At the end of February, a video of Lewis Capaldi went viral on Tik Tok, when he was unable to continue singing due to spasms that shook his face and part of his body. It happened in Germany and the public followed the song in one voice in support of the artist. It had more than 14 million views worldwide. The British musician posted on one of his networks: “My shoulder shakes when I’m excited, happy, nervous or stressed, sometimes it’s quite uncomfortable, but I guess that’s it”, and explained that he had Tourette Syndrome (TS).
It is a neurological condition characterized by the presence of partially involuntary motor and phonetic (sound) tics. Capaldi’s video returned to unexplored ground. NEWS spoke with professionals in neurology, psychology, associations, families and people with TS. Everyone agrees that there is a distorted view of the reality of the Tourette.
“Tics are a sudden, repetitive, non-rhythmic movement or vocalization. A unique aspect of tics, in relation to other movement disorders, is that they are suppressible, but, at one point, irresistible since they are experienced as an impulse that must eventually be expressed,” says Diego Bauso, deputy head of the Neurology and Head of the Abnormal Movements and Parkinson’s Section of the Italian Hospital of Buenos Aires.
The most common or simple tics can be: throat clearing and sniffing, moans, screams and other noises. Complex phonic tics include coprolalia (swearing), echolalia (repetition of words), and palilalia (repetition of a phrase or word with increasing speed).
Studies carried out in other countries report a global prevalence (number of people with this condition) of 0.5 percent. Some specialists consider Tourette’s as a rare or infrequent disease that manifests itself in different ways. The truth is that the people who insult or yell involuntarily are a tiny part of that 0.5%. However, the collective imagination associates TS only with the tic of bad words.
Fictions on TV, theater and cinema, represented the condition with biased information. “The idea from the media about Tourette’s is that of someone who insults and swears, and that’s a very small part,” says Andrea Bonzini, founder and president of the Argentine Association for Tourette Syndrome and mother of a person with ST.
“Culturally, this aspect tended to be perceived, but it is very rare, it occurs in 10% of people with Tourette’s,” explains Ignacio Rizzo, PhD in Psychology, Cognitive-Behavioral Therapist and author of the book “Tourette’s Syndrome” to NEWS. Help manual for parents, teachers and professionals.
IN FIRST PERSON.
Dr. Luis Lehmann, who yelled “Forro!” at a mass, and he did not want to go back to that church, he is one of the people that make up that group with coprolalia.
When asked about Tourette’s first telltale episode, he recalls a summer in Chile with his family when he was 6 years old. He was sitting in an armchair when he began to shake so much that he ended up sitting on the floor.
“I was very lucky,” he tells NOTICIAS, and explains that in primary school he was accompanied in the process by his peers. “We learned to laugh at my vocal tics and insults,” he recalls, “They waited for me to yell with the bad word on the first day of class, so that the teacher would scold me and then say, “But don’t you see what Tourette has?” He says. that in that childhood group a complicity was developed that lasts to this day.
Adolescence and sexual awakening had another complexity in bonds and relationships. “It was very difficult at this time to find someone sensitive, in my high school at least, the girls were looking for the athlete, and one was not exactly the model of a hormonal adolescent, so over time I took refuge in my friends and locked myself away” , assures.
Luis is a medical specialist in imaging diagnosis, and from his experience he collaborated several times with the Argentine Association for Tourette Syndrome with talks and workshops. He travels back in time when the symptoms were more serious, “It is to remind myself that the merit is not that I did all the way to become a doctor, but that I did all that, having Tourette”, he says.
In a workshop he learned about the case of a child with multiple tics who had dropped out of school, and no one retained him or tried to integrate him. “I don’t know where he will be now, I just know that as a system we rejected him from the beginning,” he explains.
The therapist Ignacio Rizzo explains that the most recurring fears in the social are how the TS condition will impact the relationship with peers, and above all the fear of teasing and exclusion. “As a product of misinformation, teachers often, without bad intentions, demand that boys and girls with Tourette’s stop moving or making sounds, especially when there are many tics. From then on, the boys begin to have a circle vicious where they tend to increasingly avoid these or other areas”, says Rizzo
“IT IS NOT EASY FOR THEM TO TELL YOU THAT YOUR DAUGHTER HAS NO CURE”.
Andrea Bonzini is a founding teacher and president of the Argentine Association for Tourette Syndrome (@touretteargentina). This Institution is sustained thanks to the empathy of professional collaborators and the love of the stories crossed by the Tourette.
Fifteen years old, she noticed that her daughter had strange movements, and made guttural sounds among other expressions. they told her that she was going to pass, she noticed that her movements were changing but they did not diminish.
A classmate at the school where she worked told her about Tourette Syndrome, and the answers she found on google matched her daughter’s symptoms. Andrea says that the process towards the diagnosis was long, there were visits to psychologists and other specialties, until a child neurology professional finally arrived with the answer: her daughter had Tourette Syndrome.
“We had to learn as parents to know and accept what Tourette’s was to help her sustain and learn to manage her tics and accompany her at all times so that she does not falter.”
A world opened up before the family and as a teacher Andrea verified everything that was unknown about that condition. One day her eldest son asked her if what she did for her sister could not be done for other boys. There was born the association that opened a path in Argentina, which is already 11 years old, and has 50,000 followers around the world.
PALLIATIVE TREATMENT.
“Medical intervention is indicated when TS symptoms interfere with social interactions, school or work performance, activities of daily living, or cause discomfort, pain, etc.”, says the neurologist, adding that patients who have mild, non-disabling tics should receive education, counseling and supportive care; in such cases, tic suppressive behavioral or pharmacological therapy is not clearly indicated.
“Regarding bothersome tics, the main goal of treatment is to reduce their frequency and intensity to improve function and quality of life. However, there is no cure for TS”, explains Bauso, who is also an associate professor of Medicine at the HIBA University Institute.
He concludes that it is ultimately the doctor who must assess the need for medical or behavioral treatment. The various drugs used for different aspects of this syndrome are widely available. “For the most refractory cases, some type of deep brain stimulation surgery is being experimented with, which is only performed in certain specialized centers and within strict research protocols,” Bauso clarifies.
“Today there are treatments that improve the quality of life of patients,” says Rizzo, and he refers not only to tics of marked intensity but to other conditions that the condition presents, such as marked levels of fear or anxiety, alterations in the mood or impulsivity, inattention, hyperactivity, night fears, sleep disturbances, learning problems. “What cognitive behavioral treatments provide, as well as psycho-pedagogical support, neuroscience in general, although they do not cure, they significantly improve the quality of life”, concludes Rizzo
EVERYTHING HAPPENS. “
The appearance of tics or any other abnormal movement in a child or adolescent, as well as certain behavioral disorders such as difficulty concentrating or signs of motor hyperactivity, should lead to a consultation with either a pediatrician or a neuropediatrician,” adds Bauso. .
The average age of onset is 6 years, and the disorder manifests at 11 years in 96% of patients. The severity of tics usually reaches a peak between the ages of 10 and 12, followed by an improvement in most during adolescence and adulthood. Society must learn to include, and accept.
