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Wendy - Interview 07

Age at interview: 62
Age at diagnosis: 57
Brief Outline: Wendy was diagnosed in 2002. She has problems with balance and memory and a tremor in her right hand. Roprinirole controls her symptoms well.
Background: Married to a consultant physician. 3 children, retired piano teacher.

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About six years ago, Wendy noticed that her arms didn’t swing. After seeing her GP, she was referred to a neurologist who thought she might have Parkinson’s but he told her that the only way to know for sure would be to let time pass. She was terrified and she had very little support or information. As a result she felt depressed for about two months but then a good friend suggested she contact the Parkinson’s Disease Society, and gradually the more she read, the more she was convinced that she did have Parkinson’s Disease. Reading about how an American teacher managed with Parkinson’ Disease stopped her being afraid and helped her to cope.

 

Wendy feels it is reasonable to be optimistic.

Wendy feels it is reasonable to be optimistic.

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I’m very lucky in that my symptoms are quite small at the moment. My arms don’t swing when I walk. I have problems with my balance. I have various different internal problems. But I can still speak. I can still walk. I can still with effort throw a dinner party. And I enjoy my grandchildren enormously. They wear me out but they wear everyone out. So that’s perfectly normal. The future no one knows but it is much more positive now than it was ten years ago. So I have everything to look forward to I think. 
 

Wendy had had symptoms for five years before she saw a neurologist who said she had to wait...

Wendy had had symptoms for five years before she saw a neurologist who said she had to wait...

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I first suspected there was a problem because my arms didn’t swing and that was about six years ago. And I didn’t do anything about it of course for a while. But eventually I spoke to my sister and she said, “Go and see your GP”. So I did and the GP said, “I think I’m going to send you to see a neurologist.

 

And I went to see a neurologist quite quickly. And I went alone which was a mistake I think. And he said that he thought it was possible that I had PD. But the only way to be sure was to let the time pass and let the various different problems emerge. So I came home shaking, absolutely terrified. And my husband didn’t want to know, bless him. I think that’s a male normal reaction. And so I coped with it initially without knowing what was wrong with me, afraid of what it might be and with very little support which was very difficult.
 

Wendy enjoyed reading a book written by an American woman who had rather similar symptoms and a...

Wendy enjoyed reading a book written by an American woman who had rather similar symptoms and a...

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I have two good friends and one happened to be a GP and the other is a practice nurse, whose husband has PD. And the GP friend said to me, “You need information, it is better to know the worst than to not know”. And so she put me in touch with the Parkinson’s Disease Association, who were very good. They sent me little bits of information as I requested them. They didn’t bombard me with information which would’ve been a mistake I think. And little by little I found out about PD, still having no certain diagnosis. But the more I read and the more I discovered the more sure I was that this was my problem.

The practice nurse friend lent me a book by an American who had had PD for ten years before she wrote it. And her circumstances were in some ways quite similar to mine, in that she had to give up teaching because of it and the emergence of her symptoms were similar to mine. But she was so positive, so upbeat, so “enjoy every minute” sort of person that she made me stop being afraid and helped me to cope with it. She gave very good advice such as see a physiotherapist, get some exercises to keep as fit as you can. And after a year I went to see the neurologist again and I said to him, “I want a diagnosis. I want to know. I don’t want to be unsure about what’s wrong with me”. And he said, “Yes I’m sure that you’re right. It is PD”. And that was five years ago almost exactly to the day. And I’ve joined the local Parkinson’s Disease Society. I’ve met some wonderful people and I think that being able to help them has helped me enormously.
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