Motor Neurone Disease (MND)

Ken - Interview 15

Male
Age at interview: 60
Age at diagnosis: 56

Brief outline: Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.

Background: Ken is a retired teacher, married with 3 adult children. Ethnic background/nationality: White British.

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Ken first noticed symptoms about 6 years ago in 2001. The first thing he noticed was a heavy, stiff feeling in his left arm when he woke up in the morning. Then he started to feel butterflies in his tummy for no obvious reason. He went to see his GP when he started getting cramps, but the GP did not think it was anything unusual. Not long afterwards he went back to the GP, because he was losing strength in the muscles of his right hand and could not operate the remote control for his car. This time the GP was immediately concerned and referred him to a neurologist. At the time, the GP mentioned it might be a trapped nerve, although looking back Ken and his wife wondered if he knew more than he was saying.

Ken was admitted for tests in the spring 5 years ago, and was told it was a clear diagnosis of MND. His wife was more upset at the time than he was. At first he did not want to know the detail of what to expect, but by the time they had a further consultation a week later at a specialist clinic he felt ready to ask more questions. He went back to work as a teacher, but by this time he was having trouble writing on the board in class, and very quickly decided to retire. His wife also took retirement. They decided to enjoy several holidays together while they still could.

Gradually his left arm also became weaker, and his occupational therapist provided arm supports to help him eat and use the computer. He found these really useful in maintaining his independence for as long as possible. His legs were also becoming weaker, and he started to need help getting up, but he could still walk independently until two years ago. Now at home they have a hoist, a lift and a wet room, and a special toilet which enables him to wash himself. They have had a car (a people carrier) specially adapted. He has a wheelchair which he can operate with his chin, and an infrared remote control he can use to operate electrical equipment at home, such as the TV and lights. He has found some useful voice recognition software which converts his speech into text.

At present his wife provides all his care at home, but she does get very tired. He has had one respite stay in a hospice, and they are considering getting more help in at home. Both he and his wife still sing in choirs, and he would like her to be able to continue to go out and sing even when he becomes more dependent. He has been generally very happy with the care and services provided, and has always found staff willing to answer any questions they can, but of course no-one can answer the question of what causes MND or why people are affected in such different ways. He himself wonders whether exposure to organophospates from farm work in the past had affected him, or possibly a period of stress and depression in his life some time ago. Ken is glad that in his case the condition has progressed more slowly than he originally expected.

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