Stories

Living with Parkinson’s disease: Alison’s story

January 19, 2023

When Alison was diagnosed with Parkinson’s disease, she was devastated, angry and embarrassed. To her, Parkinson’s is a disease that strikes older men, not fit and active 50-year-old women like herself. And while she is still angry, she refuses to let Parkinson’s take control.

Transcription

When I went to the neurologist for the first time, I went there for, I didn’t think, I didn’t think I’d get a diagnosis. I didn’t think of any tests or anything. And he ran these simple tests, and he just turned to me and said, ‘You have Parkinson’s.’

I was by myself and I was totally devastated. So, I immediately called my partner, Phil, and then I left the doctor, and the first thing I did was I went for a run.

I was embarrassed about it because, as far as I was concerned, it was an old man’s disease. And here was I this fit 50-year-old struck with this old man’s disease.

And I was initially, I was very angry, very angry. It took away my life, but I have to make a new one.

Every time I tell the story it’s hard because you think of the life you had before and you’re never going to be the same again. Well, only my brother knows; I haven’t told my parents. I haven’t told them, and I won’t tell them because it’s too much for them to know. They don’t need to know.

So, since I was diagnosed, I’ve taken up boxing and Pilates. So, there’s the two methods of connecting with my body.

It’s difficult to describe. I mean, just imagine not being able to walk. Try and send a signal to your legs, and they don’t respond. They don’t, literally don’t respond.

I mean, I’m a control freak. I don’t doubt that. Parkinson’s tries to take away that control, and I can’t let that go. So, I need to keep that going.

Looking ahead is very scary. So, I keep trying to not look ahead. I keep trying to do stuff that could keep me balanced and keep me going and keep me on the plateau I am right now, because I don’t want to think about the future.

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