1. Chapter 1: The Questions
  2. Chapter 2: Lisa’s Story
  3. Chapter 3: Genetic Links
  4. Chapter 4: Raising Awareness
  5. Chapter 5: What I’ve Learned
Karen Hess

Involuntary Movements

Understanding Tourette Syndrome

Involuntary Movements
Understanding Tourette Syndrome
Chapter 1: The Questions
Photo: Author

        On a rainy Sunday evening in a small, one-bedroom apartment, I laid on a sinky couch gazing at my boyfriend. The wind flowed in from the open patio door, and the scent of wet grass and pavement wafted in. The sun was setting, and a few breaks in the clouds allowed for some amber light to splatter itself across the carpet.

       Colin sat on a chair opposite me, and he was concentrating intensely on a magazine he had picked up off of the ottoman. His hair was matted from the baseball cap he had worn that afternoon and he had one leg pulled over the other, one ankle resting on one knee. Every once in a while he would turn the page, and every so often he would wiggle his nose. It was something I had noticed he did since the first day I met him. It was, to me, adorable. He would contort his face in a way that his mouth almost moved in a circle and his nose scrunched up and his nostrils flared. He did it in the middle of sentences, during long pauses, even before swinging a golf club.

       In this moment of silence, after a long day of tennis and a walk through the park, I decided to tell him how cute I thought this was. It was one of the first offerings we gave to each other—nervous, guarded compliments that precede the truly vulnerable professions of love and wanting a future.

       I said it quickly, and there it hung in the muggy air between us. Colin looked up and shifted in his seat, saying nothing. The rain beat down on the wooden planks of the balcony outside and I felt my skin grow hot with regret. Then, he half-smiled, put the magazine down, and nodded. Looking at me, he started saying something and then trailed off. He started again, and then quietly said, “I have Tourette’s.”

       What initially flashed in my mind were images from movies depicting characters swearing uncontrollably. That’s the impression popular culture has given us. Most notably, I thought of a scene from “Deuce Bigalow, Male Giggolo” where Amy Pohler plays a woman with Tourette’s who has hired Rob Schneider to take her on a date. The two end up going to a baseball game, where her uncontrollable outbursts are interpreted as jabs at the opposing team and cheered by other fans. Before they arrive at the stadium Pohler tells Schneider that she can’t go very many places due to her Tourette’s. Not to mention she also seems to be having a hard enough time dating that she has just paid for a man to take her out.

       I immediately had about a hundred follow-up questions for Colin. I asked him what it felt like, and he said the urges were like an itch in his brain that he needed to scratch. After several more questions were met with short responses, I quickly realized that this was something I would research on my own. I waited until later, when I was alone, to scour the Internet for information. What I did find was vague and didn’t help me understand what it meant to have Tourette’s.

       I waited a few days and called two members of my family who were doctors. I rattled off questions, expecting clear, medical explanations. Neither of them were neurologists, nor did they know much about the disorder. They seemed surprised to hear that Colin had it, because like me, they were used to the overacted representations Tourette’s gets from pop culture. They didn’t know if it was genetic or if there were other symptoms besides tics. Feeling confused, I hung up the phone without feeling any closer to understanding.

       Even after more searching, I didn’t find much else. The little I did find offered this: Tourette syndrome is a neurological disorder that varies. A lot. It can include tics that are movements, and in very rare cases, vocal outbursts. While Tourette’s isn’t extremely common, it also isn’t rare: 3 out of every 1,000 children in the United States have it.

       For many, symptoms are worse during these early years. The disorder seems almost cruel in this way—affecting the brain the most during the time when other children are the most unforgiving of anything that makes you different. As teenagers, those with Tourette’s often find that their tics subside, though not completely.

       At first, my search ended here. Social media was new—Twitter hadn’t yet caught on, Facebook statuses were written in the third person, and my friends kept asking me to join this thing called MySpace. But as social media grew, the world shrank with it. So when I revisited my search, this time using Twitter, I found pages dedicated to Tourette syndrome. There were communities for adults, teenagers, and even parents. These spaces enable those with Tourette’s to connect and provide information and support. I sent messages to these groups to see if anyone would share their experience with me. This is how I found Lisa Croker, the mother of a son with Tourette’s living in Oklahoma.

Chapter 2: Lisa’s Story
Photo: Wikimedia Commons

       Remnants of the old U.S. Route 66, known as the “Main Street of America,” run right through Oklahoma City. In many ways, it’s like most cities in America—a sprawling suburban area, a major reinvestment in the downtown area, and a few big name employers providing a steady stream of jobs to the city.

       It’s also where Lisa and her husband have raised their 16-year-old son (who will not be named here at Lisa’s request). Lisa responded to my message on @TSParentsOnline. Through email and phone, she shared her family’s experience with me. She told me that she first noticed signs when her son was in the fourth grade at their local elementary school. He sniffed and cleared his throat often. Lisa was worried, but she pushed those feelings aside and chalked it up to allergies or just a bad habit her son had developed.

       As time went on, these things continued and Lisa’s worry grew. She thought something was off, but her requests to the public school to have her son evaluated were not granted. When her son was in seventh grade, she took matters into her own hands. They visited a pediatric neurologist, who diagnosed her son with other disorders including ADHD, a tic disorder (but not Tourette’s), depression, and anxiety. It wasn’t until ninth grade, after constant sniffing and eye blinking, that her son was officially diagnosed with Tourette syndrome. He has developed other tics including throat-clearing, face-scrunching, and fist-making.

       Her son has taken medicines for other disorders, but not Tourette’s. Nonetheless, he has seen an improvement in his tics. Lisa thinks this is due to the medication alleviating his stress, something that seems to aggravate tics.

       Common medications prescribed for the tics associated with Tourette syndrome include anti-depressants. Although Tourette’s has been recognized since the late 1800s, doctors have never understood exactly what causes it. It could be genetic, or related to brain abnormalities that involve the chemicals dopamine and serotonin. Even with today’s medical advances there is still so much we don’t know about the brain.

       What Lisa told me about stress sounded familiar. I saw this impact of stress for the first time when I introduced Colin to my parents. A few months after we met and after spending three hours cheering on the Milwaukee Brewers, we made a stop in the sleepy suburb I grew up in.

       When we pulled into the driveway, my parents were ready: fruit tart on the table, a full pot of coffee, and everything in the house glistening more than usual. We took a seat in the kitchen and started making small talk—about the game, where Colin grew up, his new job.

       And for the first time, I noticed a change. He blinked more often, wiggled his nose more often, and brought his hand to his face almost constantly. The conversation went smoothly, and as we continued to talk and laugh, these repetitive actions subsided.

       It happened other places as well—at work parties, at weddings, and family get-togethers. There were places where these tics were noticeably absent. Over time, they rarely appeared when we were alone. Even now, during long weekend when we shut out the world and stay in our apartment, Colin’s face is still and his blinking slow.

Chapter 3: Genetic Links
Photo: Wikimedia Commons

       While introducing Colin to my parents helped me to better understand Tourette’s, so did meeting his family. Just a few weeks later, we packed up his rusty, red car and drove three hours north, through jagged hillsides and into lowlands surrounded by towering bluffs. The city of La Crosse hugs the Mississippi River, the dividing line between Wisconsin and Minnesota.

       We drove up a steep bluff, past houses dangerously nestled into the dirt and rock, and down the driveway. We grabbed our bags and went inside. Colin’s mom and sister were standing in the kitchen and greeted me with a hug. The resemblance was uncanny. Colin’s mom had his exact nose, his sister, his same eyes. Then I met Colin’s dad. They shared some similarity that I couldn’t quite put my finger on. I noticed that he often blinked and flexed his jaw, the way you would expect someone to do after they just said, “Oh no!” It was methodical and I soon grew accustomed to it. He openly talked about it, even making fun of himself, which immediately put me at ease.

       I noticed his sister did not do this, or any of the tics I had seen in Colin. Her nose was still, her blinking steady, her jaw relaxed. I couldn’t help but think there must be a genetic reason for a father and a son to both do this, but for a sister not to.

       Until recently, no one knew for certain if Tourette’s was genetically linked. There were cases where a parent and a child had it, but the cause for Tourette’s has never been understood enough to say for certain. This past January, researchers at Yale made a breakthrough.    

       They found that a rare genetic mutation disrupts histamine production in the brain. Although most people know histamine is related to allergies, it is actually involved with 23 different physiological functions. These include wake/sleep regulation, memories and learning, and digestion. Researchers think it is this mutation that throws the neurotransmitter dopamine out of whack, causing tics. This has been the first glimmer of hope into understanding a possible cause for Tourette’s (though there may be several), and the first guiding light for better treatment.

       In fact, clinical trials are underway at places like Mount Sinai in New York City. Here, researchers are recruiting patients for a six-month study on drugs that target histamine receptors in the brain. The news is hopeful but it’s still too soon to know if any resulting forms of treatment will be more effective.

       Existing medicines have made a huge different for some with the disorder. Others with mild cases have never sought treatment. They’ve accepted their tics the way we all accept things about ourselves—the things that make us unique, the things that make us feel different. Aside from treating the symptoms, many have chosen to address another challenge— a population that doesn’t understand them. 

Chapter 4: Raising Awareness
Photo: Wikimedia Commons

       Laura Beljaars is one of these individuals committed to raising Tourette’s awareness. Like Lisa, she responded to my online messages, but on a different page: @Teens4TS, a group specifically for teenagers and young adults. Laura maintains a strong online presence—running a website, video blogs, and even the Twitter account @TouretteProblems. This is especially impressive considering Laura is a 25-year old recent college graduate. She does all of this from just outside Eindhoven, a typical university city in the south of Netherlands. Although it’s one of the oldest cities in the country, the city’s boxy Dutch architecture and towering cathedrals are intersected by the modern flair of a booming tech industry.

       Through her online presence, Laura openly discusses her struggles with Tourette syndrome, ADHD, and autism. Her online posts include frustrations about feeling sick, tired, and not having control over her own body. When I asked her what was challenging about Tourette’s, she told me her biggest struggles have been energy and concentration problems. For Laura, several antipsychotic drugs have been effective at helping her sleep, relieving obsessive thoughts, and tics. She says Exposure Response Prevention therapy, a kind of therapy that teaches the individual how to control their actions, was the most helpful.

       Laura has made it her mission to educate others about the syndrome. In her videos she talks about what Tourette’s is and how it affects her. In one video she describes how blinking light or something touching her back triggers tics, and in another she describes how she feels Tourette’s has made her more creative. In her spare time she volunteers for the Dutch Tourette Syndrome Association.

       Unfortunately efforts to educate others are not always well-received. Lisa Croker told me that one year when she handed her son’s new teacher a fact sheet on Tourette syndrome, and the teacher immediately tossed it in the trash. Her son has been accused of being deliberately disruptive, and harassed by other students. Some teachers have been accommodating and open to learning about Tourette’s, but some have not. Lisa’s son has even been hospitalized for stress after a particularly hard time in school. They have chosen to switch schools next year. 

Chapter 5: What I’ve Learned
Photo: Wikimedia Commons

       The struggles that Lisa and Laura described touched me, but not as much as the positivity they conveyed. Lisa shared that what she and her son have endured has brought them closer together, and even made her more humble and sympathetic. She calls her son her hero. Laura also feels that although Tourette’s makes life hard, it also makes life unique, and she sees the good in it.

       After hearing the experiences of Lisa and Laura, I feel I’ve simultaneously gotten closer and further from understanding Tourette’s. It’s so varied, so individual. According to the Mayo Clinic, having Tourette’s makes you likely to have other conditions that they say are related: like ADHD, OCD, sleep and anxiety disorders, learning disabilities, and depression. It’s often hard to separate these conditions, making Tourette’s harder to distinguish.

       I’m grateful for having had the opportunity to hear from these individuals. I’m also grateful for the efforts being made to educate the public about the disorder. The hope is that one day people like me won't have to struggle to find information because the world will understand it. The boyfriend that first sparked my investigation has since become my husband. The fact that he has Tourette’s isn’t something I would change. The nose wiggle I first found adorable six years ago still gets me every time.