Losing Control: My Brain-Body Battle

For nearly a year I’ve been struggling with a peculiar problem. One I’ve been too embarrassed to disclose to most people. But I think it’s about time I write about it - to better understand the situation, to sift through my thoughts and theories, and maybe to reach some valuable insight. So here it goes…

What truly ended my 10-plus-year relationship with running wasn’t an injury per se or lack of willpower and motivation. I gave up running when my legs literally gave up on me. As I’ve recently become aware of the rare phenomenon of “runner’s dystonia” (or “repetitive exercise dystonia”), I believe I’ve finally found a name for my strange experience - and with it, validation that my condition isn’t merely “in my head.” It began as a strange scuffing of my left foot on occasions during runs, which snowballed into a complete deterioration of my running form. It was as if I’d lost control of my own leg…As I watched a video of myself running on a treadmill during one of my physical therapy appointments, I cringed: I looked like a toddler. My legs flared outward, moving in a most unnatural and clumsy way. I was appalled but couldn’t make sense of it, and neither could my physical therapist. So I decided to stop running. And I wish that had been it.

Unfortunately, this gait issue then extended from running to walking - which has been my deepest frustration for the past year. My left foot hits the ground awkwardly, my left knee locks up, and tripping seems imminent. I’ve tried listening to rhythmic music while walking, trodding on uneven or softer surfaces, even walking backward. Sometimes these techniques appear to provide relief, but often they don’t. And some days walks feel better than others; but there are only incredibly rare instances when a walk feels normal. Most times I must consciously focus on my gait - “shorter strides, stabilize the core, extend the hip…” Otherwise I fear my scuffing will degenerate into a totally obvious trip. It’s been exhausting and disheartening. I’ve developed various hypotheses from month to month. With each idea, I was convinced I could fix my clumsiness; and with each idea, my gait might temporarily have improved slightly (placebo?) but eventually regressed to the same awkward pattern.

The entire situation lends itself to comedy. Most people comment on my fit physique and strength, both inside and outside the gym. I can heft heavy weight, do more pull-ups than most guys, and have an intense passion for fitness. And yet I can’t even walk, one of the most fundamental human patterns that comes naturally to even a 2-year-old. Ridiculous. Though perhaps the greater irony lies in the fact that a neuroscientist and fitness fanatic finds herself struggling with a movement disorder, a miscommunication between the brain and body. However, this ironic circumstance may, in some respects, be fortuitous: my education and knowledge can enable me to understand this disorder better than the typical patient, maybe even reach a solution of sorts.

So where does this lead me? As I’ve begun to delve into the sparse literature on runner’s dystonia, I’ve learned that this disorder currently has no cure. There’s botox injection, carbidopa, benzodiazepine, physical therapy, mental imagery…A given treatment may provide relief to one person but not another - and some people fail to respond to much of anything. While this reality may seem dismal, I’m choosing to adopt a more productive mindset. Giving up isn’t an option; I value movement far too much to simply confine myself without a fight. I’ve been trying physical therapy again, with a different practitioner who’s attempting to address my coordination problem. Of course, improvements will require immense diligence and patience - if they are to occur at all. So I’ll try, wait, and see. I’ll continue to research this disorder, hopefully finding a way to incorporate it into my own neuroscience investigations. Because where there is lack of knowledge lies an opportunity; and where there is a problem lies a solution, however obscure or complicated it may be. My struggle has been prolonged and unyielding. Nonetheless, armored with these realizations, I am prepared to get moving. Even if I stumble a bit along the way.