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Motor Neurone DiseaseArrow
ALS- amyotrophic lateral sclerosis/MND aged 50-64
Stuart - Interview 05  

Stuart - Interview 05

Age at Interview: 62
Sex: Male
Age at Diagnosis: 53
Background: Stuart is a retired electrician, married with 3 grown-up children. Ethnic background/nationality: White British.
Brief outline:Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.

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He has taken up writing, art, local history and running a community website. He's writing his life story for his grandchildren.

 



In between writing my life story, I started watercolour painting. Not very good but it was a pastime. I've since progressed to writing various articles on local history and the project I'm working on now is a complete, I'll start again, is a list of shipwrecks along the old county of Glamorgan coastline, that extends from just the other side of Gower peninsula, just to the east of Cardiff. And the earliest wreck I've been able to find on record is dated 1737. 

I also run a help page on our local web site. It's the type of page for anybody wanting information about the town or the surrounding area. I help them in that respect. I also try to reunite old friends and families. People who've moved away trying to get back in touch with friends back here. So I don't get many requests, maybe half a dozen a year, but through it I know have contacts all around the world, which gives me a lot of pleasure and I'm sure by the reaction and the thanks I've had that the people I've been able to help are more than satisfied with the service I am able to provide. Basically that is what I do with my time.

If you lose the ability to do one thing, think about another that you can do. I now produce electronic art through my computer. Not only does it amuse me when I make mistakes but I get great enjoyment out of it. Think about writing your life story for any grandchildren. Or if you have young children, and I hope nobody takes offence at what I'm saying, think about your own children and put them in a position where they can pick up something that will teach them about your own life and your background. Unfortunately I lost my father when I was fourteen. I knew very little about his background and I'd not been able to find out as much as I would like to know about his childhood and his upbringing. I know about his adult life but not about his childhood. 

Don't leave your children or your grandchildren in that situation. Try and cater for them. If you can't write it yourself, get a friend or a family member to make notes of what you say and it doesn't need to be in any special type of book, an ordinary writing pad will do, so long as you get it down on paper. Or if you are able to use a computer, write it on your computer and copy it on to a disk. So your children or grandchildren will know something of you and the life you had. That is very important to the way children react later in life. Don't give up. It's not worth giving up.
Jonathan Miller - Motor Neurone
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