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Friday, 19 January, 2001, 12:32 GMT
'Drug has prolonged my life'
Charlie Cowper-Johnson
Charlie Cowper-Johnson and his wife Ann
The National Institute for Clinical Excellence has ruled that the motor neurone disease (MND) drug riluzole should be made available on the NHS.

MND sufferer Charlie Cowper-Johnson tells BBC News Online how taking the drug has, he believes, help slow the progress of his fatal condition, diagnosed in February last year, just weeks after his wedding.

Charlie Cowper-Johnson, 33, from Chester-le-Street, County Durham, was looking forward to his wedding when he developed pains in his left arm in October 1999.

His delivered furniture, and the problem affected his work, but he and his wife-to-be Ann put it down to a trapped nerve.

If it keeps you alive for a fortnight longer, it would be worth it

Charlie Cowper-Johnson
He said: "Ann thought I was a bit of a hypochondriac. But after Christmas I went to the GP."

The GP sent him to a specialist, who recommended hospital tests immediately, but as it was just weeks before the wedding, the specialist told him to enjoy his wedding and honeymoon and come back for tests on his return.

Mr Cowper-Johnson said: "I wasn't too worried because I thought it was a trapped nerve, but it was in the back of my mind that it could be Parkinson's or Motor Neurone Disease (MND).

"When I was diagnosed, it was hard to take it in at first. But when my wife came in, it dawned on me that I was going to leave her a widow.

"The news rocked the entire family. But it hasn't really hit me yet."

'One hope'

Mr Cowper-Johnson was prescribed Riluzole, but had to wait until April, the start of the next financial year before he could receive it.

He said: "For a lot of people, it's the only thing on offer, and it's a great help that it will keep it [MND] at bay.

"If it keeps you alive for a fortnight longer, it would be worth it."

Mr Cowper-Johnson is unable to work, but he and Ann, 33, plan to go on as many holidays as they can before he gets too ill - including celebrating their first anniversary with a trip to Paris.

Mrs Cowper-Johnson said they want to go

He now has difficulty walking, especially outside.

He said his arms and fingers are "next to useless".

He also has problems balancing.

He said his condition does get him down. "To have been a fit person and to be reduced to this."

The couple both believe the drug has delayed the onset of worse symptoms so far.

Mrs Cowper-Johnson said: "I think it has slowed the progress of the disease. His left arm was bad when he was diagnosed and the right one was starting to catch up.

"But its taken a year to do that."

She said Riluzole should be available to all MND patients, and used the example of another MND patient with two small children who died 13 months after being diagnosed, without having the drug.

"For some people it is a lifeline, and their only hope."

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