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Motor Neurone Disease

People's stories

ALS- amyotrophic lateral sclerosis/MND aged 50-64

Ken - Interview 15

Ken - Interview 15

Age at Interview: 60
Sex: Male
Age at Diagnosis: 56
Background: Ken is a retired teacher, married with 3 adult children. Ethnic background/nationality: White British.

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.

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He worries about the physical and emotional burden on his wife and how she will cope in future.
Print We were saying about my wife and saying how it's very hard, and I'm finding it very hard to think that she'll be on her own for years, 20, 30 years. But the other thing is that it's very hard now. She gets absolutely exhausted. She's my carer day and night. If I wake in the night, she's the person who has to get up and get me a bottle so I can go to the lavatory and this sort of thing. If she wants to go to bed early, she feels guilty about sort of staying. Because I've possibly slept in bed during the morning. Because one of the things about being in a wheelchair is that you get uncomfortable if you're in there eighteen hours a day. So if I have to get up fairly early in the morning, I tend to bed slightly earlier. If I know I'm going to be up late, I tend to go to bed slightly later. She's always up, she's always running around, she's got to feed me, she's got to wash me, dress me. She hardly has any time for herself.

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