I think, the earliest I can remember of any issues that I was having with dystonia were just not being able to hold a drumstick or a mallet.
I used to be a marching band instructor for many years and as you get older you don’t practice as much, you start to lose your chops as they call it, and your ability to play. And that’s just because you’re not playing as much, and then I just had a difficult time actually holding on to the drumstick, it would just fall out of my hand as I was playing and demonstrating things for the students. And I never thought anything of it, again, I just thought it was me not practicing enough and so I kept practicing and it never got any better.
I spent what seems like an eternity searching online for symptoms that I was having. You know you jump on the internet or google or chrome or what have you, and you’d type in weird thumb and you’d see a bunch of things come up and you’d find tags in various articles that you want to explore further. Yeah I went down a pretty deep rabbit hole when I started searching online and trying to diagnosis myself because, in music, you are your own worst critic, and that proved to be the case when I was trying to diagnosis myself before my doctors could figure out what was going on.
I crossed it [dystonia] during the research but most of what I found were videos, cases and documents of people who were, and children, who were in their beds, their bodies all contorted because of their uncontrollable muscle contractions. At the time I was just having issues with my hand, just my right hand, and I came across something that was called writer’s cramp and I started exploring that a little bit more but, again, it really didn’t stick to me until the doctor started explaining the other symptoms I was having as everything was progressing through the whole diagnostic process.
My neurologist was saying that a lot of times, people with dystonia, if they are diagnosed with it later in life, it generally will stay where it was found, i.e. my right hand, but then as I started trying to teach myself to write with my left hand because I couldn’t write with my right, the dystonia found its way over to my left hand and so I gave up the goal of trying to write left handed. And as time has progressed the dystonia has found both of my feet so currently it’s in all of my appendages. Basically from my knees down and from my elbows down.
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