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Interview 06

Age at interview: 53
Age at diagnosis: 50
Brief Outline: Diagnosed with Multiple System Atrophy in 2000.
Background: Master in the Merchant Navy; married, 3 children

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He would like to believe that there is something after death but wonders if he is 'clutching at...

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He would like to believe that there is something after death but wonders if he is 'clutching at...

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Do you have any particular philosophical view or religious view about life and death?

Everybody would like to hope that if they peep behind the curtain, there's something there. There are probably greater minds than I have, thought about it. And others say, 'Well, what is the point of this life if there isn't something there?'  But are you grabbing at straws again, just for your own sake?

So would you say you've just got an open mind on it?

Yes. I don't know whether you say you die when you die or what if there is something? Everyone sort of says, 'You've got to make the first move to say, yes, I believe', and all that nonsense. But, is it again, clutching at straws?

Yes. I understand what you mean.

Is it for the right reasons?

Yes.  

I'll find out before you.

 

Thinks he should have been given advice about practical matters such as a 'living will'.

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Thinks he should have been given advice about practical matters such as a 'living will'.

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Yes. So just to finish off this bit about your views, about your needs and with the care you're getting, is there anything else you want to say about what's been missed in terms of your needs?

I think that people should come up to you say, 'Apart from medical things, have you got everything in order?' like wills and all this sort of stuff. I think this is important so it's not - I don't want to use the wrong word - messy.  

So everything is, like it is, accepting things. Like, I've made a will and I've made like a living will so that, hopefully, that helps the doctors make the decision whether to turn off the machines - because, as I say, I'm slowly getting... failing. I know it's got it to be done so I've done it. But it was me instituting it, not them and I think they should have given me some advice.

 

Advises others to make a will and 'tidy up' any outstanding matters.

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Advises others to make a will and 'tidy up' any outstanding matters.

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Yeah. So what other advice would you give them?

Make a will.

Make a will, yeah.  

Tidy up all your matters. I've tidied up 90% of my stuff. I've got just 10% to go.

You've done 90% of it?

I've only got one last thing. I had the will before and I've put everything in order. I've started clearing out my clothes and so I'll get rid of them to a mate of mine. Sort through my gear but most of that's done. I've ear-marked things I want people to have, whatever, some daft things.

Did you say you'd done some daft things?

Yes, I want some little daft things, what I want people to have.

What you want?

Certain things I want certain people to have because everybody wants to be more than a speck of sand, don't they?

I agree, yes.

 

Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should...

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Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should...

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If you had a person in front of me now and if they had characteristics I am portraying now, the characteristics of MSA [Multiple system atrophy] - they are quite general, like movement, speech, etc. etc. - I would sit that person down, if he had just been diagnosed, and I'd tell him exactly what was going on so he can make decisions because you cannot postpone anything. If he said he wanted to walk up to the top of Mount Kilamanjaro, that's the time to do it. You don't get a second chance at it. 

People have got to do whatever they want to do now and not listen to anybody and just go out and do it. Do their most heartfelt desires because, once this thing starts biting, you can do very little and it's very, very, very frustrating. Don't take 'no' or 'later' as the answers' because that's what I've done.

You mean you did take 'no' or 'later' as an answer?

Yes. I put off something last year. It was something I should have done. Now I thought I could do it this summer but I can't.  

I may be able to do it, may be' but I wanted to do it on my own and now I realise how weak I am. If I fall down on the floor, sometimes, depending on how I fall, I can't move. If it happens to me in the wrong place, at the wrong time, I'm in big trouble.

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