Yes, I met some, I met some smashing people actually, we, we were very sort of, I mean, we were right across the class range, I mean, you know, very different bunch.

Did that help in any way to, you know, motivate you to, to get better? Was there any competition or anything like that?

I don’t think it was that exactly, there was every so often, we had little, sessions for people who could stand and, we would sort of, we would play, sort of routine tennis, you know with bats and balloons back and forth. So that was quite a bonding exercise but it wasn’t competitive as such. No most of the people, I’m talking now about the [the hospital]. Most of them were, were a good lot, good fun. And we had, we had a few laughs, bit like a kind of grown up boarding school really.

How about, good examples, you, you know you mentioned about the guy at the gym who was a very good example of

Oh yes, oh yes hes’ Now he was, he would put me to shame to be honest. He because the sheer amount of physical exercise he did and was determined to do was so great that in the end he decided he, he ought to become a gym instructor and was a good one too. And hed had, if anything I think, a worse condition than mine in that hed lost a lot of speech ability as well has having lost a lot of mobility. But hed obliged himself to get rid of his stammer or his, you know, his speech difficulties. And had really, really, really worked hard at it. Younger than I am, only in his thirties. Very, very admirable guy. Really amazing.

I was wondering if you’d had any contact with any support groups for people that have had a stroke at all or looked up any information about strokes?

Well’ apart from actually speaking to people, there are 2 or 3 members of [my wifes] family have had strokes, actually died from strokes. It seems to be kind of, inherent, if you like, you know. Her mother had a bad stroke 2 years ago and that left her with no speech the only other people really I’ve come in contact with is, has been at the cardiac gym the rehab gym, and not just stroke patients but all kinds of patients but stroke patients have been there, you know, and it’s very, very interesting to speak to, you know, people that’s had the same kind of injury as yourself, you know, it really is, it’s very enlightening, you know. And the likes of, you get a talk after the cardiac rehab gym, you get a half hour, half hour talk, be it on diet, be it on stress management, what causes stress, how to beat it , heart problems, what causes it, how to beat it, you know, strokes, what causes them, how to beat and they’re really, really interesting. Really interesting. And you get a talk, we had a talk from a, the pharmacist in the hospital and explained how, the difference between heart attacks and angina and strokes, all that kind of thing, you know, and it’s very, very, educational, you know. And it’s been a great help. It’s been a great help with, with diet and your exercise and drinking liquids and stretching various parts of your, your legs and, you know. Aye, it’s been very, very education. Very, very good.

But I say I’m very comfortable when I’ve got my, my groups, my group. We have 2 groups. One is the stroke, stroke association, that’s, what we have a, theres about 20 of us and 4 of us in little, one table and we all, were all given little tasks, the task is something like perhaps a topic, what you think about this and the idea is that we just talk and of course we have a helper. These, they’re not, they’re not trained other than just trained, trained that way. They’re not sort of professionally trained, just good helper, helping and they just help us and the idea is that they will just sort of get us going, you know. So of course were all trying to do that and I really enjoy that because it’s 2 hours, we have a cup of tea and we have a raffle and we have a good laugh really. It’s great and weve got a good helper and we are, I find that’s fine. So I come away after about 2 hours and boosted by it, you know.

I think back to the groups, you know, the groups I go to, they really, all the time, they’re really, they’re smashing. That’s really enjoyable that where you can you can get the attention and they’ll listen to you and you’ll listen and you tell them the same story again, it doesn’t matter. It, it’s terrific and theres no, theres no judgement, you know, everybody’s sort of friends together, you know, that’s really nice, good.

What, tell me what you do when you go to the meetings?

A coffee. Well the, I had juice because I can’t Fanta and lemonade, ugghh, a stroke is strange, I don’t know but anyway. Chatting and conversation. ‘Ah hello, hello’ and, because [one of the men] is a lively one so upstairs and the group divide and talk about, you know, books or film or, you know, literature, you know. You know, the Queen, you know. So, and all of us in the circle is and then’ and coming altogether and running up, you know, the I can’t say it, you know the but, anyway.

Is it helpful to meet other people that have the same experience as you?

Yes. Exactly the same as me. Aphasia. One side of my body, well, the different other side of the body but I didn’t know because Australia only 2 or 3 got it but’ lots of people had aphasia on the right side, yeah.

So it was helpful to meet other people?

Yes. Finally, finally. And numbers, you know, I can’t add up, you know. Different. Yes. Finally. This is it. Connect [laughs].

HusbandI 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.

WifeI, 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.

Well, as far as support goes, it wasn’t a case of support with Different Strokes. I was kind of disappointed with the Different Strokes meeting. I mean, I went there and there was, was a, was a good turnout, a big turnout but what I found was they were more or less talking about, I was wanting to talk about my experience and get experiences back from them and there was very, very little of that. What I did get was all this fundraising ideas. That’s what they wanted was fundraising ideas, you know, well do this and well do that and I wasn’t wanting that. Go away to some place for the day and that’s not my forte, you know, I’m kind of independent that way. I was wanting to go my own places and what not but that’s what I found with the Different Strokes meetings. I was very disappointed with that. I don’t go to them any more. Maybe because there was a lot of people there, you know there was one lady that I still keep in touch with. I take her to the gym twice a week with me and that’s the only person that’s really in the stroke group that I kind of tied to, you know what I mean. Talking to her now when I go back and forward about her stroke helps me too, you know, which she can do, she went through what I can do and what I went through and we bounce off each other and that’s what I was wanting at the stroke meeting but I never got that. I only got very, very little at all. Only 4 people there that gave me information or experiences, you know, that’s, that’s what I went for. I wanted to meet people who had the same thing as me and see how they cope and I never got that from the Different Strokes meeting. So I’m afraid I don’t go now.

So can you tell me about your experiences of perhaps using a support group?

It was suggested to me that it might be helpful to visit a support group and there was one locally, well actually in Coventry, which is not too far away from here which was intended for young stroke survivors as they like to call us. So I thought, well, it might be helpful. And the only, well it only helped the other people I think it’s been a disaster for me. I went one, the Saturday before Christmas and I remember I went and I got all nicely dressed up, my high heels, make up, the lot and it was full of people who absolutely, it was morning and it absolutely stank of drink most of, which I couldn’t believe and they all smoked which also I couldn’t believe. A lot of them were on their fifth or sixth unexplained stroke, which I really did not need to hear, that people were having over and over perhaps drinking and smoking perhaps they were and it was horrendous and I know my GP that I work for said to me afterwards, ‘There is something weird about people getting together when the only thing they’ve got in common is an illness’ and he was so right. Never ever would I do that again. Never. Because it was true. All that the people were interested in talking about was their illness. So it was nothing in the way of a support group at all and it just made me feel dreadful because I thought, ‘These people have had 3, 4, 5, 6 strokes, when am I having my next one?’ But it made them feel wonderful because I’d had one and looked great [laughter] so did them some good and not me.

Can you tell me how you found out about that and, you know, if you’ve got any other experiences using support groups?

I liked the idea of young stroke survivors, because it’s very different to, with respect to older people, it’s very different when you’re 41 and disabled to when you’re 75 and disabled. You’ve got a whole different range of issues to be dealing with because you’re younger.

I mean, some of me thinks, ‘Well do, what help will I really get from being around stroke survivors?’ Now, maybe I’d get a lot actually because it’s, it’s like having one foot where I’d like to talk to people who’ve had strokes and then on the other foot that says, ‘Well [own name]’, one foot where I’d like to talk to people who’ve had strokes and the other foot that says, ‘Well, really, you need to get on and go, move forwards, and integrate that into your life. And I happen to have a close friend who has had a stroke, a major stroke as well. So I mean, he and I are in quite regular contact, so we can talk to each other about, how fed up we get with not being able to walk properly [laughter], or people pushing us in shops or, the sorts of things that stroke survivors want to moan about occasionally or joke about. And I prefer that with a friendship. Yeah.

You get very, very close to the ladies either side of you because they tell you about their lives and about their past and about their children and it’s very, very hard because you get quite attached to them and a couple of them passed away whilst I was in there and I found that very hard to deal with because it’s something, I had lost members of my family but not spoken to them at 10 o’clock at night and had a conversation and then lost them during the night and then going and saying ‘Come on [name of another patient] eat your Weetabix’ and [name of another patient] not there any more so the whole process of being in hospital was completely life-changing for me.

It’s made me a much more humane person. It’s made me much more aware of other people, especially older people and people who have pain, which is something before I’d never had to deal with. I now understand a lot of the issues if you see an old lady and shes finding it difficult getting on a bus, to help and to sit and to chat. I find it much easier now to talk to older people , I think it’s actually, in a way, made me a far nicer person maybe because I’ve had to take the time out in my life and readjust totally my whole values to my life and it does bring it down to ground zero and you start from scratch.

Yes. I’d probably been in, I’d been in the hospital bed probably, I think it was about 2 days before they actually asked this lady, who’d been a patient, who was a patient in the hospital, to come over and talk to me and shed had a stroke and they said that this lady had had a stroke and I thought, ‘Well, you know, this lady is standing by my bed, shes had a stroke and she was going, she was going home and so I thought, ‘Well, you know, that’s really good, shes been here a little while, she was going home and it was possible that I was going home at the end of that week’ so I, I thought, ‘You know, things were really not too bad and then I was told that it would be a very long time before I went home from the hospital and that’s when I think I realised that something very serious had happened to me and really, I suppose it really hit me then. I suddenly realised that things were pretty bad.

How did you feel, you know, that they’d done that, that they’d brought somebody to see you’?

I think perhaps that was wrong. I mean, I understand why they did it and I, I’m not really criticising them because I think they felt that I couldn’t talk to anybody. Talking was very difficult for me in those first few days. I could talk but it actually sounded as if I was permanently drunk I suppose. It was very slurred and I found it difficult to get the words out and so I think talking to somebody who actually stood there looking quite normal, I thought, ‘Well, you know, I shall be like that in a couple of days’ and of course it doesn’t work out like that. I think they wanted to, I think they wanted to encourage me and because they saw that I felt so helpless, I think they wanted to give me some sort of, some sort of hope I suppose and so they produced this lady who was going home in the hope that it would make me feel better. Whereas in fact when I found out that I wasn’t going home, it certainly made me feel an awful lot more miserable. So, but I think they had my best interests at heart. It’s just that, you know, it was a bit of a shock when I found out that I wasn’t going to go home in a few days, so that was not so good.

Have you had any experience of support groups for stroke at all?

I begin to think that a support group would be very helpful, especially for Asians, it should be a helpful. We could exchange, we could talk about it, what is happening.

But I definitely wish to see that stroke support group should be there. That would be better than spending more time in rehab because in rehab, psychologically, you are still in an environment which is technically surrounded with machines, with white collared doctors with stethoscopes which psychologically affect you, you are a sick man.