Motor Neurone Disease (MND)

Shyam - Interview 35

Male
Age at interview: 80
Age at diagnosis: 80

Brief outline: Shyam was diagnosed with MND about six months ago (2006). He has difficulty walking and uses a wheelchair. His speech is slowing down and his voice is changing.

Background: Shyam is a graphic designer/book illustrator, married with 1 adult daughter. Ethnic background/nationality' Indian British.

Audio & video

Shyam noticed that he was walking strangely after returning from a trip to India last year (2006). His feet felt weak and he had a couple of falls. His GP referred him to a neurologist, who quite quickly diagnosed motor neurone disease.

Shyam did not know anything about the condition, and would prefer not to find out much detail about it. He did not feel very upset about the diagnosis, and feels it is better for professionals to give people positive messages and encouragement, rather than emphasising the negative side. His philosophy is to accept the condition like a guest in his body' he must treat it with respect, as he would treat a guest in his home, but the illness must also behave well, and then they can get along together.

The most difficult thing to cope with practically has been falls, and needing help to get up again. Otherwise he feels peaceful and calm, and does not want to think about the condition from day to day. The only thing that saddens him is feeling he is a burden on his wife, and he thinks it would be helpful for her to meet other carers. He too is curious to hear about the experiences of other people with the condition, especially if their symptoms also started in the legs. The only support group meeting they have been to so far did not give them much opportunity to talk to others. 

Shyam has hydrotherapy once a week, which he enjoys. He has had some equipment provided at home, but had to pay himself for a stairlift. He uses a wheelchair on one floor of the house and needs another on the other floor where the bathroom is, so that he can get to the bathroom quickly enough from the stairlift. He thinks patients need to be given more choice and information about what equipment is available and what they would like. His message to other people is to live each day as it comes and not worry about the future. 

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