Alabaster resident founds dystonia support group

Published 12:00 am Tuesday, May 23, 2006

Dystonia Awareness Week is June 4-11 and Shelby County residents are affected.

What is dystonia?

According to the Dystonia Medical Research Foundation: &8220;Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures.

&8220;Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face or vocal cords.&8221;

Linda Cannon-Mott, a member of Westwood Baptist Church in Alabaster is founder, leader and director of The Dystonia Support Group of Birmingham.

The Alabaster resident has 30 years experience living with dystonia.

She said recently that dystonia is a rare neurological disorder that affects both children and adults. And more than 300,000 people in North America suffer from some form of dystonia.

The support group she leads includes 50 members representing 11 counties. And 11 of the group&8217;s members come from Shelby County.

The group meets at HealthSouth/ Lakeshore Rehabilitation Hospital (Lakeshore Drive) 3800 Ridgeway Drive, Birmingham, AL 35209.

Meetings are held the third Saturday of every month at 10 a.m.

Ken Williams, makes his home in Shelby County off Caldwell Mill Road in an area called Heatherwood.

He is business leader, treasurer and a director of the group. And he too has dystonia.

He said recently, &8220;We don&8217;t have a Michael J. Fox (spokesperson for Parkinson&8217;s) with dystonia, so we are trying to spread the word and raise funds for medical research through our organization&8221;.

Cannon-Mott said originally their group was composed of all Alabama residents, now she says members attend from Tennessee and Texas.

She said Gov. Bob Riley is expected to proclaim National Dystonia Awareness Week for the state. And she said the Alabaster/Pelham Rotary Club recently donated $500 for research to find a cause and cure for the disorder.

She said the money was sent to the Dystonia Medical Research Group.

Cannon-Mott also said the group would participate in a health fair at Brookwood Mall May 31.

Williams the group will distribute educational materials to hundreds of people. He said every Shelby County library has a counter-display of bookmarks provided by DSG that explain the six forms of Dystonia.

Cannon-Mott also said an attorney from Maine who developed generalized dystonia at the age of 11 was expected to speak to the group during the month of May.

Cannon-Mott&8217;s group celebrated its first anniversary in March, and its bookmarks are now in 80 libraries across the state and all libraries in Shelby County.

Dr. Cheryl Goyne, a neurologist who specializes in pain management with the Simon- Williamson Clinic in the 1022 Tower, Alabaster, said she sees dystonia patients in her practice.

She said, &8220;dystonia is under diagnosed and under treated.&8221; She said it is also a painful condition for which the pain is under trated in that partients don&8217;t always ask for help with their pain.

She noted that BoTox which helps with the muscle posture also helps with the pain.

Cannon-Mott said her group raised $15,000 last year for a cause and cure.

For more information contact Linda Cannon-Mott at 663-7498 or 886-4461.

Web sites for the group include and