WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Still Smiling After Dystonia
There are many others who are experiencing the same thing that you are, so you're not alone. Finding a qualified physician can be challenging but they are out there, and so are effective treatments to help your symptoms. Become an advocate for yourself and involved in your care.
– Martha Murphy
My journey with dystonia began in 1975 when I awoke on Halloween morning with a very stiff neck. I was 23 years old, had just gotten married that year, I had a job I loved as a secretary/receptionist at a local university and life was good. I thought that I had just slept wrong. As the days and weeks passed and the left side of my neck remained stiff, I sought medical help, but none of the physicians and chiropractors who I visited had any real idea of what was wrong with me. I heard the usual opinions such as, "You are probably under a lot of stress," and "This is just a temporary thing," and "Take this pill." Nothing helped and I had no diagnosis. Over the next 12 years, I sought out a variety of specialists including neurologists, rheumatologists, homeopathic doctors, exercise physiologists, physical therapists, primary care physicians, physical medicine doctors and hypnotherapists. Meanwhile, my symptoms were worsening and I was now unable to turn my head to the right or look down. I had headaches every day and I experienced significant neck pain. At my worst, my neck would jerk violently and uncontrollably back and forth. I had grown weary of telling new doctors my story, only to come away with no clear diagnosis or adequate treatment. But then, things changed the day I walked into another neurologist's office in 1987 and he said, "I know what you have...you have Spasmodic Torticollis." I had never heard those words before but at least I had a name for my symptoms, and I was thrilled to have a confirmation that this was an actual physical problem that I had been living with. I thought that I would be as good as new in no time! I underwent a CT scan and a brain MRI, which both came back normal. I started on a regimen of medications and my first round of Botox proved to be a miserable failure, as it was not administered by an MD with appropriate training. I was now in worse shape. I swore off of Botox for the next 7 years. I had to take early retirement from my job, and I had no idea where my life was headed. I was married with 3 children and I was a mess in every way. That is when a short bout with depression came my way, along with denial, feeling sorry for myself, asking God why this had happened to me, and just feeling sad. I quickly realized that moping around only made me feel worse and, fortunately, I was able to snap out of it and move forward with my life. My next step...find others who had dystonia and meet them in person. I had never seen or met anyone before who looked like me, and I felt so alone and different. I contacted a national dystonia organization and they helped to connect me with 3 others living in San Diego who had dystonia, and that was the creation of our support group which continues 20 years later. I love being a support group leader and bringing people together to learn from one another and hear the latest information from our guest speakers. I have met some amazing people in the dystonia community and I feel blessed and honored to know them. None of this would have happened if I didn't have dystonia. Today, I am doing pretty well...I get Myobloc injections every 4 months and they help to manage my symptoms. I'm still leading our support group and I'm also a regional coordinator for DMRF as well as part-time staff as their Brain Bank Liaison. I also have volunteered at the Info. Desk at a local hospital for the past 12 years. I have a lot to be thankful for. On the good days, and the less-than-good days, if I put a smile on my face, everything is better; my outlook improves, and so do my symptoms! I am grateful for everything that I have overcome and accomplished. Dystonia has given me a real appreciation for life and changed my perspective on everything. I would be a different person without it. It has led me down a completely different path, but I wouldn't change a thing. Thirty-two years after dystonia entered my life, I'm still smiling!
