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Sunday, October 27, 2002

Alive and well


Tourette's outbursts can be controlled to a degree

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Many of the questions I receive via mail or e-mail can be answered simply and quickly. A letter from a Cincinnati reader, however, was more complex.

She writes:

A relative of mine is getting married next year. Her cousin is married to a man who has Tourette's syndrome. At another family wedding, this man disrupted the ceremony by repeating the "n" word over and over again. This was made worse by the fact that several African-American couples were seated around him.

My relative is worried about the same thing happening during her wedding. Is there a polite way of handling this? She does not want to hurt anyone's feelings, but I'm sure you can understand why she is concerned.

Please give us any advice you can.

TOURETTE'S SYNDROME
While Tourette's syndrome can't be cured, it can be treated. Often appearing in combination with other neurological disorders such as attention deficit disorder and obsessive compulsive disorder, it is sometimes overlooked.

For more information, contact the Ohio chapter of the Tourette Syndrome Association: (800) 543-2675.

The annual Tourette Syndrome Association conference will be Friday-Nov. 3 in Alexandria, Va. For registration information, contact the national Tourette Syndrome Association: (718) 224-2999; www.tsa-usa.org.

Named for Georges Gilles de la Tourette (1857-1904), the French neurologist who first described it, Tourette's syndrome usually is identified in childhood and comprises a variety of motor and vocal tics. Muscle spasms, nervous twitches, grunts, barks, or uttering inappropriate words are possible manifestations.

"The racial slurs or obscenities represent only about 10 percent of the people with Tourette syndrome," says a spokesperson for the national Tourette Syndrome Association (TSA), based in Bayside, N.Y. "Unfortunately, that's the characteristic most publicized."

Jean Reardon, president of the Ohio chapter of TSA, says that while there is no guarantee that a person prone to such outbursts won't have them, motor and vocal tics can be controlled to some extent.

"A child can learn to suppress the tics while in school," she says, "and then relax and let go at home."

Medications can help, as can working with a mental health professional.

The bottom line, though, is that if you have Tourette's syndrome, you simply can't be counted on not to exhibit quirky behaviors just because it's someone else's special occasion.

At the upcoming national TSA conference, the hotel has been advised to give each guest a letter describing Tourette's syndrome and thus minimize surprise and discomfort for the uninitiated passersby. Ms. Reardon suggests a similar approach for the wedding planners.

"Information about Tourette and the man who has it could be included in the wedding invitations," Ms. Reardon says. "It could be pointed out to guests that his outbursts don't mean that he's a racist."

Hmmm. It's a hard call, but here's my take:

First, if the man prone to the racial outbursts is a close enough member of the family that the wedding just wouldn't be right without him, I'd try a combination approach. He knows he has a tendency to blurt out racial slurs. If he makes a concerted effort to suppress his coprolalia (as it is called) during this special ceremony and - just in case - guests are prepared in advance, it may be a win-win solution for everyone.

If, on the other hand, he is being invited only out of social obligation, I'd opt to cross him off the guest list - or maybe compromise by inviting him to the reception only.

Distributing disability-related information with wedding invitations might be a good idea if he's the groom - but for a distant relative, I'd err on the side of selfishness.

It's your wedding. If you're lucky, you'll only have one - and it shouldn't be spent worrying about the behavior of one person.

Contact Deborah Kendrick by phone: 673-4474; fax: 321-6430; e-mail: dkkendrick@earthlink.net.



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