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Dystonia Doesn't Have to Twist Body and Life Into Knots
Learn about dystonia, its treatment options and a new local support group
LEXINGTON, Ky. (June 8, 2007) − From simple writer's cramp to severe muscle
contractions contorting the body involuntarily, the group of movement disorders known
as dystonias can grip a person's life in unimaginable ways. But new treatment therapies
available at UK HealthCare offer hope to those with dystonia, and the start-up of a local
support group will serve to fill the emotional and medical resource needs of patients and
their families.
Dystonias are the third most common movement disorder behind Parkinson's
disease and essential tremor, and it can affect any age. It causes involuntary muscle
contractions, such as twisting or repetitive movements, and sometimes they can be
painful.
Dystonia can affect many different parts of the body. Early symptoms may
include deterioration in handwriting after several lines, foot cramps, or a tendency of
one foot to pull up or drag. The neck may turn or pull involuntarily, especially when the
person is tired or stressed. Sometimes both eyes will blink rapidly and uncontrollably,
rendering a person functionally blind. Initial symptoms can be very mild and may be
noticeable only after prolonged exertion, stress or fatigue. Over time, the symptoms
may become more noticeable and widespread and be unrelenting, and other times
there may be little or no progression at all.
There is no cure for dystonia. Instead, doctors use medicines, surgery, physical
therapy and other treatments to reduce or eliminate muscle spasms and pain. Other
treatment possibilities include BOTOX® muscle injections and deep brain stimulation.
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"I found it reassuring to get involved with a support group," said Jennifer Heil of
Louisville, whose dystonia makes it hard for her to breathe. Because of her experience
and involvement with the Louisville dystonia support group and her national activity with
them, she's helping to kick off the Central Kentucky Dystonia Support Group, part of the
Dystonia Medical Research Foundation.
"The support group is a place to ask questions, gather information and get to
know others who live with dystonia," Heil said. "It offers things people need to know
when they don't know where else to turn."
The group also arranges one-day seminars with speakers who can offer
information on applying for disability, working with insurance companies and other
matters important to dystonia patients and families.
The Dystonia Medical Research Foundation is an international organization
based in Chicago that was founded in 1976. It raises funds for research and awards
research seed grants to universities. "There is no cure for dystonia, but new treatments
are coming out slowly but surely with the help of new research advances," Heil said.
To learn more about dystonia, join in a free viewing of Twisted, a documentary by
Laurel Chiten. In Twisted, Chiten narrates and connects the stories of Pat Brogan, a
basketball coach and triathlete who developed dystonia after a bike accident; Shari Tritt,
whose whole body is affected by dystonia; and Remy Campbell, an artist who gambled
on a radical form of brain surgery — and won. The film also includes pianist Leon
Fleischer and NPR talk show host Diane Rehm, who both battle dystonia.
Twisted will be shown on Saturday, June 9 at 10 a.m. at the W.T. Young Library
auditorium. Following the viewing, join in a question and answer panel discussion with
UK HealthCare physicians Drs. John Slevin, Byron Young, Sara Salles and Sanford
Archer, who will be available to answer questions about dystonia treatment options
including deep brain stimulation and BOTOX® therapy.
The event also will mark the kick-off of the Central Kentucky Dystonia Support
Group. Contact Jennifer Heil at heilhaus@bellsouth.net for more information about the
support group.
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