Spend some time with me and you’ll notice something’s a little off. I don’t quite stand up straight. My neck bobbles a bit, especially when I’m nervous, stressed or tired.
That’s because I have dystonia, a neurological disorder that’s not unlike Parkinson’s disease but isn’t fatal. September is Dystonia Awareness Month and since I relish opportunities to educate people about the disorder and because communicating important stuff is what I do for a living, I thought I’d take this chance to tell you about it.
You can be forgiven for not knowing about dystonia. Even Bob Price, my fellow editor and friend of nearly 20 years, thought I was talking about an eastern European country when I floated the idea of writing a column about dystonia.
Dystonia affects about 300,000 people — men, women and children — in the United States and Canada alone, according to the Dystonia Medical Research Foundation. The foundation’s website explains it best:
“Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor.”
It can affect one part of the body or multiple ones. The causes include genetics, brain trauma, infection and stroke. There is no cure but there are a wide variety of treatments, including drugs, surgery and even Botulinum neurotoxin injections to temporarily weaken affected muscles.
Most of the time dystonia doesn’t affect cognition or intelligence. I’ve actually heard people with dystonia tend to have above-average smarts. I choose to believe that’s true.
The first thing to know about me is that I’m an unusual case. I used to have a severe form of the disorder but my symptoms largely vanished when I was 15. My doctors can’t explain it and have rarely seen it.
The story may have started when I was born with my umbilical chord wrapped around my neck, depriving me of oxygen for some alarming period of time. My parents feared medical repercussions but there didn’t appear to be any — until my fifth-grade teacher asked them why my right arm shakes when I write.
The pediatrician thought maybe I was a nervous child until about a year later when my neck — and eventually my entire upper torso — started pulling to the right. A pediatric neurologist immediately diagnosed me with dystonia. He said I probably suffered trauma to the basal ganglia of my brain, which controls movement, at birth.
We don’t know for sure if that's the cause, but nobody else in my family has dystonia.
For the next five years I walked around completely hunched over, my head pulled down to my hip. I took many different drugs and combinations of drugs to battle the muscle contractions. I had an electronic stimulator implanted in my brain at 13 to correct the messages being sent to my muscles.
Still, I was a very happy kid. My friends stuck with me, I was successful in school, my family life was great and I participated in all kinds of school and community activities.
I have never let dystonia get in the way of me living my life.
It did me the favor of largely going away when I was a sophomore in high school. That year I told my driver’s ed teacher it was ludicrous for me to have to take his class, to which he responded, “You never know.” Sure enough, over the course of about a month, the contractions faded away — mostly.
Ever since I’ve been able to stand up straight (well, pretty straight), keep my neck in check and do just about everything everybody else does: Go away to college, have a career and yes, drive a car. I do take medication and get injections every three months to calm the muscles that still act up.
So that’s my story with dystonia. Please spread the word. More awareness, more knowledge, more understanding will only help those battling the disorder. Like with a lot of the world’s problems.
For more information about dystonia, go to https://www.dystonia-foundation.org.
Christine Bedell is The Californian’s news editor.