I have a disability. Should I experiment with drugs?

You may say, well duh, it says right there in your blog description that you have a movement disorder. However for me this is a new act, a coming out, if you will. I have a rare esoteric movement disorder, myoclonic dystonia. My head, arms and hands jerk randomly sometimes when I perform small motor activity.

For a long time I felt like I didn't have a right to "complain" ie talk about my disability when others had it a lot worse. Thing is that all my life people have assumed I'm retarded, because I have myoclonic dystonia. Sometimes they treated me badly, and sometimes they treated me like a child. And I didn't really get it until my husband C explained this to me one day a waiter totally ignored me and insisted on getting our order from him. Before that I had unconsciously internalised that I was stupid on some level. Now recognizing this I just feel a lot more free to stand up and say I have a disability. Or rather jerk, and say I have a movement disorder.

For the most part myoclonic dystonia does fall into the "bothersome" as my neurologist puts it, and annoying and never life-threatening. It is at times painful when I whack myself and the way I drive is slowly destroying my wrists. I lock my wrists and grip the wheel far too tightly for no good reason other than conditioning. I have had the usual share of fender bender and minor accidents, but they were all due to my inattention; no accident in 20+ years of driving due to my movement disorder. And it's not because of my wrists.

I want to say myoclonic dystonia is not life-altering, but that isn't true. At one point I considered becoming a doctor, and took a bunch of premed classes. But I didn't because with my disability, it was too high a barrier and I didn't want to become a doctor enough to overcome it. But until I got all this straight in my own head, I had this idea that disabled people were blind or were in wheelchairs. I was half disabled if you will. Like I'm half Burmese.

But the driving thing is changing my life. I can't drive farther than 10 miles at the moment, because my wrists just can't take the abuse. So I'm willing to try drugs again. For the first time in three years, I visited a neurologist last Wednesday. I've been putting off blogging about it or dealing with it. Since myoclonic dystonia is so rare, the description is symptomic. Neurologists have little idea what causes it. So when I take drugs, I'm performing experiments on my own brain. Try this one, they say. Let's hope it doesn't mess up the rest of your brain.

The first drug I tried made me burst into tears in grade school. The second I tried made me bipolar. I ran around campus like a madwoman then I'd crashed and I couldn't get out of bed for days. Drugs have improved greatly since then. Scientists have made leaps forward understanding brain chemistry in general and movement disorders in particular. In fact the name movement disorder and my diagnosis was invented by the neurologist who saw me at age 16 when I had my second bad drug experience.

Still I'm terrified to try new drugs. Even though since then I've tried a series of drugs, which, good news, don't affect my mental health, bad news, don't do anything for myoclonic dystonia either. The latest one I'm to experiment with is Haldol, which I know is also prescribed for mental patients. But it also blocks dopamine and can help with Huntington's chorea. Now I'm questioning my own sanity to try this drug. "It's only a pediatric dose," my neurologist reassured me. But the alternative he offered Gabitril sounds even more scary with its risk of causing seizures. Very very minor risk, but I'm still scared.

And I have to keep driving to take Little T to his myriad medical apts. So Haldol, it is. My neurologist suggested taking 1/2 hour before driving. I have no more driving today, but I will make a mental note to fill my prescription before Monday when I have to drive Special K to gymnastics. Logically I know that if he's suggesting I take it before driving that it's basically harmless. Wish me luck.