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Rage Against the Dopamine: Explaining Parkinson's to My Kids

How do you tell your kids about a disease like Parkinson’s?

“Well, darling, it’s like this: Mummy’s going to get progressively slower at moving, talking, thinking. Falling might be an issue and periodic bouts of choking, falling, and hallucinations. All whilst she’s dancing a jig to no music.”

Yeah.

My kids were 11 and 15 when I was diagnosed. To a certain extent, it was easier as they knew I had been experiencing some weirdness.” The eldest responded in her eminently practical way and started researching cures…a form of denial? Or perhaps acceptance. It’s hard to say, although there was some knock-on as her studies dipped and she struggled with her relationships for a time.

The younger one had a tougher time and still does. It was initially made extra challenging by a teacher telling her I was going to get dementia and lose my memories. My daughter came home distraught, aggravated by my apocalyptic anger.

But strangely, this turned out to be positive. It was an opportunity to talk about symptoms, outlook, and the future. The biggest lesson was never to assume anything! Children aren’t in possession of the same knowledge bank as we are: ensure they know it’s not contagious or that you aren’t going to drop dead suddenly. Mine wanted to how I got Parkinson’s. I spent a lot of time reassuring them that it was all manageable and they were not to worry. Mummy would be fine and cope.

The truth is I carry gut-ripping guilt that I could be burdening my children with this. This diagnosis is not something they can come along the ride for; no one can. Nor should they. I don’t want them to become my carers.

I want to retch when I see the flash of fear as I struggle downstairs, the just-in-case hand at my elbow. The anxious shouts

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