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May 13, 2005
Movement disorder makes living difficult for those who are afflicted
By BREANNE HUBBARD
Pahrump Valley residents Sharon Davis and Craig Connors have a secret. As they try to come out in the open, Davis tugs at her arm, while Connors fiddles with his hands. Both can't keep still, for fear the secret will expose them before they have a chance to explain. Both Davis and Connors have dystonia. If the disease doesn't ring a bell, don't worry. "Most people haven't (heard of the disease)," Davis said. "Most doctors haven't." Although the term is uncommon, the disease is the third most frequent movement disorder after Parkinson's disease and Tremor, according to the Dystonia Medical Research Foundation. To best describe it, dystonia is similar to Parkinson's; the symptoms run the gamut, but most common among those who suffer from the disease, their limbs twitch - sometimes softly, sometimes more violently. The medical definition of dystonia, found in the U.S. Department of Health and Human Services brochure, is "a movement disorder in which sustained muscle contractions cause twisting and repetitive movement or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Those with dystonia usually have normal intelligence and no associated psychiatric disorders." Davis, 63, was diagnosed with dystonia in 1997, while Connors was diagnosed the year before. The road to diagnosis was anything but easy. "I've had it since I was a kid," Connors, 51, said. Although he knew something was wrong at a young age, most people thought he was twitching on purpose. He grew up believing that - and felt alone in the world. Because of the misinformation in the beginning, Connors received electric shock therapy because he thought it would make him forget whatever he had. "It's embarrassing," he said. "Before I knew what I had, I thought I was doing it to myself." After some research later in life, Connors found dystonia on the Internet. He knew right then he had it. "I didn't say nothing until I knew what I had," he said. After more research, Connors found out the disease is genetic and several members of his family had the disease. "A lot of this stuff you have to look up yourself," he said. Connors is afraid that in the modern age of medicine, children will be misdiagnosed with Attention Deficit Disorder instead of dystonia. He thinks awareness needs to spread. "My biggest thing is to get the awareness out to the kids," he said. Davis went through 10 neurologists before she even heard of dystonia. "I had one doctor who just about killed me," Davis said. Movement disorders affect more than 40 million Americans, according to Life In Motion, an organization dedicated to finding a cure for movement disorders. An estimated 300,000 are affected with dystonia. Both Davis and Connors think there are probably more people out there with dystonia, who either don't know it, or have been misdiagnosed. There are different classifications of dystonia: generalized, focal, multi-focal, segmental and hemidystonia. Under the classes are different types of dystonia: cervical, also known as spasmodic torticollis, affects the muscles in the neck that control the position of the head; blepharospasm is the second most common focal dystonia, causing rapid blinking and closure of the eyelids; cranial dystonia affects the muscles of the head, face and neck; oromandibular affects the muscles of the jaw, lips and tongue; spasmodic affect the throat muscles; writer's cramp affects the hand muscles and sometimes the forearm; and dopa-responsive begins in childhood or adolescence with difficulty in walking or mobility. Davis suffers from dystonia in her jaw, neck and the entire right side of her body. She also has peroximal dystonia. "That comes and goes," she said. Davis goes into seizures, but never loses consciousness. "The lock and shake is what I like to call it." Anything could trigger Davis' tremors. "The wind will start it up. You just don't know what will trigger it," she said. The seizures are painful - "extremely, because you twist." On the day of the interview, Davis said she was having a good day. Davis has a service dog, Angel Bear, to help with the seizures. "She knows when they're coming and she can stop them," she said. When Davis goes into a full-blown seizure, Angel will tap her paw against Davis' arm to break the cycle. "It's enough to break the circuitry," Davis said. Davis grew up in Wisconsin and found through research cervical dystonia is most common in the state. She assumes the cold weather has a lot to do with the impact. Both Davis and Connors get tremors all of the time and during the interview, it comes and goes. Davis and Connors find fidgeting helps keep the twitches to a minimum. Connors said that in earlier years he was "spending a lot of time figuring out a way to hide from stuff." Connors' dystonia is slightly different from Davis'. He has cervical and peroximal dystonia, as well as one that causes him to shake all of the time, similar to that of a Parkinson's disease patient. His symptoms caused him to stop being a truck driver. Connors often gets writer's cramp. "I used to press real hard on pens to keep it steady," he said. Now, Connors just calls anyone he wants to stay in contact with. An e-mail, he said, could take an hour per sentence. In Pahrump, Davis and Connors are alone in their suffering to the best of their knowledge. "There was another woman. But she moved," Davis said. The two met in Las Vegas roughly a year ago while attending a dystonia support group. That group has now disbanded, but Davis and Connors have remained in contact and have developed a friendship. They currently attend the Movers and Shakers support group in the valley. Without Davis, Connors would still feel alone. "There's nowhere to turn," he said. Davis agreed that knowing other people have the disease makes it easer to get through the day. Davis has a husband she's been married to for 42 years and a service dog to help her through the rough times. Connors was once married, making it to 17 years before the bottom fell out. "Mrs. Wonderful couldn't deal with it," he said. There isn't a cure for dystonia at the moment. But, there are several treatments to lessen the pain. Some are more severe than others, such as Connors' recent deep brain stimulation surgery 10 months ago. "It's made a big difference," Davis said. She remembers when Connors used to twitch more rapidly than in the recent months. Connors, not an alcoholic by any means, has found that a couple of drinks ease the tremors at times. Stimulants and caffeine are triggers, so both stay away from those. Davis does several things, including pills and Botox. The injections commonly used for cosmetic surgery help control the tremors in her neck. "These people who get the Botox for cosmetics are nuts because that stuff hurts," she said. Connors tried Botox, but it didn't help his ailments. One thing Davis and Connors both use as treatment is humor. "There are people a lot worse than we are," she said. Both agree if they didn't have their senses of humor, they might not make it through the day. "If you take yourself too seriously, you'll drive yourself crazy," Davis said. "Some days I can't even stand me." "They say the illness won't kill you," Connors said, "but sometimes these symptoms are so bad, it'll kill you, anyway." For more information, or to help, call Life In Motion at 1-866-LIM-3136, or www.life-in-motion.org. |
