How to live with Tourette syndrome at 60: 'That man has tics'

That man with tics is me. I'm 60 years old, and at 52, I was diagnosed with a rare case of Tourette's Syndrome, a chronic neuropsychiatric disorder that affects 1% of children and adolescents, but which dramatically decreases by adolescence, to just 0.01% of adults with diagnosable tics.

This means that, of every million people over the age of nineteen, only 118 retain the tics characteristic of the syndrome. Reaching old age with Tourette's is a rarity. Each tic is an incomprehensible, involuntary, and most often liberating inner explosion.

An example of someone who lives with this disorder is Camilo Sánchez, the well-known comedian from F*ck News, who lives with his Tourette's and made his tics a "partner" in his success, because Tourette's is not just a condition of motor or vocal tics, it is a different—and very intense—way of inhabiting reality. It affects movement, but also thought, attention, emotions and, especially, the way of creating, imagining and associating.

Special recognition to Camilo for revealing Tourette's and for bringing a little more insight to Colombia. He dared to expose himself with his tics and showed all his ingenuity, but I feel that what has been made visible is incomplete. The difficult, embarrassing, vital, and complex aspects of Tourette's syndrome are yet to be revealed.

In May 1885, the French neurologist Georges Gilles de la Tourette published in the Archives de Neurologie his “Study on a Nervous Condition Characterized by Motor Incoordination Accompanied by Echolalia and Coprolalia,” in which he described nine cases of involuntary movements (motor tics) and forced vocalizations (phonic tics).

Among the latter, he highlighted echolalia, or compulsive repetition of words or phrases that the person has just heard, and coprolalia, the involuntary utterance of obscene or socially unacceptable words.

The information available for Colombia is based on extrapolations from epidemiological studies in the United States and Europe, where the childhood prevalence of Tourette's syndrome ranges from 0.4% to 3.8%. In Colombia, these percentages represent between 60,000 and 570,000 children and adolescents (5–18 years old) with Tourette syndrome—approximately 150,000 on average—and between 3,500 and 17,500 adults over 18 years of age who continue to present tics. The disorder affects three to four boys for every girl, and the first tics usually appear at age 7. They reach their peak intensity between ages 10 and 12, and are diagnosed on average at age 13.

In addition, psychiatric comorbidities are common—anxiety (72.7%), depression (50%), ADHD (40.9%), and OCD (27.3%)—and have a significant impact on quality of life.

The Colombian Neurology Association addresses Tourette syndrome on its website and speaks extensively about it. They are very active in conferences, forums, and specialized content updates on abnormal movements. Tourette syndrome care in neurology services in the country's major cities is framed within the Ministry of Health's child mental health and neurodevelopmental disorders policies, so it can be covered under the care pathways of health insurance companies (EPS) and health promotion entities.

Given this situation, it could be said that Tourette syndrome is being "treated" in Colombia, but the limited information on the reality of the syndrome prevents us from gauging the needs and types of additional interdisciplinary intervention that Tourette patients require at any stage of life.

I didn't experience the typical Tourette's tics in childhood. I first experienced them eight years ago, and every time a crisis hits, something new appears in my tic repertoire. In that chaos, controlled by screams and spasms, I thought again about what a child experiencing their first tics might feel. It must be very disturbing, at least it was for me.

The social embarrassment of involuntary tics in public spaces begins to have a very strong emotional impact on children, who are often the target of teasing at school and inevitably the focus of attention when they desperately need to shake, scream, wave their hands, repeat words, hit, or swear more intensely. Not knowing why their body feels strange, their mind thinks differently, intrusive thoughts exhaust them, and they need to release their tics so they don't explode.

Oliver Sacks (1933–2015) was a British neurologist who combined clinical practice with a literary approach to his patients. After training in medicine at Oxford, he settled in the United States and worked at the Epilepsy and Neurology Center in New York. In 1995, he published An Anthropologist on Mars, a collection of essays on very specific neurological cases. In “Tourette Syndrome in the Surgeon's Office,” he tells the story of “Dr. Howard,” a surgeon with Tourette's whose tics disappeared while he operated. This wasn't the elimination of the disorder, but rather its transformation into a precise, almost artistic act. It was Tourette's in perfect repose. Sacks went so far as to suggest that, in some cases, Tourette's acts as an “engine of invention,” forcing the individual to find solutions—consciously or not—to channel their tics.

This process can lead to original expressions, a unique style in writing, painting, playing an instrument, or communicating with others. This revealing vision of Tourette's presented by Sacks, combined with Tourette Buddies, an incredible Canadian initiative that offers children and young people the support of an adult with Tourette's at least once a month, is one of many formulas for addressing some treatment of the syndrome. Tourette Buddies has helped reduce levels of social anxiety among adolescents and decrease school dropout rates due to bullying and isolation.

That's a powerful idea, a real bridge: a sponsor who greets you with a twitch, or two, or more, and says, "I know your pain." In that vital, intergenerational, magical encounter born only of love, the wall of shame is torn down.

Parents of children with Tourette's: you are parents of genius children; don't stop their tics, don't even think about it, let them scream, shake, roll, run, spin on their own axis. Tourette's repertoire is endless. I don't know—nor do I care—if neurologists and psychologists disagree, but releasing my tics without reservation or shame comforts me.

In honor of World Tourette Syndrome Awareness Day, celebrated this past June 7th, I'm opening a channel of communication with a question: Where are the adults with Tourette's? Where are those of us who haven't been "cured"? Those of us who continue to make strange noises and gestures in line at the bank, at the restaurant, at the office, at home. According to the Ministry of Health, rare diseases are those with a prevalence of less than 1 in every 5,000 inhabitants, and it's estimated that Tourette's in adults occurs in 1 in every 10,000 inhabitants over the age of 19. So, at most, there are 18,000 adults with Tourette's in Colombia.

I have little faith in humanity (it's gotten another tic), but I'm sure someone will reach out and want to talk about the "visitor who lives within us." Let's talk, and if anyone follows my lead, let's find parents of children with Tourette's and offer some of our time so they see us as grown men and women with tics. We can interact with them, accompany them to important school and family events, so they feel protected, and see that it's possible to "be grown" with Tourette's.

I want to make it clear that the goal is not to establish anything or appropriate the banners of any cause. In Colombia, we struggle to reach out to others, but this time I believe in the possible bonds forged through shared differences.

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