by Denise Gibson
In my journey with cervical dystonia, the Internet has been an invaluable resource. When I was first diagnosed with this rare movement disorder, I used the Internet to find out about it. When I wanted to learn from other patients about how to cope, the Internet gave me access to patient forums. Web seminars brought information to me in the comfort of my own home.
But the great information superhighway could not offer another kind of connection, equally important in my life—personal contact with others. The embarrassment of living with a movement disorder—because of my head tremors and my inability to speak clearly, as well as the resulting low self-esteem—had left me isolated. Communicating with the patient forum via the web made me long to physically meet others with dystonia, people who would understand and accept my limitations. But I was living in Spokane where there was no support group and few others with dystonia.
During an appointment with my neurologist, Dr. Anthony Santiago, I overheard someone ask about starting a Parkinson’s support group. A thunderbolt struck, and I asked if it would be possible to start a dystonia support group. Little did I know that would mean I would be the one to start it.
I was given the name of another person who had voiced a similar request. When Mary Jane Kellog and I first met and discussed forming a support group, her goal was to help others with blepharospasm, a dystonia affecting the eyes. I had been thinking of a support group addressing cervical dystonia, but within 30 minutes we knew that we wanted a support group to help people with any form of dystonia. It was obvious to us that although the affected muscle groups were different, we all faced the same problems, had the same concerns, were dealing with brains that seemed wired in the same way, and could benefit from connecting with each other.
We had no idea how many people with dystonia might be out there, and whether anyone would want to join us. But we were wise enough to invite Dr. Anthony Santiago, a neurologist specializing in movement disorders, to speak at our first meeting. The room was packed. More than 50 people showed up—patients, caregivers, and medical personnel—and from that one meeting, our little support group of two grew to over 20.
As our numbers grew, so did our enthusiasm and the connections we forged. For our educational meetings, we invited a wide variety of medical professionals to speak. Anything that helped us cope became a good source of discussion. Any treatment that was effective became a topic worthy of being presented. And the perfect professional for presenting the information always seemed to cross our paths at the right moment in time.
The members of our group participated with suggestions and contacts. Often those with the most severe problems were the ones offering the best ideas, for they were the most experienced at coping with dystonia. Mary Jane worked tirelessly behind the scenes, contacting people with blepharospasm to give them information and let them know that they were not alone.
While education was important, we found that sitting and listening was not the key—the key was participation. So we started a conversation group to address individual needs and explore thoughts and concerns. We also encouraged members to participate in an ongoing meditation group. Meditation seemed to help immensely in learning to focus our minds, something that is difficult with movement disorders. A Dance for Parkinson’s group—based on the widely acclaimed method developed by the Mark Morris Dance Group—has formed, and since we helped in planning the local program, we think of ourselves as partners in the dance of reaching out to others who are creatively dealing with their physical challenges.
Future plans call for a voice/signing group, similar to the popular Tremble Clefs singing program for Parkinson’s Patients. Members of our group also want to form a speakers panel to visit clinicians throughout the city and educate them about the various forms of dystonia. Another goal is to develop our website so that it can become an educational resource.
Being diagnosed with a movement disorder is like having the rug pulled out from under you. On one hand, it is a relief to find out what causes the pain, tremors, and twisting and it is a blessing to find medical help to treat it. On the other hand, the diagnosis feels like a heavy burden, because there is no going back to our existence before dystonia.
Connecting with others who experience the same problems is like having a weight lifted from our shoulders. Those connections enable us to share in our successes and support each other in our defeats, as reflected in these quotes from members:
“I have learned many ways in which to deal with the varying manifestations of the illness and its pain.”
“I am able to help others with similar conditions.”
“I am not the only one dealing with dystonia, and there are people I can go to if my condition worsens.”
“[This group] has helped me understand what is going on in my body and is the main reason I am doing as well as I am today.”
“This support group has led me to doctors and therapies that have benefited me.”
“…a sharing of resources and individual/personal struggles.”
“…a place you can go and know people are not staring at you because you have a disability.”
“…helps you understand and deal with the effects of dystonia, no matter which kind you have.”
“…has provided me with suggestions that I use to decrease my symptoms when they start acting up.”
“I have gained warmth and support from wonderful people.”
Our “little” group has now grown to over 100 people with dystonia of all forms. Many members are not active participants, but they regularly mention how much they appreciate receiving the information that is sent out. For others just being connected and knowing the group exists is enough. Upon occasion I run into people who have not been active for a while, and I am delighted if I discover it is because they are doing so well. Much of that success is due to great medical care by movement disorder specialists, exceptional therapists, and experienced physicians. Equally important is the human spirit, with its determination to live life to its fullest.
As a support group leader, I can tell you that my participation in the group has helped me immensely in coping with dystonia. I was deeply saddened to lose my co-leader Mary Jane to a stroke. But it only inspired me to work harder in an ongoing effort to help educate others about this disorder. In spite of the personal limitations of dystonia, I am always seeking ways to overcome them because—well, I prefer to explore beyond limitations. The medical and therapeutic communities have been fabulous in sharing their time, knowledge, and facilities. And our dystonia support group has been incredible in helping each other, while giving all of us a glimpse into a different form of healing — one of the heart — in the midst of a movement disorder.
* Dystonia is a neurological movement disorder characterized by involuntary, sustained muscle contractions resulting in twisting, abnormal postures and/or arhythmic tremors. It can affect one or more parts of the body, and similar to Parkinson’s, the same part of the brain—the basal ganglia— is affected.
Denise Gibson pauses on a hike with her dogs Aengus and Ffinian, on the Icicle River Trail near Leavenworth, WA. Photo by William Gibson
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