Neurological disorder can take control over victims

By Peggy Ussery
Published: June 3, 2009
It started with stiffness in her neck. Over time, Jane Murphy noticed her chin was hanging low to her chest.
Doctors put her on arthritis medicines and recommended heat treatment. The pain spread and she began using her hand to keep her head up straight. The symptoms spread from her neck to her eyelids and then to her face.
“I was on so much medicine, I wanted to sleep all the time,” Murphy said.
The ball of Tim Hornsby’s foot began to swell. He noticed his toe was falling asleep regularly. He began dragging his foot. Hornsby thought it might be related to an old back injury. Doctors ruled out stroke and Parkinson’s disease.
Today, the once active engineer uses a walker for support. His toes curl up under the constant muscle contraction. His legs lock up without warning, causing Hornsby to fall on more than one occasion — he even broke his nose once on a night stand.
“You lose a lot of dignity,” Hornsby said. “I’ve always been one that’s done anything, and to have to ask people to do things for you ...”
The pain near the front of Chrissi Brannon’s ears spread to her teeth. For five years she saw dentists, oral surgeons, neurologists and ear, nose and throat specialists. She had root canals on all her back teeth. There were doctors and others who thought the 31-year-old was drug-seeking. Her chin started to pucker out uncontrollably.
Brannon’s left shoulder began to hurt; then, her right shoulder. The pain, fatigue and depression consumed her. Last year, the wife and mother of two gave up a career she loved as a pharmaceutical representative.
“I was a go-getter,” Brannon said. “I worked all the time.”
Murphy, Hornsby and Brannon each have a neurological movement disorder called dystonia. It’s the third most common neurological disorder in the U.S., but most people have never heard of it.
Dystonia is in the same family of neurological disorders as Parkinson’s disease. While Parkinson’s eventually destroys its victim’s brain, dystonia takes the body. It’s a debilitating condition that, while not fatal, forces muscles into a constant and painful contraction, sometimes disabling patients. The muscle contraction is so intense it’s compared to 18 hours of working out. It may hit one area of the body — legs, arms, neck, face, eyes — or attack the entire body, known as generalized dystonia. It can even effect hearing and speech, and severe cases of dystonia in the neck or vocal cords can actually impair breathing.
Hornsby, who lives in Headland, attends support group meetings in Birmingham. But he, Murphy and Brannon — who both live in Newville — hope to get enough interest to establish a Wiregrass support group. They figure there are others locally also dealing with the condition.
“I just know there are so many people out there with pain,” Brannon said.
Why and how dystonia happens is unknown. There are theories. It could be genetic. It may come on after a trauma, especially a physical trauma. Some people may be predisposed to it. Stress can aggravate symptoms.
Some people have only mild symptoms, while others live in agony. There is no cure.
A common treatment for dystonia is botox injections given every few months to paralyze the muscles and stop the involuntary movements. Medications can help, and in severe cases deep brain stimulation surgery can relieve symptoms.
“I had problems and didn’t know what the problems were,” Hornsby said. “They weren’t consistent.”
Unlike many people who spend years trying to get a diagnosis, Hornsby received a diagnosis within only a few months of seeking help in 2006. However, he saw eight doctors first. Within a year of his diagnosis, his symptoms had spread from one foot to the other.
When he and his wife, Virginia, received the news, they turned to the Internet for information. What they read was disheartening.
“Emotions for me and Virginia went from rock bottom to everywhere,” Hornsby said.
He was able to walk his daughter, Rebecca, down the aisle when she got married, but he can’t get out and walk with his grandson. He’s able to keep his job with the Alabama Department of Transportation in Troy because Virginia works in the same office and drives them both. But he’s no longer able to do field work.
“I have to depend on people I trust to get out and do things work-related,” he said. “But I’ve got some good people.”
Murphy saw 21 doctors before her diagnosis in the 1980s at the age of 48. Now 70 years old, Murphy has lived with dystonia for 22 years.
“We went to doctor after doctor ...,” Murphy said. “Nobody had heard of my ailment.”
Murphy has three kinds of dystonia in her neck, eyes and face. Her facial dystonia has gone into remission. She uses a back support to help her sit up straight in church and wears dark glasses to protect her sensitive eyes.
Brannon was 31 when her symptoms first occurred in 2001. She was diagnosed in 2006. Her dystonia affects her neck, face, back and hands. The pain and the fatigue has caused her to miss a lot with her children, ages 12 and 3. But her husband, Tom, has been supportive.
“If I have a day that’s pain-free, it’s few and far between,” she said.
Brannon now worries about the numbness she’s starting to feel in her toes.
“It’s getting worse, I can tell ...,” she said. “I’m hoping for the best, hoping to keep mine under control. Mine is moving, and that’s scary.”
Brannon is not alone in her fear.
“There’s that little bit of uncertainty,” Hornsby said. “Where is it going next and when?”——————————-Want to know more?If you or someone you know is interested in starting a local dystonia support group, e-mail DothanDystoniaSupportGroup@gmail.com
Understanding DystoniaThis week is Dystonia Awareness Week. Alabama Gov. Bob Riley signed a proclamation to support raising awareness about the condition. Here is some information about the different forms of the condition from the Dystonia Medical Research Foundation:
Laryngeal dystonia/spasmodic dystonia - Affects muscles of the vocal cords, making it difficult to speak.
Blepharospasm - Affects the eyelids, causing them to blink uncontrollably or remain closed.
Cranial dystonia - Affects face, jaw and tongue. Causes grimacing, tongue protrusion and jaw closure or opening.
Cervical dystonia/spasmodic torticollis - Affects neck and shoulder muscles, turning the head to the side or forcing the head back or forward. A tremor may be present.
Hand dystonia/writer’s cramp - Causes fingers to curl and the hand and forearm to cramp. Occurs when a person attempts to use the hand for writing, playing a musical instrument or other activities.
Generalized dystonia - Affects many parts of the body simultaneously. Causes cramping and twisting in the feet, limbs and torso.