Motor Neurone Disease (MND)

Paul - Interview 09

Age at interview: 58
Age at diagnosis: 56

Brief outline: Paul's diagnosis of progressive muscular atrophy was confirmed 2 years ago (2004) after several years of leg pain and weakness. Now unable to walk and he has limited arm movement. Uses a ventilator, but his speech is not affected. He worked until 6 months ago.

Background: Paul is a retired university IT specialist, married with 2 children, aged 17 and 14. Ethnic background/nationality' White British.

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Paul first noticed symptoms about four and half years ago, especially pain in his legs and difficulty walking. He saw his GP a few months later, who at first thought it might be spinal stenosis (compression of spinal cord and pressure on nerve roots). A year after his first symptoms began to appear, he was referred to a neurologist, and at this point a provisional diagnosis of peripheral neuropathy was suggested (damage to peripheral nervous system).

As Paul's muscle weakness got steadily worse, the neurologist began to think it could be MND and a diagnosis of the progressive muscular atrophy form of the condition was finally confirmed just over two years ago (2004). By this stage Paul was using a wheelchair. He had already done a lot of research on the Internet and thought to himself it might be MND, so he was not that surprised by the diagnosis.

His employers were supportive in helping him stay at work, including providing voice recognition software for his computer, and the Access to Work scheme paid for taxis to work. He was also able to carry on singing with a local choral society until a few months ago, and feels it is important to keep doing normal things as long as you possibly can.

About six months ago Paul decided to stop working and take early retirement, after he caught a virus and had to spend several days in bed. He finds that every time he has to spend time in bed or in hospital, his muscles get significantly weaker. The combination of reduced mobility and increasing breathing difficulties made him feel it was no longer realistic to work. He now uses a ventilator; initially this was just for night time, but he now uses it during the day as well. His speech remains unaffected, and he is able to eat and swallow, although has to be careful about eating because of his breathing difficulties. He takes riluzole, although he is uncertain how far it has benefited him. 

Paul has a live-in carer and a night-sitter. A district nurse from his GP practice visits once a week. He feels it is especially important to have plenty of support in place so that his wife does not have to do everything and they can keep as normal a relationship as possible. He advises people to think ahead about what practical arrangements they may need to get in place to make the most of their life.


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