Jackie Nau, living with Tourette’s in Cedar Rapids, champions kids

CEDAR RAPIDS — Jackie Nau was 22 years old when she was diagnosed with Tourette syndrome, a neurological disorder characterized by repetitive, involuntary movements and vocalizations.

That diagnosis more than 30 years ago was “liberating,” she said. After years of her childhood and adolescence spent getting in trouble for the tics other people thought were within her control, she had an answer for why she is different.

Today, Jackie, 56, and her husband — semiretired pediatrician Dr. Scott Nau, 71 — work with kids diagnosed with Tourette’s and their families to help them know they’re not alone in navigating the often misunderstood disability.

Common tics include repetitive eye blinking, shoulder shrugging, repetitive throat-clearing or grunting sounds.

Jackie said her tics make her “drop things, spill things, lose things and break things all day every day.” Just last month, she had neck surgery as a result of 50 years of tics. Last summer, she began having “shooting pains” down her arms. Her arms would go tingly and numb. She lost grip strength in her hands and developed chest pain.

An MRI scan — which shows images of the organs, bones, muscles and blood vessels — was “brutally honest” about how much damage had been done because of her tics.

“It’s taxing and exhausting and takes a toll on your body, mind and spirit,” Jackie said.

Even so, Jackie said she prides herself on being optimistic and relies heavily on her faith. She is an advocate for people with disabilities and teaches kids how to advocate for themselves, too.

Scott sees some of the kids as patients at Mercy Pediatric Clinic in Cedar Rapids. With the family’s permission, Jackie joins him. “I can’t get a word in edgewise at that point,” Scott said with a laugh.

“Kids are so excited to meet me because they too haven’t met anyone else with Tourette’s up until that point,” Jackie said. “I feel like a rock star because they look at me like. ‘You have tics, too.’”

About 80 percent of kids experience milder symptoms or that go away altogether as they grow into adulthood, Scott said. But Jackie wants kids to see that if they continue experiencing symptoms into adulthood, they can still go on to have a great life.

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“It’s difficult, there’s no doubt about it. It’s not for sissies. But they can still get married, have careers, follow their dreams and play sports,” Jackie said.

Jackie was in her 40s before she met another person with Tourette’s. “It’s an incredibly lonely existence,” she said.

She was 6 years old when she started exhibiting tics like clearing her throat, shrugging and blinking. She was sent to a psychologist who told her parents that she could stop if she really wanted to.

“A huge misconception,” she said.

For Jackie, living with Tourette’s can be “hell,” she said. Other disorders that often go hand-in-hand with Tourette’s are obsessive-compulsive disorder, attention deficit hyperactivity disorder and anxiety. It’s a “toxic brew” that can be “debilitating,” Jackie said.

“If I’m awake, I’m in battle,” said Jackie, as she struggles to navigate rituals, obsessions and compulsions and a body that “has a mind of its own.”

The Naus often become friends with the families that start out as Scott’s patients.

With children’s permission, they will visit their school and talk to their peers and school staff about the syndrome.

“The staff visits are really enlightening,” Scott said. “It’s not uncommon for them to be in tears because they completely misunderstood. It’s incredibly valuable.”

They talk to the students about famous people like Billie Eilish, who has Tourette’s.

A big part of the program is teaching kids “self-advocacy,” Jackie said.

Kids whose peers the couple’s visit to talk about Tourette’s often say they experience less bullying afterward. There are “friends who start standing up for them,” Jackie said.

A lot of Jackie’s advocacy started by advocating for her son, Samuel, who died in 2010. Samuel had special needs and “wasn’t always treated the same as other kiddos.”

“Everyone deserves dignity and respect. He wasn’t always shown that, and I wasn’t always shown that,” Jackie said.

Her career has spanned cosmetology, fitness and as project coordinator for Iowa LEND (Leadership Education in Neurodevelopmental and Related Disabilities). Jackie is on the board for The Arc of East Central Iowa. She previously was on the board of Disability Rights Iowa and works with the Tourette Association of America.

To get in touch with Scott and Jackie Nau, call the Mercy Pediatric Clinic at (319) 861-7900.

Comments: (319) 398-8411; grace.king@thegazette.com