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Living with DyingArrow
Age 51-60
Interview 06  

Interview 06

Age at Interview: 53
Sex: Male
Age at Diagnosis: 50
Background: Master in the Merchant Navy; married, 3 children
Brief outline:Diagnosed with Multiple System Atrophy in 2000.


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Male
Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should do what-ever they want to do quickly.

 



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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