David Novotny is a guest blogger from Los Angeles who has lived with dystonia for five years after being diagnosed in his mid-20s. His YouTube channel shares his personal story and experience with dystonia.
There was a time when I had to live life with my head locked in place 90 degrees to the left and tilted 45 degrees to the right. My parents held my head in place, maneuvering my jaw like a nutcracker so that I could chew food. I worked full-time while literally holding my head in place, thus rendering the use of only one hand. Unfortunately, these are ordinary daily occurrences for the estimated 500,000 people living in the United States with the neurological disorder of dystonia.
September is Dystonia Awareness Month and "dystonics" are doing everything they can to make sure the public knows that dystonia is NOT a country. Rather, it's the third most common movement disorder, causing uncontrollable muscle spasms and/or sustained abnormal twisting postures. It can affect one's entire body or be limited to a specific region. Many people with Parkinson's also may experience dystonia as a symptom, but without ever hearing the word beforehand.
This particular September also is of incredible significance to me as my one-year anniversary of undergoing deep brain stimulation (DBS). Twelve months ago I was wheeled into an operating room for this two-part surgery (which can also treat PD motor symptoms in some patients) in which electrodes were implanted inside my brain and connected to a battery pack in my chest via a wire, in order to help me regain control over my motor function.
Today, I am very thankful to say that I no longer experience many of the effects of my dystonia. That being said, I want to make it perfectly clear that DBS is not a cure and success varies from patient to patient. Furthermore, it can take several months after surgery before results occur. I, for example, continue to receive neurotoxin injections as complementary therapy to help lessen dystonic postures and spasms.
There are many areas of research, treatment and experience which overlap between the "big three" movement disorders of Parkinson's, dystonia and essential tremor. I realized that my treatment, for example, is the sum total of decades of debates, lectures, symposiums, trials, experiments, or simply put the advocacy of the many bold and brave doctors and patients alike who had come before me.
And it is this notion of "pay it forward" that is so essential. I now advocate today for a better tomorrow by helping the dystonia community learn about treatment options and the need for more research. My hope is that one day my DBS hardware will be but an ancient artifact, and that dystonia itself is a thing of the past.