The CNI Movement Disorders Center
My name is Bill and my experience with dystonia began 20 years ago when, at the age of 17, my voice began "locking up" on me while speaking. For about a weeklong period, I had no voice at all, then the symptoms faded away only to reemerge once again when I began college. The symptoms, which became nearly constant, were at their worst when I needed my voice the most, such as when speaking in front of groups of people. The doctors at the university I attended attributed this to "nerves" and I continued to struggle with speaking. Then, 10 years ago, after being referred from one specialist to the next, I was eventually diagnosed with spasmodic dysphonia. While it was a relief to finally know what the problem was and that there were treatment options available, such as Botox® injections, the results from the injections were disappointing and varied - very little effect which wore off quickly, no effect at all, or I lost my voice altogether. I became resigned to the fact that this was "just my voice" and that I would need to accept that.
Eight more years went by and then my head began pulling to the left. I first went to my family practice doctor who prescribed muscle relaxants and thought that the condition would resolve by itself. Barely noticeable at first, the pulling kept increasing until, after about five months, my head became locked over my left shoulder. When it became clear that my condition was not improving, but steadily getting worse, my doctor ordered x-rays and MRI. When the results from these two tests didn't show any physical evidence of the problem, my doctor referred me to a neck and spine specialist. The specialist evaluated me and referred me to a doctor who performed a facet injection between the vertebra in an effort to freeze the nerves associated with chiropractic treatments and acupuncture. While these treatments provided some temporary help, the effects were fleeting. At this point, the pain had become intense and the simple activities of life became extremely difficult. Reading was nearly impossible, writing was slow and labored, and even walking was a real effort since I was now not able to see in front of me, but only to my left. I would constantly have to stop, rest, and get my bearings. My one saving grace was that leaning the back of my head against a headrest would cause the muscles to relax, allowing me to drive, sit in a chair at work with the aid of a headrest, and sleep at night.
Finally, I was referred to Dr. Lauren Seeberger at the CNI Movement Disorders Center, who recognized the problem as cervical dystonia. After discussing different treatment options with Dr. Seeberger, we began Botox® injections. Since the first few series of injections produced minimal effect, I continued to pursue other courses of treatment, such as stretching, exercise, a nutrition program, and hot and cold stone massage. With Dr. Seeberger's encouragement, I continued to receive Botox® injections and about six weeks after the fifth series of injections, my neck muscles slowly began to release and I was able to hold my head up straight for the first time in nearly 18 months. It has been such a relief to be free from pain and to regain some control over which direction my head is turned. I continue to receive Botox® injections on a regular basis and stretch and exercise. I've even resumed some of my previous activities, such as hiking and tennis. Dr. Seeberger's compassionate care has been a blessing, and has allowed me to look forward to meet the challenges of life.
This story is reprinted from the CNI "In Touch" newsletter, Fall 2003.
Sondra Cook, Leader of the Denver Area Dystonia Support Group, was awarded a 2001 recipient of the Cindy Acree Hope Award from CNI. The following article from the Dystonia Dialogue newsletter was adapted from a letter Sondra sent to friends within the dystonia community upon receiving the award.
I want to share with you what an evening April 30, 2002, was for me. It was a night I will always remember from its beginning to its end.
I arrived at Cherry Hills Country Club with my family for what will always be a night to remember. I was to be given the Cindy Acree Hope Award from the Colorado Neurological Institute. What an honor, and what a welcome they gave me. But before I continue, I want to thank my dystonia "family" - while you were not there to share this with me, you were all there in my heart for you are a sincere part of my life and thus made it possible for me to receive this award.
As I looked out at all the people and told them about dystonia, it was as if you were looking back at me and giving me the courage to explain what life with dystonia is on a daily basis. How we manage, what it takes, about our pain, and how others who are unfamiliar with dystonia view us. It was an opportunity to give them a little insight.
There were doctors in attendance as well as lay people who had no knowledge of dystonia, and it was important for me to try to educate them and have them see someone who lives with this condition all the time. I had prayed that I not give them a "demonstration" of what my dystonia looks like, and my prayers were answered.
I let them know that receiving this honor was a thrill, one that I will always remember, but also an inspiration to be there with others who had overcome so much. I have a full heart for all the wonderful, kind, and dear people that make up the Colorado Neurological Institute. I appreciate each of them for making me feel so special.
The award I received is named for a young woman named Cindy Acree who had a stroke while very young. She fought her way back and competed in a bike ride called "Ride the Rockies", which is a challenge for any person who is perfectly healthy. She was determined, and she accomplished what she set out to do. How amazing she is, how warm and loving. She has just retired from the board to go on to other challenges, at which I am sure she will succeed. Cindy is one example of the kind of people that I had the good fortune to be with on this April 30th.
In closing, I want to say that the evening was a demonstration of the profound strength that people are capable of in the most difficult of times in their lives. It was also an evening that show4ed how the role of the family and those around us can mean so much. The evening reminded and inspired me that we are not in this alone!