Every disease seems to have some kind of celebration these days, some whole months, some weeks, and some days. Thursday, for example, is, I think, “Infected Hangnail Day” and you should wear something of an angry red color to show solidarity.
Essential Tremor warrants a whole month, I guess, probably just because the International Essential Tremor Foundation says so*. But here’s why I care:
My name is Lori Duff, and I have Essential Tremor. Essential Tremor is a fairly common, mostly harmless neurological condition that no one has heard of, and most people never bother getting diagnosed with. I call it the shakeys. My Dad has it, too. He never bothered naming it or getting diagnosed with it, and I was almost 40 before I stumbled on a magazine ad (in a March issue, of course) which made me say, loudly and out loud, “That’s It!” in the waiting room of a doctor’s office, the only place I ever read magazines.
The condition is more annoying that it is debilitating. Only the most greatly affected have trouble keeping food on a fork or spoon or lose fine motor control to such a degree that they can’t tie their own shoes. I can sit still and do most anything, even if it does take me a few tries. But whenever I engage the muscles in my hands, there is shaking. I’ve lost the ability to thread a needle or work a small clasp on a necklace. The older I get the worse it gets. It isn’t a lack of control or nervousness, which is what it looks like. It’s more like the electrical signal from my brain that tells my fingers to clench, stutters. Clench-unclench-clench-unclench-clench-unclench in a rapid cycling of several times per second.
Lately, it has spread to my head, and I’ve been accused of shaking my head “no” at people before I’ve heard what they’ve had to say. (Mostly, it is my husband who accuses me of this, and maybe I am subconsciously shaking my head “no” at him before I’ve heard what he’s had to say because my brain is just trying to cut to the chase.) It’s actually kind of fun at work when someone accuses me of this, because then I can cut them down with a, “I’ll thank you not to make fun of my movement disorder. I’m very sensitive about it.” I’m not, but it humbles people who say rude things.
Interestingly enough, the only ‘medicine’ that makes it better is alcohol. After a few tequila shots, I am steady as a rock. There is serious research going on about how to take the chemical properties in alcohol that help and turn them into medicine that will work but not get you drunk.
But, I can’t (or won’t) do tequila shots when I’m working or driving or doing anything that requires me to do anything more complicated than belt out embarrassing karaoke, so I take Primidone. Primidone works a little bit, but I still can’t read a piece of paper that I am holding in my hand because it shakes faster than my eyes can track.
Most of the toes of most of my dress shoes have coffee stains on them where I have shaken a little bit out of my cup. I spill a lot. I drop things a lot. I’m naturally clumsy, and this just makes things worse.
I’m told by my neurologist that, based on the rate of worsening of my conditions, at some point in my life I am probably going to have to have electrodes put into my brain to shock it into submission. I do think it is theoretically cool to have a bionic brain, especially with controls on the outside. However, the thought of someone drilling into my skull while I am conscious (this kind of brain surgery is done while you are awake so that you can ‘test’ the equipment before they plug the whole back up) makes me want to just hold a flag as a prop and pretend like I’m waving it all the time in a patriotic gesture instead of shaking. I can’t imagine the sound the skull saw would make without wanting to hide in terror.
So for now, I’ll just sit here quietly shaking, and typing everything because I am past the point where I can read my own handwriting.
For more information about Essential Tremor, visit the International Essential Tremor Foundation at http://www.essentialtremor.org/
- After I published this article, the IETF contacted me and corrected my guess about the origin of March being Essential Tremor Awareness Month: “In 2010 Cathy Rice, the previous executive director of the IETF, worked with our local Congressman Dennis Moore to pass a HB resolution #1254 designating March as National ET Awareness Month. ” So there. It’s an act of Congress, which means, I think, that we should all take off work.
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