Derek – Interview 27

Derek was diagnosed 5-6 years ago (2001 or 2002). His arms and legs are affected but he is still able to walk unaided round the house. Finds his memory for words is being affected.

Derek first noticed something was wrong about 6 years ago when he started to get muscle twitching in his legs. On one occasion when playing in a golf tournament, he went to hit the ball and fell over. His GP referred him to a neurologist, and within a few weeks he was diagnosed with Motor Neurone Disease. His wife was with him when they were told the diagnosis, and they were both shocked and tearful. Until then he thought it was probably just signs of old age or arthritis.

At the time Derek felt the information was too negative and would have liked to be told more about the fact that different people are affected differently and that some live longer than others. He used to feel he had no future, but as time has gone by, he has started planning ahead again. Now he deals with the condition by putting it to the back of his mind whenever he can and enjoying life as much as possible. It is frustrating not being able to do simple things he used to do, but he can still drive and has an electric wheelchair to get around the village independently. His wife helps with tasks like washing and dressing, and they have a strong relationship together. Their children and grandchildren have also been very supportive and have arranged big family holidays abroad, which he has really enjoyed.

One effect of the condition which troubles Derek is pain in his legs, for which his GP prescribes strong painkillers. He takes riluzole, which his GP negotiated for him. He is also a diabetic, so he has to manage his blood sugar level carefully. Another symptom he has started to notice is that he finds it harder to remember specific words when he is talking or doing the crossword.

He and his wife tend not to go to support group meetings, partly because they find it sad to see other people with the condition getting worse over time. They draw support mainly from each other and their family. They have a good GP who provides most of the care they need, and they have had some adaptations made at home. However, Derek feels sometimes staff have provided too much equipment that he does not want or need, and he worries this is a waste of resources that other people might need more than him.

He supports other people’s right to choose to end their life, but he personally would never consider it. His message to other people with MND is not to think about it too much – to ‘let it all happen and fight it as it comes.’

It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as…

Age at interview 73

Gender Male

Age at diagnosis 68

Yeah [coughs], everything’s changed in our lives. But I can pull it together just purely by pretending that it’s not there. But everything is there, and I know it’s there, and I know it’s not going to get better. But that’s the only way I can see the way of looking at it, is just that it’s happening and it’s going to happen. But it’s going to happen to me, but I mean I can, I can foresee me lasting another twenty years. But she, our relationship has changed terribly, really, you know, it’s completely changed. You know, I mean there’s no, there’s no sex. But there again, you don’t need sex as long as you’ve got somebody to cuddle. That’s the most important thing. ‘[coughs] And that upsets me.

Do you want to stop for a bit?

Yeah, it does spoil, it’s spoiled our, well, it hasn’t spoiled our relationship, it’s sort of, it’s made it difficult. You know, something that’s never been like that, and all of a sudden it is like it, and you, and for the last six years it’s kept me like it. And you just keep on going.

Has it, has it made you closer in some ways?

Oh, yes, yes, it has in, in some ways made us a lot closer, yeah. You know, as I say purely by just – as I say, you don’t have to have physical sex. You can, we can, I can cuddle her and, I do in bed and things like that, you know. And I hold her, and all this sort of thing. They’re all things that – and I try to be as physical as I can. But if your legs and your arms don’t go the ways you, the way you’re predicting them to go [laughs], it’s a bit difficult believe you me, yeah.

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No one can predict how the condition will affect you, so never give up hope.

Age at interview 73

Gender Male

Age at diagnosis 68

I think that one of the most important things is to look at it from your own point of view. Always look from your own point of view. Don’t listen to what other people – because everybody’s got their own way of thinking about it. Everybody, they all say you can read this, you can type that, you can what’s name. But when I’ve read bits and pieces that you, that you’ve got on about all this sort of thing, I think that it’s very, very difficult, especially when you’re in a position where you have got a problem and you’re not going to get over it. But never believe that you’re never going to get over it. Because there’s always somebody that will get over it and prove you, prove you wrong. They will. As I say, I mean, you get all the, the magazines and things like that – people have had it for a while, people haven’t had it for a while. But never think that you’re never going to get over it. There’s always that chance. I think there is, anyway.

So you feel people ought to just kind of put it to the back of their minds?

That’s right.

Yeah?

Yeah. I think it’s all at the back of your minds, yeah, yes. And the longer you can have it at the back of your mind the better off you are, yeah.

Is that how you deal with it?

That’s how I deal with it, personally. And as I say I’ve gone six years now. And I know quite a lot that haven’t, yeah.

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He personally would never consider assisted dying, both for his own sake and his wife’s, but he…

Age at interview 73

Gender Male

Age at diagnosis 68

They had one [TV programme] a few months ago about the chappie that went to Switzerland and got himself injected, you know. Now that I couldn’t do. I wouldn’t – for her [wife’s] benefit, for one thing – and the other thing is I’m too much of a bloody coward, mate. I don’t like needles at the best of times. And when they’re going to fill me up with something that’s going to knock me off, that’s a little bit round the corner. I don’t favour those sort of things. But I don’t worry about them then. I’ll sit and watch it, you know, just to see what sort of feedback you get back from the people that are around him and things like that, that actually went with him to do the job.

Do you think it’s something that you would want other people to have the chance to do, even if you wouldn’t choose it?

Oh, I think, morally I think that it is actually a simple fact that you should be given the choice, you know. No, I think that you should be. I can understand it in some ways, because the issue is taken away from the person’ No, I think that people should be given the chance. I’ve never been in the position where I’ve looked at, ‘Oh, I wish I was bloody dead’, you know. I mean, I wake up in the morning sometimes or in the middle of the night and I’m hurting so much. But I’ve still never came to the decision, I’ve never sort of looked at it and thought, ‘Oh, I can’t have much more of this. I’ve got to pack it in.

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He was brought a lot of equipment he hadn’t asked for and didn’t want. Most of it is in the shed.

Age at interview 73

Gender Male

Age at diagnosis 68

I got this stool, which is about 3 feet high, for a shower. I mean the whole point is I can’t get in the bloody bath for a start. So what on earth they’ve given me a stool to put in the bath for, I don’t know. It’s absolutely ridiculous. Then I’ve got another, a small one for this and that. A thing to go on the loo, which I don’t need. And I told them when they bring all this stuff. I mean, when they turned up with it all first time, it was a vanload, bits of this and bits of that. And it’s all unnecessary. They should give you something directly to start with that you can actually get on with and do. Like I have this electric lift in the bathroom’ I bring it up to the level with the top of the bath, I turn round, sit in it, turn myself round, lower it down, I’m up to here in water.

So that’s been a useful aid?

That has been the only thing that they’ve given me – oh, except for the wheelchair obviously, they gave me a wheelchair’

Right. Has anybody ever come and said, ‘Do you need it? Or shall we take it away?’

No.

So you’ve got it all.

It’s all in the shed.

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Some of the bathroom equipment provided was no use. He thinks staff need to adapt their advice…

Age at interview 73

Gender Male

Age at diagnosis 68

I mean they gave me a – it’s, they gave me a round stool that you put in the bath and sit on. Now how the hell do you sit in it, put your bum on a round thing in the middle of the bath? Because you can’t get in the bath for a start. That’s the first thing you’ve got to get over, yeah. Get in it. And then again if I drop the soap, where does it go? Always goes the same way, downwards. You don’t get, you don’t get a lump of soap that comes upwards or floats, yeah, yeah.

And you said some of the equipment you’ve just got sitting in the shed?

Oh, yeah, yeah, we’ve got a lot of stuff. A toilet lifter, it’s just an extension of the toilet, which is no good at all. Because you can, you utilise yourself as to what you can do with what you’ve got, rather than trying to change your ways to their sort of ideas. You know, it doesn’t work like that. It works like how people can manage their lives with what they’ve got, rather than trying to change their ways. Yeah, you can’t change, you can’t change your ways to somebody else’s thinking.

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A physiotherapist suggested exercises he couldn’t physically manage. He felt she did not know…

Age at interview 73

Gender Male

Age at diagnosis 68

I had another lady come and she was a physiotherapist, she brought me all sorts of exercises and things. But you see, you’re trying to explain to her what you want her to exercise, because she’s telling you what you should exercise, but in a lot of cases there’s no way you can. You know, it’s so easy to say, ‘Oh, well, you get on this machine and you bend yourself over this way, and then you go up and down on your hands. But nobody realises that you can’t go up and down on your hands. I can’t get on my hands and knees and do press-ups, and this sort of thing, which they say, ‘This will do you the world of good.

Is that because you think they don’t know enough about motor neurone disease?

I do, I do. Oh, yes, I think a lot of it’s back to knowledge. And, you know, they look at you from a point of view that’s, ‘Oh, yeah, well, this sort of strengthens the arms. I can understand that it would – a lot of the exercises would, you know. But there again, if you can do it, is the important thing, and how much it hurts you and all this sort of thing.

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He recently had a ‘funny turn’ and became confused. He finds it harder to do crosswords or read a…

Age at interview 73

Gender Male

Age at diagnosis 68

Yeah, well, as I say, that – when I had a funny turn about two or three weeks ago, was it? I don’t know when it was. I just didn’t know, I just did not know where I was. I didn’t know, I’d been to, I remember going to this dinner for a friend of ours, his birthday, and we had a good time. We, we got lost going over. I can remember getting lost in the car. You see, now, that wasn’t me, because I knew my way all the way round this area, all the way…

You were driving?

I was driving. And we went, and got there. We was a bit late because there, I didn’t know exactly where this pub was. But we had a good time, we had our meal, and things like that. But I can’t tell you what happened afterwards. I can’t tell you, I can’t tell you if I saw a doctor. I got lumps taken out of my hands, I know that, where they was taking blood tests out of me. And I was laid in a bed, but I wasn’t there as long as I thought I was, I was there. I was there – I felt as if I’d been there ages. I didn’t even know my name. I just, it just was, everything had gone. But you see, and then of course I, I come back with the world, with the world of pretend again. I, get out of it that way, you know. I mean, if they’d have said, ‘What’s happened to you?’ I could have told them what, what’s happened to me. But how I got it, or what happened to me, put it that way, I don’t know.

You talked a bit about feeling that, that the condition has affected your ability to remember things[Oh]and to find words. Just tell me a bit about how you noticed that happening.

Terrible, it’s absolutely terrible, the words that you can’t find. Always reminds me of Ronnie Barker and his ‘worms’ [laughs], you know. It’s a relief, you know, you can look at something and, and think that somebody else has got the same thing. But, I mean they haven’t, but this is just all part of the, the game really.

When did you first think it was affecting your memory?

Oh, about a year ago, eighteen months ago, maybe.

What, what made you first become aware of it?

I can’t read.

What, when you pick up a book you can’t?

Yeah, I can’t concentrate on it. Yes. And that’s what causes – again, it causes panic. Because you, because that, that’s a substance that you can look at. You know you should be able to do this, or you know you should be able to do that. There is no way that you shouldn’t be able to, at my age, pick up a book and read it. But I don’t, don’t read at all now.

And crosswords, I think you said.

Oh, crosswords, I do the crosswords. Well, again I used to [laughs]. I don’t do them as well as I used to. I mean I used to be able to do sort of The Telegraph and things like that. But I, I’m shot right out there now. If I get halfway through The Sun I’m very lucky. Yeah. But I still keep on trying, because you never know – it might come back. If I got it that easy, I bloody should be able to get rid of it somehow, shouldn’t I?

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He does not want to read about life expectancy. He deals with MND by making believe it’s not…

Age at interview 73

Gender Male

Age at diagnosis 68

Oh, the views, the views that you get are horrific. All of the, the, the picture you get of it is terrible really, some of the stuff they write down. I mean nobody lasts any – well, according to some of the, some of the stuff that you read, I don’t know where it comes from, but I mean, you know, everybody says, ‘Well, you only last eighteen months anyway. You know, you don’t, you don’t last very long with this sort of thing. So I thought, ‘Well, that’s a bit of a blow, that is [laughs]. I’ll have to see what I can do about this, you know. This isn’t, this isn’t my way of thinking. Got to get round this somehow. And, and that’s how I’ve, I’ve got my thoughts about this right the way through, that, you know, there is, it’s a, it’s, well, I put it down like it’s a natural something that goes wrong with you, you know. And if it goes wrong with you, you’ve got to get over it. And you give it a try. And you try all the things that you read in the, the magazines that they send you, and all this sort of thing. Always sending you, I get a monthly magazine and, you know, people write in it, and listen to them and talk about it. But as I say, that we’ve just coped with it like that. That’s the only way I’ve, that I can cope with it.

It’s just sort of not’

It’s just, it’s just not there. No.

‘happening.

It’s just not there. You know, I mean, I can get over it by thinking, by making it, making believe that it isn’t there, I suppose. It’s a – you see, I’ve got a world of make-believe, and that’s, that’s how I live, my world of make-believe. It’s just not there.

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He first thought something was wrong when he noticed muscle twitching when playing golf. One time…

Age at interview 73

Gender Male

Age at diagnosis 68

When I first knew something was wrong, I was a golfer, and I started to get, my muscles in my legs started to twitch, as they do normally now. When I’m laying in bed my legs are doing this, you know, where the nerves are jumping about. Anyway, I went to the doctor’s. And he said, ‘I don’t like that. I’ll send you to see a specialist’, which is what I did. But I had to wait about six weeks or eight weeks. But the first time it actually affected me was in a competition for golf called the Turkey Trot, just before Christmas. And we all presented ourselves and had a game or went to have a game. I got round to the sixth hole. I took a swipe at it and I just fell over. And I thought, ‘Well, I shouldn’t have done that’ because I’ve never missed a bloody golf ball in my life, you know. So I didn’t play any more, I just came home. Well, I went back to the clubhouse. And they said, ‘What’s the matter?’ I said, ‘Well, I don’t know. I said, ‘I feel rotten. I said, ‘And my legs are giving me some stick. Anyway, so that was it. And I went to the doctor’s. And then, well, about six weeks afterwards that was when I got the interview with him. And so that was when he told me’ But that was the first time I actually said, you know, ‘What on earth’s wrong with my legs and my hips?’

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