Motor Neurone Disease (MND)

Harry - Interview 43

Male
Age at interview: 73

Brief outline: Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.

Background: Harry is retired, married with 3 adult children. Ethnic background/nationality' White British.

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Harry's wife began finding it difficult to speak nearly three years ago (2004). She had tests at their local hospital, and it was suggested it might be motor neurone disease, but there was no definite diagnosis. Their daughter knew someone who worked in a specialist MND clinic and they were referred there. The neurologist there told them it was MND. Although it was a shock, they were relieved to have a definite diagnosis and to be able to start getting specialist help in place. They have been very pleased with the services provided by the specialist clinic, but it is a long way from their home and they are thinking they may need to get more local support.

Harry's wife is now unable to speak, and uses a combination of signs and writing on a small white board to communicate. She has a lightwriter but finds it frustratingly slow. 

Her symptoms have progressed fairly slowly. She began to have difficulties swallowing and has a PEG fitted. The PEG has been replaced several times because the tube has perished. The hospital staff have tried to investigate why this keeps happening but have not been able to find an answer. 

More recently, Harry has been worried that his wife's symptoms seem to be progressing more rapidly. Increasingly she finds it hard to keep her eyelids open and sometimes has to hold them open to see. She has had a couple of falls in the last few months, and he thinks perhaps her mobility is starting to be affected. He had previously believed it would not affect her arms and legs but now realises this can happen. She now has an emergency alarm to carry with her. Gardening has become more of a problem as she loses strength. She also gets very tearful and distressed, partly because of the difficulty of trying to communicate. 

Harry has been looking after his wife's business, and because he wants to be there to look after his wife as much as he can, he has put most of his own interests on hold. He feels sad that she can no longer enjoy things like sharing a meal together. Dealing with the uncertainty of what will happen in the future is very hard. He worries about how he will look after his wife as her illness progresses.  He finds it difficult to talk to professionals about his worries and feelings, but feels lucky that he has a very supportive family. 

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