Disabilities
Perspectives on Parenting©
by Nancy Lambert Davenport
Nancy Davenport's Column:
For Richardson News 04-16-00
Copyright Nancy Lambert Davenport 2000
"Dystonia victims learn how to cope -- and smile"
"It's all in your head" is such an irritating statement. Yet that is what many people who have dystonia have heard for years. Because I was not familiar with the disability I went to an organizational meeting of a few people wanting to start a support group. There was a broad spectrum of ages represented just as there is a variety of symptoms to the syndrome.
Dystonia is a movement disorder affecting about 300,000 people in this country and can be hereditary. It is not fatal and never causes brain damage. Dystonia is difficult to diagnose because of the variety of symptoms. One set of symptoms often found in children start in one part of the body, usually in an arm or a leg and may spread to the rest of the body, causing it to twist into unnatural positions.
Other symptoms more common in adults are similar to those of cerebral palsy or parkinsonism so are often misdiagnosed. Still others concentrate on lack of control of specific muscles in one part of the body such as those which control the eyelids. When this occurs the lids close involuntarily rendering a person blind without notice in spite of normal vision.
One man in the group went to a doctor's office because he could not get his body to stand up straight. He told the doctor that day after day and week after week his body was becoming more and more bent over to one side. He got to the point that he literally walked completely bent at the waist to his right side. It was as if his brain was giving wrong information to his body. Then he discovered that if he took his finger and touched it to the right side of his head and pushed, as if lifting his bent body with the strength of that finger, he could right himself to a standing position. Take away the finger and he was back in a bent position. He has since worked out some socially appropriate ways of walking with his finger to his head that does not attract attention.
People in the room had various stories of their own compensation for their disability. Some people periodically took an expensive injection in the area affected. Others offered that they discovered that stress and poor attitude exacerbated the symptoms so worked at eliminating those from their lives. One dentist who has dystonia said he changed professions because the natural stress of dentistry combined with dystonia made him unable to control the small muscles necessary for his work. He is now a very happy writer. One woman in an interview advised those with dystonia to "put that smile on whether you feel like it or not. Have patience with those clerks who are impatient with your problems. Forgive! Forgive! Forgive! Continue to search for something that will improve your quality of life, but don't do that to the exclusion of enjoying what you already have. Look up!"
That not only sounds like good advice for coping with dystonia, but those are good words for anyone to live by. Since "good attitude" is so important , in a way, dystonia is "all in your head" after all.
If you are interested in learning more about Dystonia or joining a support group here in Dallas call the national headquarters at1-888-346-3673 for information. If you would like to chat with someone who has dystonia call Don LeBlanc at 504-279-4279.
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Nancy Lambert Davenport
EMAIL: ndavenport@ticnet.com
URL: http://www.nancyldavenport.com