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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.

Comments

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(Anonymous)
Jan. 11th, 2006 11:50 pm (UTC)
Jenny said...

Good luck! You might try a test dose over the weekend, when you don't have any appointments or public appearances. It might, for example, make you incredibly sleepy, or speedy, or something.

8/04/2005 06:35:06 PM

Plantgirl said...

As someone with an "invisible" disability, I also spent most of my life thinking I wasn't really disabled. But the fact is that I'm dependent on drugs, not just as temporary life savers, but constantly, to minimize my disability. It took me a long time to accept that fact. To be honest, I still struggle with it sometimes. But since these are drugs where no one is quite sure just how they work, drugs that intricately screw with the chemistry of my brain and sometimes have a potential for dangerous side effects (such as seizures), I have a lot of empathy for your fears. ::hugs:: I hope the Haldol works for you.

I wonder if it's also possible to re-learn your driving style? It would probably take months, but over time you might manage to make cumulative changes?

8/04/2005 10:38:10 PM

Thida said...

Yeah I'm going to test drive Haldol first. We don't have much going on tomorrow.

Thanks for sharing your story, Plantgirl! It's good to know I'm not alone. I just started wearing Smart Gloves, which seem to readjust my driving some. My doctor suggested biofeedback, which I'll prolly look into when I have a little more time.

8/06/2005 09:22:36 AM

Jenny said...

Depression for me has always been life-alterting. I wanted to work in academia, but had to stop because I couldn't take the stress. Similarily, I'd like to go back to working in software development, but I don't think I could hack the stress. My world keeps shrinking because I collapse and become dysfunctional under stress, and smaller and smaller things are stressful, even though I become better and better at stress reduction. Earlier in my life I did a lot of mourning and had a fair amount of anger about depression. Now, I'm more accepting of my condition and limitations. (It helps that I'm medicated. ;-))

8/07/2005 05:08:22 PM

Jenny said...

If you're scared of Gabitril, you might try just taking a healthy dose of GABA as a supplement, which you can get at health food stores. I have some you can use, too. It's a very calming supplement. Who knows?

8/07/2005 05:11:17 PM

Thida said...

Thanks for the suggestion about GABA. Yes,I'd like to try some please.

I think I'll write a post about handling stress.

8/08/2005 02:23:38 PM
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