, I'm fine, how are you?' and she didn't want to know. She turned away and walked off. She's I think there's something wrong with her. But anyway, this is nothing to do with it but shortly after the very first time that she was supposed to be someone to help me I had epilepsy and she was supposed to be helping me to read and write, all the rest of it. But she was making me feel like this. She was really hurting me and it was nasty to me. I could say a few more things to tell you about this but a few of nurses I have heard that they don't think she's very nice either. But anyway, there's, but anyway, I don't want to quote about things like that but there's something wrong with her because, in me personally, if I was going to talk to somebody, I would talk slowly, I would look straight in the face, I would listen with care, etc. She wasn't like that at all.