Living with Tourette's: Minnesota woman, Richardton student describe challenges of managing disorder
MOORHEAD, Minn. — Margot Brenna had hiccups her sophomore year of high school. The whole year.
But, “I knew it wasn’t hiccups; it didn’t feel like a hiccup to me. It just sounded like one,” she said.
Turns out, Brenna’s “hiccupping” was a vocal tic, a symptom of Tourette syndrome.
Part neurological and part psychological, in its most severe form, Tourette’s affects an estimated 200,000 Americans. But, according to the National Institute of Neurological Disorders and Stroke, as many as one in 100 exhibit milder and less complex symptoms.
Russell Ziegler, whose 15-year-old son, Marshall, has Tourette’s, said it’s more common than you’d think.
“I think a lot of people have Tourette’s and they don’t even realize it,” the Richardton man said.
When most people think of Tourette’s, they think of aggressively blurted-out obscenities. But only about 10 percent to 15 percent of people with Tourette’s exhibit coprolalia (randomly uttering socially inappropriate words, such as swearing).
Dr. Tanya Harlow, a neurologist and movement disorder specialist with Sanford Health in Fargo, said most Tourette’s patients have some combination of motor and vocal tics, both simple and complex. Motor tics usually come first, and might include neck twitches, shoulder shrugs and the opening and closing of hands, like Marshall’s. Vocal tics can be any sort of sound, such as a sniff, cough or grunt.
“Everybody’s is different. You’ll never see two people whose tics are exactly the same,” Harlow says.
Brenna’s hiccup sounds were followed by the words “yeah,” “bye” and “rawr” (like the sound a dinosaur makes), earning her the nickname “The Raptor” among her friends at Concordia College.
While home during a break from school, Brenna’s brother noticed her tic words and encouraged her to try to have fun with them to help her cope with the disruption they caused.
Brenna still has the shirt he gave her that says “RAWR means ‘I love you’ in Dinosaur.”
“I coped with it by making it fun,” she says. “I made fun of it instead of letting it take over. I think my attitude helped a lot with it.”
The jokes also give Brenna an opportunity to explain what Tourette’s is.
“There are so many different types of people, and we all have our own little things going on in life, and this just happens to be mine,” she says.
Sometimes, the National Institute of Neurological Disorders and Stroke says, instead of involuntary curse words, Tourette’s patients repeat the words and phrases of others, which can make life difficult.
“If you know somebody with Tourette’s, you know it’s not their choice to be making the noises or to be fidgeting,” Russell Ziegler says.
In the most severe cases, people can actually hurt themselves with their motor tics by doing things like rupturing disks in their necks, Harlow says.
And, an individual’s personal arsenal of tics can change, with age, stress, anxiety and excitability, as well as with external triggers, like being around other people with Tourette’s.
“Tics are never constant,” says Marshall Ziegler, a freshman at Richardton-Taylor High School in Richardton. “They keep cycling. There are some tics that you’ll have for a while, and there are some tics you’ll have for a couple days a week.”
Brenna’s get worse with caffeine.
“If I’m drinking a Diet Coke or something, I’ll get a couple of them,” she says.
People with Tourette’s are more likely to have attention and learning disabilities, as well as problems with depression, anxiety and obsessive-compulsive disorder, but the diagnosis has no bearing on their intelligence.
According to the National Alliance on Mental Illness, about 50 percent of Tourette’s patients have problems with inattention, hyperactivity and other symptoms characteristic of attention deficit hyperactivity disorder.
Marshall Ziegler has ADD and some symptoms of OCD; Brenna had attention problems and struggled with depression and anxiety in college.
“Anxiety, depression and Tourette’s are kind of all in the same part of the brain, so it just all hit me,” she says.
Dr. Harlow says certain drugs can help reduce tics, but they don’t eliminate them completely, and a common side effect is drowsiness.
Sometimes Tourette’s symptoms improve when coexisting conditions, like ADD, are well-managed.
Although symptoms can last a lifetime, they’re usually at their worst in the early teens, with improvement in the late teens and into adulthood.
“Overall, time is the best treatment because you’ll outgrow your tics as you get older,” Marshall Ziegler says.
That was the case for Brenna, whose symptoms started in high school and reached their worst in college. Now her symptoms are minimal and seldom-occurring.
“It was so bad I would ask, ‘Is this ever going to stop? Am I ever going to have a normal life and a normal job?’ Thank God it did,” she says.
Becoming an ambassador
Marshall Ziegler’s case is more “typical” of Tourette’s than Brenna’s.
According to the NINDS, the first signs of the disorder almost always start between the ages of 3 and 9 (for him, it was 6 or 7), and it’s three to four times more common in males than in females.
Although Tourette’s tics are involuntary, they can sometimes be suppressed, concealed or otherwise managed.
Ziegler’s dad says his son, who’s involved in speech and drama at school, recently had to stand still for a period of time as part of a play while other people were talking. He was able to do it, but later once he relaxed, his tics came back.
“As Marshall’s gotten more mature, he’s been able to control his tics more,” his dad says.
He’s also become more educated about his disorder. Last year, he traveled to Washington, D.C., to attend TSA Youth Ambassadors Leadership Training.
Spending all day in a room full of kids with Tourette’s wasn’t easy.
“When a person with Tourette’s talks about Tourette’s, their tics come out more, or if they’re with somebody that has tics themselves, they could ‘steal’ those tics from that person and their tics just happen more. So when you have all those kids that have Tourette’s in the same room all day, you can just see the level of tics increase as the day goes on.”
Marshall Ziegler wants to use the skills he gained in the nation’s capital to talk to North Dakota students and teachers about what it’s like to live with Tourette’s in hopes of preventing other kids from being teased, like he was in elementary school.
It was difficult for his parents to watch Ziegler get picked on, but the situation improved after he moved to Richardton, where he’s more accepted.
Education helps, says Russell Ziegler, who is the principal at Richardton-Taylor.
“Once the kids know about it and know what to expect, and know that it’s out of their control, it gets a lot better,” he says.
But if he could, Marshall Ziegler wouldn’t change a thing. It’s a part of who he is.
“I mean, sure, it’s something that’s hard to control, and it’s something that you can be easily made fun of for, of course, but if they were to come out with a cure for Tourette’s syndrome today, I wouldn’t want it,” he says.