Focal Dystonia, Part 5: The Course of the Disorder in 2019–2021 — From Five to Zero

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Another continuation of the series of articles on focal dystonia, this time briefly mapping the years 2019-2021. Gradual further deterioration until peak failure in May 2021.

Focal dystonia, or what can happen. Graphics: Michal Král
Focal dystonia, or what can happen. Graphics: Michal Král

In September 2019, I played my last concert as Betwind's bass player and had to stop performing for good, unless a miracle came along. During that performance my hand hurt unbearably, and finding the strings was more than difficult. When I later listened to the recording of the performance, surprisingly, you still couldn't hear anything wrong in my playing. But that very evening I knew I couldn't perform any more.
Anything I tried to do with my right hand brought on a spasm. I could only bring my hand towards an object if I clenched it into a fist. When I tried to open it, my wrist twisted and my fingers extended outwards in a spasm. I simply couldn't grasp anything. Eventually, even thinking about grasping something triggered a spasm. In guitar lessons, I could only play with my thumb, resting my other fingers on the first string or the soundboard. It was hardly what you could call playing.
The Covid years of 2020 and 2021 brought many other worries, and my worsening right hand was no longer at the centre of them. I was also getting used to doing everything with my left hand. I had begun treating it as an established fact that I probably couldn't change.
In February 2020, I began playing the trumpet. After some time, it brought a simple musical joy back into my life. Here was an instrument I could play without restrictions, because a trumpet can be operated with just one hand. Playing it with the left hand is admittedly unusual, but I didn't really have a choice.
Things reached a kind of dystonic peak in May 2021, when I could no longer use my right hand at all. Playing the piano, drums, clarinet, flute or guitar was out of the question. But I also couldn't turn a door handle, pick up a cup, hold cutlery, tie my shoelaces, lather my hands or clap. The limb was simply attached to my body, almost as if it were there for decoration.
I remembered an article I had read about ten years earlier. Someone had described something similar, and it reminded me of my own condition. I searched for it and found it; you can read it here.
There were several links below that article, which I explored. One name caught my attention: David Leisner. I looked into his story in detail and watched his publicly available videos. The key idea I took away was that overcoming the disorder might be possible if we started differently, started again and found the right approach. Whatever that might involve, one thing was clear: I wasn't going to give up...