Local syndrome sufferer wants to help next generation
Aug. 24, 2010 at 3:24 a.m.
Sharee Wagner's fingers nimbly tap a combination of ivory keys to compose "We Are The World."
The concentration with timing and hand-eye coordination sometimes helps with her Tourette's syndrome, but at times, playing the piano can be a curse.
"I can't remember never not having it," Wagner said. "I don't know what it's like not to have Tourette's."
The 48-year-old first showed tics, an involuntarily erratic and sometimes violent physical and verbal action, when she was 5 years old, but wasn't diagnosed until she was 15.
A local piano teacher, Wagner has seen signs of Tourette's in some students in the past, but with the start of school, she wants parents to know there is hope.
"A whole generation is going to come into schools...and some of those are going to have tics," she said. "Those kids need to know there is a name to what they're doing."
LIVING WITH TOURETTE'S
Wagner flexes and rolls her foot - it's one of the many ways she copes with a tic being too obvious.
Despite the syndrome, Wagner has lived life as comfortable as possible - married with two kids.
But growing up wasn't easy.
"My childhood was a blur," Wagner said.
Wagner recalls being called names like "weirdo," because of her tics.
At the time, diagnosing the syndrome wasn't easy because of lack of research.
Today, at least 27 percent of parents have noticed tics in their children, according to a 2009 Centers for Disease Control report.
Researchers with the National Survey of Children's Health phone interviewed 92,000 households between April 2007 and July 2008, according to the report.
However, it's not always the tics that bother Wagner, it's the other diseases branching out of the syndrome that have affected her.
She has had complications with obsessive-compulsive disorder, depression and anxiety, just to name a few.
The diseases that accompany the syndrome are usually also neurological.
For years, the only answer to subdue the tics was medication, but even that sometimes did not work.
"I was on 12 at one time," she said. "It's everything that comes with Tourette's that is so hard."
Sometimes the stigma behind Tourette's is more difficult to deal with, she said.
Movies, skits and the mass' stereotype that people with Tourette's have profane outbursts is overdone and incorrect and may worry newly diagnosed children about being made fun of, she said.
Coprolalia, or verbal tics, is a small subpopulation of those with Tourette's.
The tics usually involve involuntary swearing, or subconscious thoughts that surface.
Only about 10 percent of Tourette's patients have those tics, according to the National Institute of Health.
"It's very rare," Wagner said. "I haven't known anyone with Tourette's who has done that."
HOPE FOR TOURETTE'S
Wagner is done taking medications.
The side effects are unbearable and it doesn't always subdue her tics, she said.
She has found a new method to deal with her tics and for the past three weeks it has been helping, she said.
She's receiving acupuncture.
"If you miss one you're screwed for days," she said about taking pills.
For 20 years, Dr. Layne Towery has done chiropractic and acupuncture work.
Wagner is one of his newest patients.
"She's been plagued with it for a long time," he said. "She's finally found something that's helped her in a significantly short amount of time."
Towery deals with a lot of patients with neurological disorders, he said.
The results of acupuncture vary between each patient, he added.
With Wagner, the sessions took her off several medications, got rid of headaches and tension, and lessened the tics.
"It's an alternative treatment," he said. "The worst case scenario is you don't get better."
She receives three treatments a week.
Thin needles are placed throughout specific areas of the body to relieve certain tensions.
In three weeks, Towery has already noticed her passion to help others understand the syndrome, he said.
She doesn't want kids to take several medications or feel like outcasts, she wants them to know everything is OK, he said.
"She is very adamant about getting word out. If you had a 12-year-old kid with it, would you want them on 10 or 12 medications," he asked.