DYSTONIA IS NOT A COUNTRY

5/24/2018 by Linda Stober Opp

Dystoniacl.jpgDystonia is not a country, even though my word processor wants to change “dystonia” to “Estonia.” My confidence in technology is reduced. But I digress before I begin, so here goes.

It started with a head tremor, almost twenty-five years ago. Then about a decade ago, a neurologist told me I had essential tremor. There are medications to control the tremor, but they come with a menu of side effects that I'd rather not deal with. So I went on with life, mostly unconcerned, but sometimes embarrassed about the tremor, especially when people would ask if I have Parkinson's disease, or worse yet, assume that I have Parkinson's. I don't.

Three years or so ago, the fifth finger on my right hand began curling inward, most noticeably when I played the piano. It would curl up and slide off the key. I pretty much ignored it and used the four remaining working fingers. Then the curling spread to my fourth finger. Again, I foolishly ignored it and used just three fingers. I had to compensate when typing, as well. I should have gone straight to the doctor, but I knew it would involve referrals and tests, and life was busy. Maybe I thought it would get better.

I finally reached the point of total frustration with having only eight usable fingers. I quit playing the piano in public because it was too scary and unpredictable, and I was too limited. But not playing left a pretty big hole in my life. An important, life-giving part of me had gone missing. So it was off to the doctor, who sent me to an orthopedist, who referred me to a neurologist. He's a really good neurologist, and I had to wait six months to see him.

“Make sure you tell the neurologist about your tremor,” said my husband on the eve of my appointment. “I think the tremor and your hand issue are related.”

I rolled my eyes. “He's a neurologist. He's going to notice the tremor,” I said. “And I don't think my hand issue and the head tremor are related.” Turns out they are.

The neurologist quickly evaluated my symptoms, and told me he was pretty sure I have dystonia, a progressive neurological condition characterized by involuntary muscle contractions. It can't be cured, only managed. My head tremor is called cervical dystonia. The finger curling is called focal dystonia, or musician's dystonia, because this particular type is most often found among violinists and pianists. It seems that we musicians who are prone to dystonia experience a change in the plasticity of the brain, brought on by asking our fingers to do things they were probably never intended to do. The brain begins sending wrong signals to the muscles, which makes them cramp.

I was sent to Stanford Medical Center, the Mayo Clinic of the West, to see yet another neurologist to confirm the dystonia diagnosis. A five month wait for this one. In the meantime, although he was convinced of his diagnosis, neurologist #1 ordered a battery of tests to rule out MS, Parkinson's, stroke, Wilson's Disease, and a pinched ulnar nerve. There is no test for dystonia. It's diagnosed by ruling out everything else, and by observing symptoms.

All these months spent waiting, waiting, waiting were wasted time. My piano lurked silently in the living room, like an enormous dead animal. I considered selling it and just moving on.

The Stanford neurologist confirmed the dystonia diagnosis. The good news is that though dystonia is progressive, mine is comparatively mild, and progressing slowly. I was prescribed medication to control the head tremor, which I tried and quickly rejected. It slowed down the tremor, but my head and neck ached constantly. These side effects are common for women my age. I was prescribed a different medication, but after reading the list of possible side effects for women my age, I've decided to leave it in the bottle. One of the side effects is confusion. I consulted my schedule, looking for a day or two when it would be safe and convenient for me to be confused, and came up with nothing. Sigh... I guess I'll keep the tremor, for now. I'm looking at other treatment options. One of them is botox injections, which has its own set of problems.

If dystonia isn't a country, it's definitely a place – a place of frustration and a place of loss. But there's more good news here. The appointment with the Stanford neurologist opened the door to Stanford occupational therapy, where the therapists have experience with musician's dystonia. My brain may be sending wrong signals to my fingers, but the brain can be retrained. Every two weeks I meet with the therapist. In between appointments I do tendon exercises. I play the piano slowly, and type even more slowly, while wearing finger splints to keep my fingers at the correct curvature. I'm required to watch my hand making the right movements, because the brain is trained by the eye observing the fingers in their proper position.

I'm seeing progress! At the end of my practice time each day I remove the splints and check to see how my fingers do without them. More and more they do what they're supposed to do, sometimes not. But the fact that those two fingers are transforming from curled, useless lumps to being usable again is miraculous to me. I never imagined it would be possible.

I have a lot of work ahead of me, and I may never fully regain what I once had. Brain-training may well be part of my routine for the rest of my life. When I walk away from the piano or the laptop, having made progress, I feel those two fingers curling again, rebelliously, as if to say I am not the boss of them. My therapist tells me the brain is stubborn, and doesn't change without a fight.

Dystonia is therefore also a place of learning patience. I miss the music. I miss being competent. I miss playing in public. I miss the me I used to be. Maybe dystonia is a country, after all, and I'm a permanent resident. But I'm thankful for science and knowledge and brain-training, for neurologists and therapists who can give me tools for living here. Bless them.


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