Sylvia - Interview 25  

Sylvia - Interview 25

Age at Interview: 66
Sex: Female
Age at Diagnosis: 65
Background: Sylvia is a part-time book-keeper, married to an architect, with 6 adult children (including 4 step-children). Ethnic background/nationality: White British.

Brief outline:Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.

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She has been lucky to have a good life and happy family, so she doesn't think 'why me?' A vicar asked her if she was angry with God but she feels it's nothing to do with God.

 



I've got two sisters, and the younger one unfortunately has got Alzheimer's, which they think there might be a link, a genetic link. Because it's weird that out of three daughters one's got MND and one's got Alzheimer's. And my other sister said to me, when she lost her daughter this year to cancer, so she said, “Oh, why us? You know, it's the three of us.” And I said, “Well, why not us? You know, we had a wonderful childhood, and other people didn't. So you've got to think, well...” You've got to look at it like that, I think.

Do you ever stop and think, “Why me?” though? Does it?

I don't actually. Because as I say I have, I did have a wonderful childhood, and I've got a wonderful husband, a fabulous family, loads of friends. I've had some beautiful holidays. So I've been lucky. Obviously I would like to have got to my 80s, but you've got to go some time, haven't you? And... no, in fact I talked to a vicar and he said, “I bet you thought, 'Where's God?'” But I said, “It's nothing to do with God, is it? He doesn't give you these diseases. He teaches people how to cure you.” And I thought that was a funny thing for a vicar to say. He said, “I bet you felt like shouting at him, at God.” I said, “No I didn't. It's up to me and him, isn't it?”

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