Motor Neurone Disease (MND)

Peter - Interview 38

Male
Age at interview: 56
Age at diagnosis: 53

Brief outline: Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.

Background: Peter is a retired civil servant, married. Ethnic background/nationality' White British (Polish origin).

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Four years ago, in 2003, Peter noticed his right hand started to shake and his grip weakened. For many years before that he had a tendency to trip over and some weakness in his arm. At the time he just thought he was clumsy, but looking back he wonders if it was connected with MND. At first he thought it might be Parkinson's, and went to see a neurologist later that year. In January 2004 he was told it was MND, and a few months later when further results came back he was told it was 'atypical'. He believes this is because symptoms first started in his arms, although this has never been fully explained to him. Peter and his wife were completely shocked by the diagnosis and cried most of the night. The neurologist told him it could cause total paralysis, but Peter was even more shocked when he found information on the internet that it was a fatal condition. In some ways he feels it was better to find out some of the information gradually, rather than all at once. 

By the time of diagnosis, Peter could hardly use his right arm. His employers wanted to help him stay at work and he used arm rests to help with the computer. However, after an accident in summer 2004 when he tripped and broke his thumb, he had to take time off. He hoped to go back, but by September his arms were so much worse he had to retire on medical grounds. This was very disappointing as he enjoyed work and being with his colleagues. Over the next 12 months his legs became much weaker and by the autumn of 2005 he needed to use a wheelchair all the time. He decided not to take riluzole because of the potential for liver damage. He uses a nebuliser to help his breathing as he suffers with phlegm and finds it difficult to cough properly.

Peter's attitude is that 'doing nothing is not an option' and he tries not to think too far ahead about the condition. He remains active in a local political association, and tries to get out as much as possible, for outings to the countryside or meals in a restaurant or pub. He receives disability living allowance, and has had good support from the local social service department in obtaining aids and equipment such as a hoist and commode. He himself pays for a live-in carer and a nurse who comes six days a week, so that his wife does not have to cope with his care on her own. He has also bought a computer with voice recognition software so that he can dictate text into it. 

He has been for tests with a specialist in Germany who diagnosed that he had Lyme Disease. Peter's family is originally from Poland and he has been on many walking trips in parts of Europe such as Poland and Germany where ticks carrying Lyme Disease are common. He wonders if Lyme Disease may in some way have triggered MND, but has been surprised at the way doctors in the UK have been unwilling to discuss this with him. He feels not enough information is being routinely collected from new patients about their lifestyle and health history which could help identify possible causes to investigate. He also feels more needs to be done to give patients positive, practical advice for living with the condition.

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