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'I'm a people person'

Man thrives in spite of Tourette's syndrome

Man thrives in spite of Tourette's syndrome

March 03, 2003|by KATE COLEMAN

katec@herald-mail.com

Ryan Mozingo was a 7-year-old Old Forge Elementary student when a school psychologist recognized that his eye blinking and head shaking were more than what his family called his "habits."

She pointed him and his family in the right direction, Mozingo, 23, says.

He was diagnosed with Tourette's syndrome, an inherited, neurological disorder characterized by tics, involuntary movements and vocalizations that come and go over years, according to information on the National Institute of Neurological Disorders and Stroke Web site., www.ninds.nih.gov.

The cause of Tourette's is not known, but research points to an abnormality in the gene that affects the processing of chemicals in the brain that transmit signals between nerve cells, according to National Institute of Neurological Disorders and Stroke.

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The disorder is named for Georges Gilles de la Tourette, a French neuropsychiatrist who identified the disorder in the late 1800s, according to Tourette Syndrome Association Inc.'s Web site, tsa-usa.org.

Tourette's syndrome can affect people of all ethnic groups. Males are affected three to four times more often than females, according to National Institute of Neurological Disorders and Stroke.

Because so many cases are undiagnosed, estimates of the number of people affected are hard to come by, says Jennifer Heinz, executive director of the Tourette Syndrome Association of Greater Washington. National Institute of Neurological Disorders and Stroke estimates that 100,000 Americans have full-blown Tourette's. As many as one in 200 people exhibit some expression of the syndrome - chronic multiple tics, for example.

The list of possible motor and vocal tics is long. Tics periodically change in number and frequency and can include facial grimaces, head jerking, foot tapping, mouth stretching and pulling or chewing on clothes. Throat clearing, grunting, sniffing, spitting, squeaking, yelping, clicking and barking are among vocal tics, says Randolph S. McKann, Washington County Public Schools psychologist.

There is still a lot of stigma associated with the disorder, Heinz says. "We spend a lot of time disputing misrepresentations."

Coprolalia, involuntarily shouting obscenities is the stereotype of Tourette's syndrome, but it's actually not typical, Heinz says.

Having Tourette's syndrome was hard, Mozingo says. He would sometimes joke around about it, but usually he would tell people "I have Tourette's syndrome," and try to be the educator.

As he grew into adolescence, Mozingo's tics, including shouting and head, shoulder and leg movements became more frequent.

He's been on medications since he was 7, and although they help him, sometimes the side effects are worse than the shaking, Mozingo says.

Although not all people with Tourette's have other disorders, many also have problems with obsessive-compulsive and attention-deficit-hyperactivity disorders. Learning disabilities are not uncommon among people with Tourette's.

How do individuals and their families deal with a complex disorder that exhibits itself in behaviors that are easily misinterpreted?

Tics, which often seem deliberate, can be suppressed but not forever, experts say, and that is difficult for people to understand. Heinz compares it to trying not to blink. You may be able to refrain for a while, but eventually, you have to blink. Eventually the tic happens.

"Information is the first step," McKann says.

People with Tourette's and their families need to understand the disorder and communicate information so they can get the help they need.

The school system can evaluate a child's needs, providing special education services if a negative impact on educational performance is demonstrated, McKann says. Some accommodations are simply accomplished. Providing a "tic pass," permission to leave the classroom to go to a place where the tic can be released, can help. Some kids need extra time or help in organizing their work. McKann recommends that parents of a child with Tourette's talk to the child's teacher before the school year starts.

McKann offers programs to help school personnel understand Tourette's. Heinz also presents information to increase awareness, helping people, from elementary school kids to adults, to understand the disorder.

The overriding theme is one of accepting differences, she says.

The worst response is to tease, Heinz says. A good response is to tell the person with Tourette's syndrome that you understand, it's OK or just ignore the outburst.

Heinz has found that as many as nine out of 10 kids with Tourette's want people to ignore it.

Mozingo says he's always been pretty lucky with friends. "I'm a people person," he adds.

A philosophy he says he picked up in a high school freshman English class also helps.

"Life is 10 percent what happens to you and 90 percent what you make of it," Mozingo says.

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