Derek - Interview 27
More about me...
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.'
He does not want to read about life expectancy. He deals with MND by making believe it's not...
It's just sort of not'
It's just, it's just not there. No.
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.
He first thought something was wrong when he noticed muscle twitching when playing golf. One time...
He was brought a lot of equipment he hadn't asked for and didn't want. Most of it is in the shed.
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?'
So you've got it all.
It's all in the shed.
Some of the bathroom equipment provided was no use. He thinks staff need to adapt their advice...
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.
A physiotherapist suggested exercises he couldn't physically manage. He felt she did not know...
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.
He recently had a 'funny turn' and became confused. He finds it harder to do crosswords or read a...
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?
It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as...
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.
No one can predict how the condition will affect you, so never give up hope.
So you feel people ought to just kind of put it to the back of their minds?
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.
He personally would never consider assisted dying, both for his own sake and his wife's, but he...
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.'