David Novotny is a guest blogger from Los Angeles who was diagnosed with dystonia, the third most common movement disorder, in his mid-20s.
When I was first diagnosed with dystonia (a movement disorder characterized by prolonged, painful muscle contractions) my head was locked in place nearly 90 degrees to the left. A therapy of neurotoxin injections somewhat helped alleviate the pain and severity of my twisting. But the benefits were not lasting and my dystonic posture would always come back.
September is Dystonia Awareness Month, a chance to educate others about this lesser-known movement disorder that can also be a symptom of Parkinson's disease. This month also marks my two-year anniversary of undergoing deep brain stimulation (DBS) -- a surgical procedure that uses electrical stimulation to attempt to reroute abnormal brain activity.
Today, I am very thankful to say that DBS has been a success, as I am no longer functionally impaired by dystonia. I fully admit, I was at first afraid of the idea of brain surgery. But now that I have undergone the procedure my only regret is that I did not have it done sooner. Therefore it has become my goal to educate both my fellow patients and the public at large about dystonia and this procedure as one treatment option.
Popularly referred to as a "brain pacemaker," DBS is generally a two-part procedure in which electrodes are implanted with millimeter precision inside one's brain and are then connected via a wire running up and down one's neck to neurostimulator implanted in their chest. DBS was approved by the U.S. Food and Drug Administration (FDA) in 1997 to treat tremor but was not approved for dystonia until 2003. (DBS is also an option for some people living with Parkinson's.)
However it is important to note that while the procedure itself is relatively the same for treating movement disorders, it works differently on each. Furthermore, it is essential for me to state that DBS is not suitable for everyone, it is not a cure and success will vary from patient to patient.
My journey with DBS also opened my eyes to opportunities to "pay if forward" by contributing my experience and time to research. Before undergoing my procedure, I agreed to take part in research gathering by my surgeon. After the surgery, I wore a "Hollywood" motion-capture glove and made various movements with my hand for 15 minutes, allowing my doctor to capture information on how the brain commands movements.
I sincerely hope that by providing as much information as possible from my patient perspective, I can help others living with movement disorders at least consider DBS as an option and think about volunteering to help clinicians and researchers gather invaluable data to inform development of future therapies.
Learn more about DBS in Parkinson's 360, our online toolkit for patients and families.