Blake Cotton was riding through McAdenville looking at the Christmas lights with members of his church group when he noticed a policeman directing traffic. Suddenly, shy, quiet, introverted Blake began to make loud, obnoxious pig noises: you know, “Oink, Oink.” As the policeman shot an angry glance towards the car, Blake’s fellow passengers, red-faced and mortified, furiously rolled up the car windows, while Blake continued grunting the obnoxious sound. Despite what it may sound like, Blake says he’s never been the class-clown type. In fact, the less attention aimed in his direction the better. Blake says the McAdenville episode, along with countless others, was beyond his control, and it’s all because of a strange and unusual disorder that is widely misunderstood: Tourette’s Syndrome.
Cotton first noticed something was wrong when he was about 14. It started with uncontrollable twitches in his arms and neck. The twitches were relatively minor and infrequent, though, and didn’t seem like much cause for concern.
“When his arms twitched he would sort of play it off, like he was adjusting his cuffs or moving to scratch his head,” said Catherine McMillan, Blake’s mom. “It really wasn’t that noticeable.”
By the time Blake started his junior year at Gaston Christian School, however, the twitching had become more frequent and pronounced. Even more troubling was that Blake began to blurt involuntary and sometimes obscene verbal outbursts. A battery of physical and neurological tests followed. A few weeks after his 16th birthday in 1998, Blake was diagnosed with Tourette’s Syndrome (TS).
“I had no idea what it was,” Blake said, who is now 20 and a sophomore at Mars Hill College near Asheville.
Blake and his mom searched in books and on the Internet to find out more about this baffling disorder that, for someone like Blake who was already shy and introverted, made most social situations nearly unbearable.
What Blake and his mom discovered is that Tourette’s Syndrome (often also called Tourette Syndrome) is an inherited neurological disorder that produces repeated involuntary utterances and body movements. The symptoms of TS generally appear before the age of 18, usually between 7 and 10 years of age. Typically, symptoms begin with motor tics (brief, repetitive, purposeless movements of muscles), including eyebrow raising, nose flaring, mouth opening, throat clearing, head shaking, teeth gnashing and stamping and kicking. Patients also make uncontrollable sounds, called vocal tics. These include grunting, barking, belching, speaking unintelligibly, and involuntary verbalizing of vulgar words. Tics usually occur multiple times each day, and the location and type of tics may vary considerably over time.
Tourette’s Syndrome affects people of all ethnic groups, although males are affected three to four times more often than females. It’s estimated that 100,000 Americans have full-blown TS, and perhaps as many as one in 200 show a partial expression of the disorder.
As is often the case in people with TS, Blake also suffers from other disorders. He was diagnosed with a learning disability when he was in second grade, and later with obsessive compulsive disorder (OCD), a severe form of anxiety. Over time, Blake’s different disorders became intermingled, feeding off each other and making his daily existence a real struggle. In person, Blake is shy and almost childlike, with remnants of adolescent acne on his broad features. But at 5′ 9″ and 230 pounds, he’s no kid, and says that in high school he often used his size to his advantage.
“I was always about twice the size of the people I associated with, so most of them didn’t tease me about my Tourette’s,” he said. “I’m actually a fairly nice guy. But I can intimidate people. I’m real good at it.”
“He has this scowl, so people won’t make fun of him, and he likes that idea,” Catherine said. “It’s a defense mechanism.”
Blake, comforted by the presence of his mom, opens up during our conversation to display a clever sense of humor, particularly about his struggles with TS.
“If you can’t laugh about it you’ll go nuts,” he said. “If you’ve got a disorder, Tourette’s is one of the most amusing you can have.”
Surprisingly, both Blake and his mom seem to enjoy relating stories about his Tourette’s, and say that in many ways, because Blake must often explain to classmates and friends what TS is, the disorder has brought him out of his shell a little bit. Blake said that his verbal and physical tics are often influenced by the power of suggestion, or sub-conscious thoughts. Both doctors and TS sufferers have compared the physical and vocal tics to a hiccup, in that seconds before a tic occurs, there is usually an anticipatory sensation. Most report that with medication and practice, they can suppress the tics, but it’s physically and mentally draining, and over time the tics build up to a point at which they have to be released, usually in a single, rapid-fire episode.
“Evenings were typically worst for me because I would try to suppress as much as I could in school,” Blake said. “Then when I got home they would all come out.”
While Blake and his mom seem to have developed a pretty good sense of humor about Blake’s condition, they both acknowledge that it hasn’t always been so easy to laugh about it.
“We’ve had periods that were like nightmares,” Catherine said. “There were times when he couldn’t get out of bed because his legs were twitching so much. It could be totally debilitating.”
For awhile, Blake also experienced hallucinations — what he describes as little brown men — which both Blake and his mom believe may have been caused by the number of different medications he was taking for his disorders.
“He would wake me up in the middle of the night and be huddled in the corner of his room scared to death. It was just horrible. I would have to go up and sleep with him.
“Sometimes it’s hard to be with Blake,” she continued. “As the parent of a child with Tourette’s, it’s difficult to figure out when they’re just testing your limits, or when it’s the disorder. When the verbal tics started, he used to call me a fat ass bitch all the time. So it’s a fine line — is the Tourette’s causing him to do it, or should you turn around and slap him?”
“How about it, Blake,” I ask him. “Is there any of that going on?”
“A little bit,” he says, with a sheepish grin.
Why Do You Act Like That?
Most of us perceive people with TS as someone who flails about violently and shouts obscenities. This image has been created largely by talk shows, which usually feature only the most extreme cases. Many doctors even posit that the young people who appear on these shows — perhaps a little enamored by the spotlight and cameras — may be trying to “one-up” their fellow talk-show panelists. However, TS is a disorder whose more severe symptoms can be quite bizarre and hard to ignore. This may explain why in the Middle Ages, people with Tourette’s were often thought to be possessed by demons. Some medical historians believe that some of the women hanged in Colonial Salem may have been afflicted with Tourette’s. It wasn’t until 1825 that the first case of TS was reported in medical literature with a description of the Marquise de Damdispierre, a noblewoman whose symptoms included numerous physical tics and various vocalizations. Later Dr. Georges Gilles de la Tourette, the French neurologist for whom the disorder is named, described several cases in 1885.
For many decades it was theorized that TS was caused by everything from mental illness to bad parenting. Today, while the basic cause of TS is still unknown, current research suggests that there is an abnormality in the gene(s) affecting the brain’s metabolism of neurotransmitters such as dopamine and serotonin. Neurotransmitters are chemicals in the brain that carry signals from one nerve cell to another.
A diagnosis of TS is often made after a process of elimination — usually via blood tests and brain scans that rule out other possible disorders — and after observing the symptoms and evaluating family history.
“Typically TS begins to manifest itself in the face and head, with lots of eye blinking and throat clearing,” said Dr. Donna Dillon-Stout, a clinical psychologist who specializes in pediatrics. “As the disorder progresses, it might move into the shoulders, arms, trunk and legs. So the more severe the disorder, the farther down the body it moves. If an adolescent is only having symptoms involving the face, such as humming, throat clearing or sniffing, that’s probably as bad as it’s going to get. It’s that four-year-old who has complex motor tics involving more than the face that you know is suffering from a budding severe case.”
Tics are classified as simple or complex. Simple tics are sudden, brief movements that involve a limited number of muscle groups, such as eye blinking or shoulder shrugging. Complex tics are distinct, coordinated patters of successive movements or behavior such as jumping, smelling, touching other people, coprolalia (involuntarily shouting obscenities), or echolalia (repeating the words of others). While symptoms like coprolalia and echolalia are often focused upon, only a small percentage of people with TS exhibit that type of behavior.
A patient has to exhibit both motor and vocal tics for at least six months to be officially diagnosed with TS. Because the behavioral symptoms and tics are easily misinterpreted and misunderstood, though, this can often be a tricky and delayed process.
“Many pediatricians or family practice physicians might suspect TS but are afraid to make the diagnosis because it’s not a condition where you can order a lab test,” said Dr. Tess Nelson, who practices at the Carolina Neurological Clinic. “It’s not like figuring out if a child has diabetes. Knowing the disorder can have life-long consequences, general practitioners will usually refer the patient to a specialist.”
What makes TS all the more difficult is that the symptoms typically show up at an age when a child is just entering school and learning how to socialize and interact with others. Sandra Morrison first noticed the symptoms in her daughter, Carly, when she was four.
“She was making continual noises like clearing her throat,” Sandra said. “But it wasn’t until she was seven that she was diagnosed. For a long time she didn’t tic in front of anybody but family. She could control it in front of the doctors, but as soon as we stepped outside she would let it out.”
Sandra said that while her daughter has done a tremendous job in dealing with her disorder, it’s other people’s attitudes and behavior that can sometimes make it difficult.
“Everything that hurts her hurts me,” she said. “We can be out having a great time, but then somebody says something rude and it just ruins the whole day.”
Sandra recounts a recent incident when the family was at a bookstore, and another child approached Carly’s little brother, Dylan, and asked him if his sister was a freak or something.
“I waited for the other boy’s mother to handle it, but she just looked away,” Sandra said. “I’ve had adults come up and ask me why Carly acts like that right in front of her, like she wasn’t even there. It’s shocking how rude people can be.”
Carly, who loves to fish and camp and hopes to be an artist when she grows up, is now 10 and in the fifth grade. She admits that sometimes it’s a little tough when people stare or say mean things, but that it doesn’t really bother her anymore.
“I’m glad to be who I am,” she says.
Cynthia Thomas and her seven-year-old daughter, Marianna, can relate to what Carly and her mom are going through. Marianna first started showing symptoms of TS when she was two, including rapid eye blinking and shoulder licking.
“At first I just thought she had habits,” said Cynthia. “But things continued to progress.”
When Cynthia turned five, the vocal tics started, and then a woman whose own daughter had TS suggested to Cynthia that perhaps Marianna suffered from the disorder. “My initial reaction was ‘I don’t think so’; I was a little offended, honestly.
“I didn’t take her for evaluation right away because I was afraid they would suggest medication and I just wasn’t interested in that,” Cynthia continued. “But by the end of first grade I had become concerned enough to take her to the doctor, and she was officially diagnosed.”
Like Carly, Marianna has had to deal with rude and inconsiderate people. But Cynthia said the experience has made both of them stronger — and wiser.
“As a parent, the hardest part is that people who don’t know her might try to categorize her,” Cynthia said. “So at times people can certainly be hurtful, and I’ve felt anger. But once you learn about Tourette’s you realize it’s no big deal. I’m just fortunate I have this healthy, wonderful, bright little girl. That’s what’s really important.”
Living With Tourette’s
Individuals with TS can expect to live a normal life span. Although the disorder is usually life-long and chronic, it’s not a degenerative condition, and the symptoms often decrease as the patient matures. While there is no cure, organizations like the National Institute of Neurological Disorders and Stroke are working on it, and continue to fund research projects. Currently, investigators are conducting genetic studies in an effort to find the chromosomal location of the TS gene(s), which would be a major step toward understanding the genetic risk factors of TS. Investigators are also studying certain neurotransmitters to better understand what role they play in the disorder, and help formulate more effective therapies. Other research projects include studying the environment of children at high risk for TS, to determine if factors such as life stresses or certain medications may influence the expression of the disorder.
There are also medications available to help with symptoms. Unfortunately, there is no one medication that is helpful to all persons with TS, nor does any one medication completely eliminate symptoms. Also, most of the medications prescribed — typically anti-depressants — often have side effects such as fatigue, depression and insomnia.
Dillon-Stout says that one of the most effective methods for dealing with TS is simply learning to accept it and understand that it’s manageable.
“Many parents are just devastated when they hear that their kid has this disorder,” she said. “The child is often scared and feels that their body is out of control. So it’s important that both the patient and parent understand what TS is, to not feel guilty or ashamed, and to understand that what they know of TS is usually at the far end of the spectrum.”
Dillon-Stout added that how well a patient does later in life depends on how well they deal with the disorder’s secondary social and emotional challenges.
“The majority of people with TS are very intelligent and driven,” she said. “They have everything it takes to be successful, but because of their obsessive side, they can be their own worst enemy. The majority of people I see with TS are oftentime perfectionists and want very much to please others. But they have this disorder and they don’t know how to rectify it, and they very much want to fit into society.”
Folks like Gary Fay, 33, and Sarah Overcash, 44, know about these kinds of struggles all too well, both having struggled with TS all their lives. Fay’s symptoms first showed up as minor tics when he was a child, but by the time he entered college they had become more noticeable.
“It started with facial grimacing and my neck would twitch, but I didn’t think too much of it at the time,” Fay said.
Gary went on to graduate school in Texas, but because of the stress involved, his condition continued to worsen, and he eventually dropped out.
“People around me just kind of laughed and thought I was weird,” says Fay. “Lots of people just looked away. At first I tried to suppress it, but after a while I just said hey, this is me, take it or leave it.” Despite these setbacks, Fay says he hasn’t let TS beat him. Today, having earned multiple college degrees, he’s a successful software designer in Raleigh. Fay is also helping organize a NC Chapter of the Tourette Syndrome Association (TSA), a voluntary, nonprofit organization that serves people with TS, their families and friends. The Association funds research, provides services and support to patients and their families, and offers a variety of publications.
Overcash, who grew up in Charlotte, first started showing TS symptoms like throat clearing and self-abusive behavior like hair pulling when she was eight. But she wasn’t officially diagnosed until 20 years later.
“At the time not much was known about TS,” she said. “When I was young, my parents took me to a pediatrician, and he just said I’d outgrow it. But when I reached the 11th grade, everything just sort of exploded. My whole body started ticking. I went to a neurologist and he didn’t know what it was either. I was so frustrated and angry at that point, I just gave up.”
Overcash eventually moved to Montana where she attended nursing school; the stress there only caused her symptoms to get worse. As a last ditch effort, she went to the Mayo Clinic in Minnesota, hoping they could explain what was wrong with her.
“Within 20 minutes they diagnosed me with TS,” she said. “By then I already suspected that’s what it was, but it was still a big relief to finally be diagnosed.”
Overcash soon discovered, though, that just because her disorder had been identified didn’t mean her struggles would vanish. After graduating nursing school, she landed her first job in Charlotte at what was then Charlotte Memorial Hospital (now Carolinas Medical Center). After eight weeks she was asked to leave.
“They told me I was going to have to stop twitching or leave,” she said.
Overcash next landed a job at Presbyterian. This one lasted four weeks.
“They said I would just be better off working in a nursing home, but I knew it was because of my Tourette’s.”
Demoralized and frustrated, Overcash left the nursing field, moved several times, got engaged, and eventually moved to Montana where she earned a Bachelor of Science in Health and Physical Ed. But things still weren’t working out.
“My self-image was so distorted and, emotionally, I was a wreck,” she said. “Those first experiences in Charlotte really messed me up. It destroyed my confidence.”
All this time, Overcash had also been wrestling with a drinking problem, a symptom of her compulsive personality, which is typical of many TS patients. She finally checked herself into an alcohol treatment center in Minnesota.
“That really turned my life around,” Overcash said. “It helped me get a better feel of who I really am; it helped me realize that I’m about more that just my Tourette’s.”
Although sober now for over a decade, Overcash still wrestles with demons, both personally and professionally.
“I thought because I was sober, things were going to magically improve, and things did get a little better, but I’ve still lost a few jobs. And I probably can’t blame all of that on Tourette’s.”
Overcash moved back to Charlotte four years ago, and is currently involved in organizing a NC Chapter of TSA, as well as organizing a local support group.
If interested, you may contact Overcash at (704) 341-1084. If you would like more information about TSA, they may be contacted at (718) 224-2999 or on the web at: www.tsa-usa.org.
This article appears in Oct 13-19, 2001.
