Christine – Buffalo, NY
Dystonia comes in many forms and affects people in drastically different ways.
In October 2006, I began displaying facial tremors and uncontrollable upper body muscle movement. By December my symptoms had maximized and remained continuous. After many doctor visits and no answers… one physician aptly explained that my movements were causing my body to feel as if I had been running a marathon without ever leaving my chair. I was in constant pain, rarely slept for longer than and hour or two, and developed coping strategies to try to mask my movements. I had lost my confidence and found it difficult to maintain friendships because I became a social embarrassment. Eventually I was forced to leave my job by my team of neurologists, which led to the loss of my business and professional confidence.
My parents and I began searching for a diagnosis and possible cause for these involuntary movements. Over the course of the next two years we met with and consulted with several doctors throughout New York. Initially I was told I had Parkinsonism a mirror of Parkinson Disorder. Several other disorders including Lupus, Huntington’s chorea, and MS were investigated and eventually ruled out. I kept questioning and eventually we were led to a Neurologist in Philadelphia who established a diagnosis of Tardive Dystonia. A leading neurologist and movement specialist at the Mayo Clinic in Rochester, Minnesota, confirmed the diagnosis. “Tardive dystonia is a form of tardive dyskinesia, which includes involuntary movement that resemble multiple movement disorders.” Two years after the onset of my symptoms I finally had a diagnosis that seemed more like a life sentence.
Here is where my story differs from those who developed Dystonia because of genetic factors. My Tardive Dystonia is a pharmaceutically induced form of dystonia for which there has been no known cure. Often dystonic symptoms will occur as a side effect of a medication and usually they are transient and will disappear once a patient discontinues using that particular medicine. In my case, the damage had become permanent before the connection was made between the medication and the symptoms. My doctors investigated and tried every drug regime available, traditional, experimental, and holistic to no avail.
Years ago, as a synchronized swimmer, my coach would often times cite my persistence, my perseverance, and my “never give-up” attitude. In keeping with that stubborn Irish persistence, I dug deep and decided that I would not let this disorder continue to define me or hold me prisoner. With the guidance of my lead neurologist I enrolled in Canisius College’s Masters program in Mental Health Counseling. I graduated and enthusiastically began my new career job search while pursuing a postmasters program. Once again, roadblocks complicated my quest.
I have learned that when one door closes another has opened nearby. On the other side of that door was a young man who was able to look past my disfiguring facial grimaces, less than gracious arm and torso movements, and endless days of fatigue. He became that “knight in shining armor” who gave me a reason to believe in love and in life. Now I had a partner to fight this disorder. We have since married and opened a restaurant /bar together.
In January of 2015, I met with Dr. Ronny Alterman renowned Neurosurgeon in Boston, MA, who believed Deep Brain Stimulation, a surgery designed first for Parkinson patients, and then for dystonia patients, might provide me with some movement relief. In October 2015, I underwent two surgeries in one day. The wires were implanted in my brain and, my new best friend, my Neurotransmitter was embedded in my chest. As my programing has progressed my symptoms have begun to subside, I have been weaned from many medications, and my greatest joy is actually sleeping through the night.
My journey has just begun, and I know there are still many chapters to be written. Yes, I still have pain, and bad days, and despair of ever being normal again but I now have a new lease on life!
And that marathon I was running without ever leaving home = well, my new goal is to actually run a marathon. I have already successfully completed three 5K races. I’m on my way!
With continued research and success stories of patients in Western New York, there is hope that Dystonia awareness will grow. The data regarding my disorder and my surgery adds a new dimension to the research and may provide hope and reassurance to other dystonic patients searching for a cure.