Category Archives: dystonia

Dystonia. It Sucks.

Today has been a bloody long day, and it was the sad climax of what have really been five, long, bloody months.

The short story: I have dystonia. Specifically, cervical dystonia, tardive dyskinesia, and spasmodic torticollis. It causes my body, pretty much the whole thing but more often just my shoulders, neck, head, and sometimes face, to twitch, flail, or spasm. Ordinarily, I’d say it’s not as bad as it sounds and I’m more trying to impress you with my mad clinical vocabulary, but I’m exhausted mentally and physically. So today, I will say that it sucks. I was diagnosed four years ago, but it took a little more than ten years to get a proper diagnosis. Do the math and you’ll realize I’ve been dealing with high-powered, sometimes violent muscle spasms and twitches for 14 years.

I am lucky enough to live in the United States of America, close to some of the best hospitals in the world, and thus some of the best medical minds on the planet. Yet for all that, I’m also lucky enough (if you would call it that) to have the third most common movement disorder behind essential tremor and Parkinson’s. That makes it sound like this is something that a lot of people have and that there must be a lot of research and treatment for, right? After all, look at all the famous people we know with Parkinson’s. Michael J. Fox is perhaps the most outspoken, but others like Muhammad Ali, Johnny Cash, Estelle Getty, and St. Pope John Paul II also suffered from it. However, dystonia affects only about 250,000 people in America. Only quarter of a million people out of the 313.9 million in the country. I don’t even want to try to figure out what the percentage is.

What made today the climax? I met with two new neurologists, one of which was also a movement science expert and one of the top dystonia specialists, if not the top. I learned that despite being among all these medical geniuses, there is still no magic pill, no surgery, that can fix me. I must continue the slow, plodding route that I’ve been traveling on, coming off one drug in order to try another. I learned that this upswing in symptoms I’ve been dealing with for 5 months is “normal” and that flare-ups will occur at various, unpredictable intervals during the course of my life. I learned that the one surgery that is often effective for Parkinson’s, though approved by the FDA for dystonia, isn’t often attempted by neurosurgeons because the area of the brain that triggers the spasms can’t be pinpointed – they’d have just as much luck with a blindfold playing “Pin the Leed on the MRI”.

Needless to say, it was a bit disheartening.

Who am I kidding? It was a lot disheartening.

I admit, I cringe a little bit when I see various ribbons and signs for walks to support things like diabetes, heart disease, and cancer. All terrible, terrible things in and of themselves, but I hope the patients and their families realize what a thing they have there… community. Someone who knows what it is like to have to deal with X, Y, and Z on a daily basis. Even if someone doesn’t deal with it daily, there are enough sufferers and enough awareness campaigns that everyone knows something about diabetes, heart disease, cancer, autism, whathaveyou.

When there are only 250,000 of you around the country, camaraderie is like looking for the needle in the haystack. Oh, there are online forums and support groups, but words on the page only go so far. Who knows that better than the writer? Do you know what it’s like to know that by not thinking about where you sat, you knocked yourself unconscious and caused your own concussion? In class? At age 17? That in front of your friends, you bloodied your boyfriend’s nose at the same age because he was standing next to you? Can you count the number of things you’ve thrown, or kicked? How many bruises you’ve accumulated? The way professors get annoyed because you’re making an awful lot of noise during their lecture, because you can’t stop moving?

Or even to have someone know what the heck dystonia is without having to launch into the explanation of what it is.

In my more sensible moments, when I can ignore the larger troubles of the world, I dream of stillness. Perfect stillness. 

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