Individuals with Tourette’s find success, identity, happiness despite daily challenges
At first glance, the East Bay support group for people with Tourette’s looked like any other friend group meeting for pizza on a Saturday afternoon. At Bambino’s Pizza in Concord last month, adolescents and adults mingled and discussed an array of topics, from the Jaws franchise to the video game “Five Nights At Freddy’s” to college courses. A few newcomers introduced themselves to the crowd of about 15 or so — all of whom were either individuals with Tourette Syndrome or family members. The ambiance was casual, friendly and, most importantly, empathetic. No one stared at another person’s involuntary actions — whether they were minor facial grimaces, verbal outbursts or something in between. Support groups like the one in East Bay provide a vital level of hospitality for those confronting Tourette’s, as doctors continue to search for answers about the disorder.
Tourette Syndrome (TS) is relatively common — affecting an estimated one in 160 children in the U.S. — but how the disorder manifests itself varies immensely throughout the population. TS is a neurological disorder characterized by repeated compulsory movements and vocalizations called tics. The impulse to tic is comparable to impulsive actions, yet people with TS still maintain complete authority over their actions, resulting in a syndrome that muddies the line between the voluntary and involuntary.
All individuals with Tourette’s experience at least two motor tics — from simple ones like excessively bobbing the head, blinking the eyes and tensing body parts, to more complex ones that require the orchestration of several muscles. Complex tics might evoke a sequence of simple tics or even entail more dramatic movements like twirling or hopping. In the rarest and most severe cases, tics can be completely debilitating.
TS is also characterized by the presence of at least one vocal tic — the aspect for which the disorder is most recognized — such as coughing, clicking the tongue and repeating the last word of a sentence like an echo. While Hollywood tends to depict people with Tourette’s as endless spewers of F-bombs, racial slurs and other obscenities — a symptom called coprolalia — only about 10 percent of individuals with the disorder actually express socially unacceptable verbal tics.
Former San Francisco support group leader Marcus de Cunha’s moderate childhood tics of head nods and eye rolls gradually became more drastic or evolved into entirely new tics. One of his current vocal tics constitutes a persistent gulping that sometimes leaves his throat so raw that he’s incapable of swallowing saliva (“Very good for diets,” he joked).
Although de Cunha has recently stepped back from his position as a co-vice chairman at the Tourette Association of America to focus more intently on his own condition, he still helps others overcome what he sees as the three main challenges for all people with Tourette’s: distraction, discomfort and embarrassment.
Distraction, the first obstacle, impacts everyone to varying degrees, depending on the severity of their tics. Jaleesa Jenkins, 19, of Union City, attended the East Bay support group. She talked about how, when she was suddenly afflicted by obtrusive tics at the age of 18, she had difficulty performing even the most basic functions. Jenkins’s tics were mild enough as a child to remain inconspicuous, but now her verbal tics range from interjecting words like “cat” or “fidget” into her dialogue every few seconds, to infrequently muttering swear words.
“There’s been times when I’ve had trouble eating, either actually getting food to my mouth because my hands would be moving everywhere — fidget — or [because I’d be] having so many uncontrollable vocal tics,” she said.
De Cunha recalled another woman — a student from MIT who moved to San Francisco in the summer to work for Google — whose TS hindered her education and employment during a period of heightened stress. Despite her intelligence, de Cunha says she eventually lost her internship with Google and was kicked out of MIT for being too disruptive during lecture. To return to her normal life, she took a few vacation months to clear her head — and now she’s back at college completing her degree.
Although schools grant accommodations to people with Tourette’s, instructors should also direct students toward resources — like counseling and therapy — that can help combat the added mental anxieties of the classroom. The best route for universities is to cooperate with individuals during their studies so that young adults don’t miss out on acquiring an education.
De Cunha asserted that the second major obstacle is the discomfort and sometimes serious pain that tics can inflict on bodies. “There’s a young lady in San Francisco who — it’s almost like seizures,” said Steven Wharton, the Sacramento support group facilitator also present in Concord. “She’ll be walking down the street and fall down. She breaks arms and legs and wrists all the time.”
The third challenge is the overall embarrassment of acting differently. De Cunha knows individuals with mild and severe TS who are too humiliated by their tics to step out in public. The fear of attracting ridicule or attention to themselves constrains them from making friends, enjoying hobbies and pursuing romantic relationships — spawning a vicious cycle of increased anxiety that further exacerbates tics.
Communities can help people with Tourette’s surmount these challenges by simply expressing support and understanding without drawing constant attention to their tics. The American Tourette Association also importantly advocates for less uptight work environments to counter the stressful environments that worsen tics — an important step in ensuring that employees with TS feel comfortable and productive in their jobs. And it’s vital for the general public to show empathy for those who feel like they negatively stand out in society.
“Nobody likes to be acting like a freak in front of other people,” de Cunha said. “Nobody.”
While the medical community is successfully conducting research on Tourette Syndrome, the potential cure, exact origin and comprehensive details of the disorder remain murky. Dr. Murat Pakyurek, a child, adolescent and adult psychiatrist at the UC Davis MIND Institute, has been studying Tourette Syndrome for about 10 years, along with many of its coexistent conditions.
Approximately 90 percent of patients with TS experience at least one other chronic disorder, according to a 2010 study. While Attention-Deficit/Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD) are the two most common co-occurring conditions, other comorbidities include anxiety, learning disabilities and mood, sleeping and behavioral disorders.
“[The] most important part [of the brain] that we feel is related to Tourette’s is basal ganglia […] which seems to play a role in body movements,” said Dr. Pakyurek. He added that TS tends to be a genetic disorder.
The natural progression of TS unfolds differently for everyone, with symptoms often tapering off during the transition from adolescence to adulthood. But for those whose tics don’t subside, medication and behavioral therapy can assist in curbing their repercussions. One promising option is Comprehensive Behavioral Intervention for Tics (CBIT), currently the only non-pharmaceutical treatment for TS and other tic disorders, said Rachel Pechter, a psychiatric occupational therapist who offers the treatment in San Francisco.
CBIT is typically a 10-week program that focuses on identifying environmental determinants that aggravate tics, and provides patients with stress management techniques to curtail their urges. Most importantly, CBIT utilizes Habit Reversal Therapy (HRT) to minimize a patient’s inclination to tic almost as effectively as medication, without the additional side-effects.
HRT first aims to increase patients’ awareness of oncoming compulsions to tic. Patients then engage in a competing response, a preventative exercise that initially deepens the yearning to tic, but ultimately diminishes its need and frequency over time and with more practice. Rather than relying on medication that merely suppresses symptoms, CBIT allows patients to utilize their own methods to tackle their tics head-on. Unfortunately, many doctors immediately rely on prescriptions, sending away their patients without the proper tools to confront the external factors of ticcing.
Just over a year ago, Jenkins was struggling with her diagnosis and was not receiving the answers she needed. She was forced to travel to Stanford for an official diagnosis because her first few doctors either dismissed her condition as a reaction to emotional stress or simply accused her of faking it.
“At the time, I was having full-body tic attacks, and I actually fell off the doctor’s table and hit my head,” Jenkins said. “And he just continued to talk to my parents and told them, ‘This is a cry for help!’”
Even though medical practitioners have acquired more training and knowledge about Tourette’s over the past several decades, the Tourette Association still has a long way to go in terms of educating doctors on the most effective ways to handle TS.
De Cunha maintains that TS is a defining, but not limiting, characteristic in a person’s life. “The first [step] is to accept Tourette Syndrome as an imperfection, and to remember that all of us, if we dig deep enough […] have a little imperfection — some more obvious, some less obvious,” de Cunha said. “But we all have something.”
One of the most important steps in fostering Tourette awareness is recognizing that the syndrome is a spectrum. The majority of people with TS experience very temperate tics that barely interfere with their lives, if at all. The American Tourette Association is working to destigmatize the syndrome so that communities realize that individuals with TS want to achieve their life goals just like everybody else. In addition to conducting scientific and medical research, the Association is striving to educate schools, employers, doctors, politicians and the general public about what Tourette’s is and isn’t.
Perhaps most importantly, individuals like Jenkins and de Cunha are actively defying and transforming any lingering public misconceptions. Despite the challenges her tics pose to her daily life, Jenkins remains optimistic and retains a sense of humor about some of her most amusing vocal tics — softly chuckling to herself when she spontaneously but assuredly ticced, “Make a franchise for your lemon tree.”
Although Jenkins is still figuring out the specifics of her future — she also has Fibromyalgia and chronic fatigue syndrome that present their own hardships — she ultimately wants to pursue music, especially since her tics cease altogether when she sings. Until then, she’s using her Youtube channel to vlog and educate others about her conditions.
“I think the main thing is to be open about it,” Jenkins said. “I definitely do let people have a period when they first get to meet me [to] just be able to ask anything — a long conversation or a short conversation or whatever they want — fidget. Because I want people to understand.”
Adults also play a vital role in the future of TS acceptance — especially among young adults with Tourette’s. By ensuring that support groups are as inclusive to adults as they are to children, the Association and older generations can showcase that tics don’t hinder success or happiness, and that a life with Tourette’s isn’t ill-fated. De Cunha knows engineers, cooks, politicians, stay-at-home mothers, surgeons and even a retired Formula One mechanic — all of whom have Tourette Syndrome. And de Cunha stressed that he himself has a job, a wife, friends, hobbies — everything he would want even without TS.
“The things I do, I do them with Tourette Syndrome, and so can you,” de Cunha said. “You have one shot at life. Once your number’s called, your number’s called, and that’s that. Don’t let Tourette be the thing that limited you.”
Written by: Taryn DeOilers — email@example.com