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 of, “Are you OK?” if they hear the smallest crash from the kitchen. I know they resist asking me to do certain things so as not to worry/tire/stress me. I hate it. I feel like I’ve stolen part of their childhood from them.

When I became a mother, I had no idea how hard and at times soul destroying it can be catering to tiny militant egomaniacs. How wearing the repetition of day-to-day parenting truly is. But it is also the best thing I have and will ever do. Those girls and I have been through everything together. We’ve navigated me becoming a single parent and worked as a team, bringing each other up and becoming a force of nature, together.

The youngest is 14 and in the throes of monster hormones, biting the hand that feeds and then sobbing uncontrollably that she loves mummy best of all. She has had a period of denying Parkinson’s. Raging once that I don’t look like I have Parkinson’s and how do doctors know I have it?

Turns out that she had been Googling and was presented with the usual old, bent man depiction of someone with PD. We need some new imagery. The mistrust of diagnosis is again something she had gleaned from the lack of definitive testing.

I’d love to tell her it was just nonsense and I’m fine, just slightly wacky. But it was a wake-up call I had been hiding some of the symptoms and now I had to be honest with her and myself.

The bravery and honesty my children show about this disease is the best support and love I could receive. They trust me to cope, or to be honest when I’m not and I trust them to do the same.

Perhaps we are in this together after all.