Dystonia Dystopia

In 2008 I ran the Boston Marathon, which technically is the Boston Athletic Association Marathon. You don’t get one of these medals unless you cross the finish line. 🙂

BAA 2008 Medal

In 2009 I was in the middle of a training run when a tendon in my right ankle decided it didn’t want to participate in the marathon. So when I was at the starting line, instead of being a participant I was merely a spectator. The elite women took their mark, and seeing Kara Goucher I suddenly didn’t mind being a spectator.

BAA Marathon 2009
Kara Goucher, BAA Marathon, 2009

Kara finished third in the race, but that isn’t important to this post. On February 8th, Kara posted this distressing news on Facebook.

For the past year I have been quietly battling for my health. After a fall in December 2020, I had a hard time staying on my feet while out running. It felt like I was slipping and it was scary, I’d throw my arms out for balance.

She went on to say …

…a neurological movement specialist… diagnosed me with focal dystonia, for me runners dystonia. I started a Parkinsons medication and slowly improved. I could walk normally and run on gravel surfaces or my treadmill. But running on a road or a sidewalk would cause me to be pulled to the left and slip.

I had never heard of Runner’s Dystonia until reading Kara’s Facebook post. On YouTube, an M.D. specializing in M.S. commented on Kara’s condition.

Beaber didn’t pick up on what stood out immediately to me. Parkinson’s medication helped Kara. She doesn’t say which P.D. med, but the fact she was able to walk after taking it is very telling.

I’m obviously not a physician, but I have a lot of experience with someone who has Parkinson’s Disease. I know for a fact that specialists can misdiagnose Parkinson’s or a related case, especially in women. Rather than having a moment of Sherlock Holmes insight, they diagnose by process of elimination and still get it wrong.

…losing running in the way I love it, is something I’m struggling to accept. People have said I’m addicted to running and they are right. I loved running before I knew I was good at it. It made me feel alive, to push, to feel my lungs expand.

This is heartbreaking. I’ve never been more than an average running, but I know the feeling. I’ve never understood the idea that being forced to run is a form of punishment. My first memory of enjoying running just for the sake of it goes back to age six.

Since retiring, I’ve averaged 4,000 miles/year driving. In my running heyday I averaged 2,000 miles/year on foot. Having been forced by my ankle to greatly reduce my running distances, my very sympathetic thoughts are with Kara, along with the hope she that isn’t suffering from a progressive and irreversible condition.

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