This excellent column was written by Beka Serdans, a nurse who developed dystonia. Even though my dystonia is much less noticeable than Beka’s, it has been (almost) equally frustrating for me to find treatment that actually works. Even though we have very different forms of the disorder–Beka’s dystonia affects her neck and gait, where mine affects my left hand and foot (parts of my body that were temporarily paralyzed following a stroke)–as I read the piece, I found myself relating quite a bit to her situation.
I nodded knowingly as I read about her avoiding sitting in seats reserved for the disabled on public transportation, because–goodness knows!–she wasn’t one of them, was she?
I could totally relate as she recounted the seemingly endless search for viable treatment options–the alternative therapies, the occupational therapies, the splints, the meds and so on. Botox, so far, has worked for me . . . a little, but not completely to my satisfaction. But finding the right dose and the right places to inject it has been a complete trial-and-error affair that’s taken years to iron out–and even so, it’s not perfect. I’m currently experimenting with the use of kinesiotape (thank you Olympic swimmers, for enlightening us about this!) on the opposing muscles to those that clench in my arm, which has helped a little–at least, while the tape lasts. We’ll see how that goes. (Deep brain stimulation is an option no one has recommended and one to which I’d rather not resort.)
I also had to smile at her response, when people asked why she wore a cervical collar to counteract her twisting and spasms. “Stiff neck,” she would say, though the real answer was much more complicated. But if you tell people you have dystonia, most of the time you’ll get a blank stare followed by, “What’s that?” Then you have to explain it. And isn’t having dystonia enough work as it is?
Which is why so often, when I wear a wrist brace to counter the constant clenching in my left hand from dystonia, if people ask, “Carpal tunnel?” I’ll often say, “It’s a long story” and leave it to their imaginations.
However, lately I’ve been trying to just tell them. I’ll simply say, “I have a movement disorder. It makes my hand clench all the time.” People are often surprised, alarmed even to hear about this. If I don’t wear a wrist brace, my affliction often goes unnoticed. (Which can be a blessing and a curse.) When I complain of pain, fatigue or discomfort, I often hear others say, “Well, you look just great!” Which is nice, but not much consolation to someone who’d like to feel great again.
Why do I tell them? Mainly, because I feel like it must be told. People need to be made aware of dystonia. And if those who suffer from it don’t tell them, who will?
Anyway, I have corresponded with Beka on previous occasions. She founded Care4Dystonia Inc., “a nationwide community-based health organization dedicated to Setting the PACE: Patient Care, Awareness, Collaboration and Education for the dystonia community and the general public.” And if you’d like, you can order a dystonia awareness T-shirt from her organization (I ordered the one on the right), so you can spread the word about the existence of this disorder/need for a cure and look really cool at the same time–what could be better?
I am gratified for the efforts of organizations like Beka’s, as well as the Dystonia Medical Research Foundation, which funds research on the problem and did a lot to promote a documentary called “Twisted” (made by dystonia sufferer Laurel Chiten about three other people with the disorder), and the Bachmann-Strauss Dystonia & Parkinson Foundation, which recently produced a public service announcement about dystonia.
For my own part, I’ve tried to write about the problem when I can. But somehow I felt like I had to do more. So, I’ve started organizing a dystonia ride through a local Harley dealership in my area. I’m hoping that, with support from the HOG chapter at the dealership and other chapters in the area, as well as the dystonia support groups in my area, I can make this a success. This will be an “all bike” event, not just Harleys (I’ve even heard of rides that allowed 4-wheelers along with the 2-wheelers, so that’s a possibility, as well).
Wish me luck!