Coping with motor neurone disease

PUBLISHED: 09:02 21 November 2009 | UPDATED: 15:41 03 July 2010

HE was a fit, active, strong- willed man dedicated to hard work - but now Barry Norman is unable to feed himself after suffering the ravages of motor neurone disease.

HE was a fit, active, strong- willed man dedicated to hard work - but now Barry Norman is unable to feed himself after suffering the ravages of motor neurone disease.

The 60-year-old requires round-the- clock care at his Rollesby home for the degenerative disease which attacks the nerves in the brain and spine.

Mr Norman has already managed to confound the medical experts who said he would be dead within nine months of the condition being diagnosed in 2006.

Despite suffering severe mobility problems, he still enjoys a drink with friends down his local pub - The Grange in Ormesby.

Daughter Louisa, 24, is a full-time carer for her father and has seen him struggle with the indignities of the illness first-hand.

She said: “It is heartrending. Even a few months ago dad could still pick up a sandwich. Now I have to feed him and sometimes he uses a tube.

“In his younger days he liked boxing and running; now, he cannot even go to the toilet on his own.

“Emotional support is as beneficial as the physical support, both for carers and the sufferers. The future is so uncertain and no one knows how much longer he has got.”

Currently, there is just one specialist neurological nurse employed by NHS Great Yarmouth and Waveney, but it announced this week that the number would be increased to four in the new year.

Louisa has had a frustrating time seeking specialist help and advice for her father, for whom she has been caring full-time since January last year.

A retired lorry driver, Mr Norman lives with his wife Brenda and 13-year- old daughter Holly.

Louisa said: “We feel really isolated; there is a support group at the James Paget, but dad is too frail to travel there. There is a lack of co-ordination with care provision and we have to do things ourselves like organise physiotherapy.

“We have had help from a Macmillan nurse who is a friend of the family and dad's GP is fantastic. He has to use a stairlift but is so frail he cannot sit up straight. We are finally getting a bathroom put in downstairs, but needed it two years ago.

“Dad is so brave, it amazes me every day how he copes with this illness. He wants to raise awareness of it to help others.”

Professional head of adult nursing, NHS Great Yarmouth and Waveney, Elaine James said: “One of our key priorities is to make sure that everyone with a long-term condition has easy access to high-quality services and individual support.

“Funding for three additional neurological nurse specialist posts has been agreed, taking the total number working within the PCT area to four.

“These specialists will offer help and support to people with a range of different conditions, including motor neurone disease.”

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