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Dealing with a diagnosis of motor neurone disease

Chris Jackson | 19:30 UK time, Monday, 22 February 2010

Brian MorrinBrian Morrin is a remarkable man. At just 38 years old he is contemplating death, because he knows it's coming quicker than it should. But he is upbeat.

Brian has , a degenerative illness, that has turned him from a super-fit rugby player and cyclist into someone who has difficulty lifting a kettle.

He knows that eventually he will lose control over all of his movement and will have to be looked after.

Life expectancy after diagnosis is usually about three or four years, but as we've seen in tonight's programme .

I have no idea how I would deal with the news that I only have a few years left to live. It's tempting to describe someone in Brian's position as brave. From my chat with him I think he sees it much more as being a realist.

What the doctors told me was that after the initial shock they more often than not see a remarkable resilience in their patients. Without a cure, the outcome is inescapable. The only variable is the amount of time one has left.

For Brian the condition meant eventually leaving a job at . He'd spent a lot of time travelling so with his optimistic outlook he saw the brighter side - loads more time with his kids, Isla and Anya.

Brian reads his book to one of his daughtersHe has written and illustrated some books which he hopes might even be published. I've read through a few and they're great. It's his way of leaving something tangible behind not only for his children, but for future generations as well.

Part of the motivation for speaking about his condition was that we would be filming him and our report would in itself become a way of his young children remembering him as a still active daddy.

In the film we explore the rather counter-intuitive factor that some people who develop this degenerative disease were actually very fit. It's not a cause in itself, but something that experts like feel could be a key to understanding motor neurone disease.

Willie MaddrenBrian, just like Willie Maddren, has wondered what might have led him to become ill, but it seems speculation is not something you want to waste precious time on. Neither of them appear to have wondered "why me?" That's something that the researchers sadly still have to figure out.

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