Bid to spread awareness of disease

Barry Norman.

STEPHEN PULLINGER

18 March 2010

Four years ago Barry Norman was working 16 hours a day as a lorry driver and still finding the energy to go running and help around the house.

Now he is limited to a few faltering steps, his breathing is impaired, his voice is slurred and he can only stay in his home in Coronation Avenue, Rollesby, near Great Yarmouth, thanks to a range of hi-tech aids, including a special chair and toilet.

What makes living with motor neurone disease (MND) even harder to bear is the public's lack of understanding of a disease that affects only two in 100,000 people.

“When I have been in the pub, I have known people say 'I don't want to talk to Barry because I can't understand him'. Others walk away because they think I am drunk,” he said.

It is to spread greater understanding of a disease that progressively and cruelly takes away all bodily control that Mr Norman's daughter Louisa, 24, is organising a spring ball in aid of the MND Association which supports families in a range of ways.

The event in the Zest Rooms at Potters Leisure Resort, Hopton, on Saturday, April 24, will include a guest appearance and speech by Sarah Ezekiel. A mother from London with MND, she has become a national figurehead for sufferers, striving to increase understanding through her harrowing video accessible at www.sarahsstory.org.uk

Miss Norman, a singer whose five-piece band Harley Street will perform at the ball, said support from the MND Association was all the more important because NHS help for sufferers was patchy.

She said: “There are special neurology nurses in some areas, such as Norwich, but that has not been the case in Yarmouth and we have consequently missed out on certain treatments and medicines.”

Miss Norman, who lives in nearby Ormesby with her daughter Letetia, four, said the onset of MND could be shockingly quick.

One day her father had been sitting watching television when his left hand began shaking; within days the tremor had progressed up his arm and he was unable to hold even a carrier bag.

Miss Norman, now the full-time carer for her 60-year-old father, said it could make families feel very isolated, and she praised the “brilliant support” she had received from her friend Glynis Sinclair, from Lowestoft, whose husband Graham was diagnosed with MND three years ago.

Although Mr Norman admits to bouts of depression, he takes comfort from the fact he is not dying in vain.

“My philosophy is that if one in 50,000 people get it, and I have it, that means 49,999 other people have not got MND,” he said.

There are 240 tickets available for the ball, which includes a three-course dinner, at a cost of £35.

There will be a raffle and auction of items including a Harry Potter film set crew jacket and photographs signed by the actors.

To book tickets or kindly donate raffle prizes, call Miss Norman on 07787 894239 or 01493-732775 (after 6pm).