Motor Neurone Disease (MND)

Stuart - Interview 05

Male
Age at interview: 62
Age at diagnosis: 53

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.

Background: Stuart is a retired electrician, married with 3 grown-up children. Ethnic background/nationality' White British.

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Stuart started noticing symptoms almost 20 years ago. When driving, his leg would start shaking and he would to move his leg around till it stopped. This happened on and off for some time. Two years later he got his foot caught in a ladder at work and he fell. He had great difficulty walking after that, and has been unable to work as an electrician since. Then about 15 years ago he started tripping and falling, and was sent for tests as a hospital in-patient. The consultant neurologist told him there was nothing wrong and he did not want to see him again.

He asked his GP to refer him elsewhere, and he had many appointments and tests. Eventually nine years ago he was diagnosed with MND - for him the relief of a diagnosis was so great that he burst out laughing. His GP, who gave him the diagnosis, said he might live for 5 or 6 years, but his consultant said he might only have months to live. Inspired by Stephen Hawking to keep his mind active, he has put his energies into a series of writing and local history projects, and runs a help page on a local community website.

Stuart feels they have had to fight for equipment and respite care, and his wife has had to cope with a lot on her own. He saw other people going through similar struggles when he was active in his local MND Association branch. More support needs to be provided for people at the right time and it should not be left to voluntary organisations to fill the gaps. He feels most clinical staff are excellent, for example when he spent time in a neurological rehab ward while his wife had a knee operation, but they don't always have the facilities and funding to do their job properly.

Two years ago Stuart developed diabetes. The hospital care when he was admitted for this was poor at times, and staff did not seem well prepared for caring for someone with MND. He was particularly unhappy with the way staff would take his personal wheelchair away from his bed without permission and use it for other patients around the hospital. 

His condition has worsened steadily, so he finds it difficult to get out in his wheelchair as much as he used to. The MND Association has provided him with a Lightwriter which he finds easy to use, and he jokes about the American accent. Stuart feels he has a full and happy life and is content with his life now. He chose not to take riluzole, and has no pain from MND. His message to others is that the diagnosis doesn't mean your life has ended. 'You can make motor neurone disease live with you, and not the other way round.' 'If you lose the ability to do one thing, think about another you can do.'

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