‘It’s so much more than embarrassment’: Eastern Iowa Tourette Syndrome activists call for education, kindness

CEDAR RAPIDS, Iowa (KCRG) – A semi-retired doctor and his wife are helping patients navigate Tourette Syndrome.

Tourette Syndrome is characterized by tics. These are compulsive movements or sounds people can’t control. Less than 1% of the population has the condition.

Dr. Scott Nau thought he knew about Tourette Syndrome from his medical training. However, he said his real “degree” in the field came from his marriage to Jackie, who has Tourette’s.

Jackie said having Tourette is “so much more than embarrassment and humiliation,” although she added those definitely “rank way up there”.

“I spent a year and half of my life grabbing my crotch, and there’s no way you can put a shine on that, especially for a woman,” she said. “That’s while I had a great career of cutting hair, and it makes you feel undignified no matter where I go.”

Obscene gestures and unusual sounds are embarrassing, but Jackie said what people don’t understand is that Tourette Syndrome is also anxiety and physical pain. After a lifetime of head and neck tics, Jackie had significant arthritis issues in her neck and got neck surgery a few months ago.

“I got a tiny scar there, and that was pretty brutal to go through that, and to know that it came from this disorder that I’d give anything not to have.”

Jackie said the pain and the embarrassment were made all the worse by the fact she didn’t know anyone else like her until her forties.

“When I mostly retired a couple of years ago, I realized that my patients who did have Tourette Syndrome really didn’t have the support that they need,” said Dr. Scott Nau, Jackie’s husband. “And so we decided to team up.”

With a parent’s permission, Jackie will sit in on meeting with doctor and patient. The couple goes out to lunch with patients, and they will even go to kids’ schools and explain Tourette Syndrome to their classmates and teachers.

“Oftentimes, peers become warriors for their friends if they know what’s going on,” said Scott.

Two patients the Naus have worked with are Rachel Peters from North Liberty and Torrie Davis from Cedar Rapids.

Davis was diagnosed in 2022, and Peters not until a couple of months ago.

“I will go to the bathroom and have to cry out of embarrassment because, you know, it’s very—it’s very hard,” said Peters.

Both girls said the help from the Naus has been literally life changing.

“Jackie is like a second mom,” said Davis. “She’s a role model.”

Jackie herself wishes for friendship like these girls have—someone else with Tourette Syndrome who can truly understand.

“I long for a female adult friend in my orbit,” she said.

Still, she’s determined to help younger generations avoid the isolation or the shame she has known.

“I know that I was born this way for a reason, and God has entrusted me to get the message out.”

Patients do not need a referral to see Dr. Nau about existing or suspected Tourette’s syndrome. Call Mercy Pediatric Clinic at (319) 861-7900 to make an appointment. He can usually see them within a few days.

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