Author Bio: Allison London is living with dystonia in her trunk, neck and hands, and is the proud captain of Team Defeat Dystonia, a Team Fox team participating in a September triathlon.
A retired attorney, she is the youngest-ever board member of The Bachmann-Strauss Dystonia & Parkinson Foundation as well as a New York Times-published Op-Ed contributor. Ali and her husband, Dan, call New York City home, and are thrilled to be expecting their first child via gestational carrier.
Counseling a 20-something Californian with dystonia ahead of his Deep Brain Stimulation (DBS) surgery. Assisting a father with finding a pediatric movement disorder specialist for his eight-year-old daughter. Registering participants for Team Defeat Dystonia’s first-ever Team Fox event. That was my post-physical therapy session Monday.
These aren't the burdens of having dystonia, which I was diagnosed with nearly six years ago at the ripe old age of 30, after living with it for at least four years. These are the rare gifts. The opportunities to help others navigate the same choppy, scary waters that I and many living with dystonia, Parkinson’s and other brain disorders have.
Another gift has been writing this guest blog post as the first guest blogger on this site with primary dystonia. That is, involuntary spasms and contractions and the awkward, painful postures they cause are the only clinical features of my condition. Dystonia is the third most common neurological movement disorder, but is not well-known. I’d never heard of it before my diagnosis, and most people haven’t either. Like PD, there is no cure, and an estimated 40 percent of people with PD have dystonia, too.
So, having the chance to shine a spotlight on it on this platform? It’s a big deal.
Those of us in the dystonia and PD communities are cousins sharing much of the same forms of treatment, and a lot of us are more like brothers and sisters. This is why it makes sense for us to share a home at MJFF, something we’ve been doing since January, when many in the dystonia community arrived here after MJFF formed a collaborative research alliance with The Bachmann-Strauss Dystonia & Parkinson Foundation.
So after years of organizing Bachmann-Strauss events, I was excited to get involved with Team Fox, and that’s how Team Defeat Dystonia came to be. On September 26, 100 awesome members of this team will be taking on the Westchester Super Sprint Triathlon — most in relays of two to three people — to raise critical research money for and awareness of dystonia and PD.
My involvement with MJFF has heightened my understanding too. I’ve learned that some in the PD community didn’t know that dystonia can be a condition on its own, rather than just a symptom. And, as I talk with more people living with both diseases, I’ve been surprised at how many find their dystonia to be more debilitating as the disease progresses and seek out DBS because of it. DBS’s benefits for dystonia can be slower to experience than with PD — usually three to six months before any improvement, with on average, a two-year-window to continue seeing gains. For me, it took longer, but at almost three years post-DBS, I’m happily still seeing them.
Dystonia has sent my life on a very different course than I could’ve imagined. I’d give it back in a heartbeat, but I can’t. So, come that September morning, I’ll be waiting for my incredible husband to complete most of the triathlon before we walk across that finish line together. Our relay team name: SuperDan and the Bionic Woman. Oh, and how Team Defeat Dystonia will celebrate afterwards — a celebration which will only pale in comparison to the bash we throw when cures for dystonia and PD are found.
I hope you’ll join us, be it at the Super Sprint or another event! And I hope you’ll continue to learn more about dystonia, how it relates to PD and the road ahead.
Sign the petition to make September the official Dystonia Awareness Month.