Living with Tourette Syndrome – Symptoms, Challenges & More

Professional Basketball Player Adam Kemp on the symptoms and challenges of living with tourette syndrome

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Tourette’s Syndrome, also known as Gilles de la Tourette Syndrome, has been a prevalent part of my life for the last 20+ years.  When I was ~6 years old I was diagnosed with Tourette’s, which I have suffered from consistent motor tics ever since.

Tourette syndrome was first diagnosed in 1885 by Dr. Georges Gilles de la Tourette and is currently suspected to affect about 1% of the overall population internationally (Robertson, 2008, pp. 461).  Although vocal tics are often the only form of Tourette’s people know about, there are multiple different representations of Tourette’s syndrome both in display and severity which can all be challenging to deal with given the situation.

However, that does not mean that those suffering from Tourette syndrome are incapable of performing in an educational environment.

As someone who has suffered from mild to severe Tourette’s for nearly their entire educational life and thereafter, I am confident that those who have Tourette’s can succeed given the proper environment.

If you are researching Tourette’s for yourself, your child, or someone close to you, I hope my research and personal experiences can provide you adequate support and knowledge about the challenges of educational learning for those with Tourette’s, and how it is possible for those with TS to learn as well as anyone else!

Keep reading below to learn more!

What is Tourette Syndrome and How is it Characterized?

As stated by the National Institute of Neurological Disorders and Stroke,

“Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.”

Forms of Tourette’s can range from mild involuntary contractions of muscles; to full-blown involuntary yelling of profanities or other words.  Personally, I suffer from mild to severe motor tics, which seem to alter themselves depending on the day, month or year.

Those who suffer from physical motor tics are often characterized with rapid eye blinking, distinct jerking or twisting of the head or neck, facial grimacing and shoulder shrugging. My distinct twitches generally occur in my neck or face, with dramatic eye blinking and restless legs being less consistent.

More dramatic examples of motor tics can be touching certain objects, jumping, restless leg twitching, or moving the entire body.  Severe forms can be far more debilitating.  In the worst cases, motor tics can become harmful to one’s self, with punching or scratching oneself becoming the involuntary action.

Vocal tics are generally what people are more aware of when thinking about Tourette Syndrome since those suffering from them have no way of hiding their disorder.  Mild forms of vocal tics can be as simple as “throat-clearing, sniffing/snorting, grunting, or barking,” while advanced vocal tics will involve words or specific phrases.

The most dramatic and disabling motor tics involve the use of profanities or inappropriate phrases.  Those who have ever encountered somebody who is suffering from severe vocal tics certainly will remember them, as there utterance of the word, sound or phrase is constant and entirely without regard.  Thankfully, the prevalence of those with this form of TS (Tourette syndrome) is only 10 to 15% of all people with TS (NINDS 2012).

How Common is Tourette Syndrome?

Tourette syndrome is generally noticeable in individuals by childhood, with an average early inception of 3 to 9 years old.  There is a significant gap in prevalence of TS in males and females, with males being impacted by the disorder between 3 and 4 times more often (NINDS 2012).

Such as with myself, most cases of TS become worst during the early teenage years.  Even though Tourette’s is often a chronic lifetime disorder, improvement in most mild cases begins to happen during late the teen period and early adulthood.  Also, TS may completely alter its representation in an individual.

Certain tics may come and go, which I experienced first-hand.  My earlier years with TS were characterized by uncontrollable eye twitching and twitching legs while attempting to sleep.  As years progressed the eye twitches subsided, becoming replaced by neck-jerking and jaw-stretching.

Furthermore, TS has been shown to affect individuals differently based on ethnicity.

“TS does seem to be substantially rarer in African-American people and has been reported only very rarely in sub-Saharan black African people” (Robertson, 2008, pp. 461).

The link between ethnicity and TS has not been proven or shown; therefore it is currently not possible to directly relate these findings.

The prevalence of individuals with TS in schools certainly varies due to region, as the disease itself is not “common.”  A 1998 study entitled The prevalence of Tourette syndrome in a mainstream school population estimated that for students aged 13 to 14, “299 per 10,000 pupils” were affected by TS (Traverse, 1998, pp. 847).

This is notable since this estimation shows a much higher prevalence of TS once proper questioning is utilized, potentially realizing that TS is more common than previously considered.

Even though it may be more common, it is also most likely very mild in these individuals since it had not been worthy of a diagnosis by a general health care observance.

What Causes Tourette Syndrome?

the neurological and genetic causes of tourette syndrome

According to Recent Advances in Tourette Syndrome Research,

“recent anatomical and neuroimaging studies have provided evidence for abnormal basal ganglia and dopaminergic function in TS” (Albin, 2006, pp. 175).

The “basal ganglia” are a group of nuclei residing in an individual’s brain; connected with the cerebral cortex, thalamus, and brainstem, and are strongly associated with the production of voluntary motor movements, routine and behavioral habits, eye movements and emotions (Stocco, 2010, pp. 541-574).  The exact cause of TS is currently unknown.

However the connection of the basal ganglia along with neurotransmitters such as dopamine, serotonin, and norepinephrine are strongly considered to be the cause (NINDS 2012).

According to The Prevalence and Epidemiology of Gilles de la Tourette Syndrome,

“TS was thought to be a rare and, according to some, a psychogenically mediated disorder” (Robertson, 2008, pp. 461).

Meaning, Tourette’s was not passed from generation to generation, yet developed in the sole individual.  However, recent studies have altered this theory. Twin and family studies have begun to suggest that tics are inherited, due to prevalence in previous generations.

It is noteworthy that other studies also suggest that tics are not based on a singular gene or gene sequence, developing due to an array of possibilities, including multiple genes and environmental factors (NINDS 2012).

For those who have had a family or personal history with the disorder it is important to understand that those in future generations may not succumb to full-blown tics.  Considering the exact relationship of genealogy and TS is not fully understood, TS may appear in a much different form.

This could range from far milder to much worse, depending on other conditions and impacts of the situation. In an additional study utilizing 35 special education and 35 regular classroom students from one school district, the genetic potential was also investigated.

“For three randomly selected students with definite tics, direct examinations of first-degree relatives revealed the presence of tics in all families” (Kurlan, 1994, pp. 699).

Although this is an extremely small sample size, the randomness of the testing certainly alludes to a connection between family history and future prevalence of TS.

How to Treat Tourette Syndrome

different options for treating tourette syndrome

Although a “cure” for TS has not been identified yet, various treatments have been developed and utilized to help subdue the tics.  According to The Gilles De La Tourette Syndrome: The Current Status,

“treatment should be ‘symptom targeted” (Robertson, 2008, pp. 461).

Cases of mild TS can often be treated through

“psycho-education and reassurance for the patient and the family” (Robertson, 2008, pp. 461).

Psycho-education involves attempting to ingrain an understanding of the illness to the individual affected so that they can better understand how to deal with what is going on.  More comprehensive psych-education approaches better utilize the patient’s strengths and abilities to reinforce control, encompassing a more long-term solution.

For those with more advanced symptoms, habit-reversal, self-modeling, and other Comprehensive Behavioral Intervention techniques have been proven to be more effective than most other psychological treatments.

One of the most utilized treatments, habit reversal training, is essentially the concept of replacing an urge to express a tic with a different response, one which is more comfortable to the individual.  The reason for this is that when experiencing tics, individuals often time will feel the involuntary urge within them, yet do not understand how to control it (Kelly).

This training aims to develop a sense of control for the individual, so their tics are not unleashed in a distracting manner, allowing them to better fit in social situations.

In one small-scale study entitled A School-Based Intervention Designed To Reduce the Frequency of Tics in Children with Tourette’s Syndrome, four school-age students underwent treatments involving habit reversal and self-modeling.  Out of the four students assessed, three of them

“showed substantial decreases in their tics, which were maintained during a 5- to 10-week follow up” (Clarke, 2001, p. 11).

Along with this, the fourth student showed mild decreases in tics.

From 2004 to 2007 a more extensive study was conducted, entitled Behavior Therapy for Children with Tourette Disorder: A Randomized Controlled Trial.  The study concluded that over 50 percent of the children who received the treatment significantly improved their ability to subdue tics, compared to less than 20 percent who improved due to a differing controlled treatment (Piacentini, 2010, pp. 1929).

If behavioral treatment alone is not successful, those with moderate to severe TS also may utilize various medicines.  Although not full-proof, research has indicated that clonidine and guanfacine can help suppress or lessen the prevalence of tics.  These medicines are used to treat high-blood pressure and ADHD.

Individuals with moderate to severe TS generally do not benefit significantly from the medicine alone, yet make much more significant strides by involving behavioral therapy as well.  For the most severe and disruptive TS sufferers, deep brain stimulation and botulinum toxin have been identified as tactics to subdue the tics (Robertson, 2008, pp. 461-472).

My Personal Tips for Managing Tourette Syndrome

Aside from these scientifically researched methods, I have my own anecdotal tips for treating Tourette’s.

For starters, I strongly suggest yoga and meditation. Yoga and meditation are two of the best forms of exercise for anyone, and they have many specific benefits for those with TS.

Along with that, I have had enormous success using CBD Oil to control my tics. Not all CBD Oil products are created equally, so you should check out my CBD Oil and Medical Marijuana category to read my review of various quality CBD products. Although the research is currently inconclusive, research indicates that cannabis and cannabinoids have a positive impact on TS.

Furthermore, I also consistently drink a variety of herbal teas which help with calming my tics. Tea such as lavender, chamomile, turmeric, and other non-caffeinated teas seem to help my body remain calm and help reduce my tics.

I have many other anecdotal tips as well, and you can feel free to contact me if you would like to hear more.

Additional Issues Faced by Those Tourette Syndrome

For those suffering from Tourette’s, various other psychological or physiological issues are often prevalent.  Generally, the tics are chronic throughout an individual’s life, yet they do not have a lasting impact on the individual’s life expectancy.

Individuals with Tourette’s do not have any known connection to shorter life spans, at this point.  Along with the development of tics, those suffering from Tourette’s are often accompanied by Attention Deficit Hypertension Disorder and Obsessive-Compulsive Disorder.

In the study Tourette’s Syndrome in a Special Education Population, 11 of the 70 students assessed were determined to have Tourette’s.  Out of these 11,

“about one-half of the subjects with tics have evidence of obsessive-compulsive behavior (OCB) or an attention-deficit hyperactivity disorder (ADHD) “(Kurlan, 1994, pp. 699).”

Furthermore, “depression, generalized anxiety, panic attacks, and mood swings” are prevalent in many with TS, causing the individual more issues throughout their life (NINDS 2012).

These issues are consistent with TS due to their connection with brain neurotransmitters and may be worsened due to social stigmas as well.

Continuing off of this, Tourette syndrome and non-ADHD learning disorders also show distinct links.  Based off of a 1996 study published in Neurology, children whose neuropsychological profile resulted in the finding that: solely having TS does not correlate with having non-ADHD learning disorders.  Out of 65 children with TS between the ages of 6 and 14, 23% demonstrated learning disabilities (Schuerholz, 1996, pp. 958).

For the experiment, children were grouped based off of their prevalence of ADHD.  Children who had TS but did not show any signs of ADHD did not result in having any other learning disorders as well (Schuerholz, 1996, pp. 958.)  Concluding, unless accompanied by ADHD, individuals with TS most likely do not have other learning disabilities and have a better chance of being implicated into the educational system.

Tourette Syndrome and the Educational Process

Teaching students with Tourette’s can come with incredible difficulty, depending on the severity and form of tics.  According to Attention Deficit Disorder and Neuropsychological Functioning in Children with Tourette’s Syndrome,

“ADD children did not differ from non-ADD children in age or in onset or duration of TS but did display more severe complex tics and obsessive-compulsive symptoms. After statistical control for these characteristics, ADD children demonstrated significant deficits in various elements of attention, including encoding, sustaining, and focusing/ executing, and in academic achievement. They did not differ in IQ, non-attentional cognitive skills, or sensorimotor functions” (Yeates, 1994, pp. 65).

The resulting influence of this is that it is not necessarily TS itself which has the most impact on educational ability, yet the severity of the TS along with the severity of other neurological diseases.

Another study, this time produced in the Journal of Pediatric Psychology, once again demonstrated that the impact of ADHD is more severe on education ability then TS alone.  According to the article,

“patients with a comorbid ADHD diagnosis evidenced poorer performance than those with TS alone with respect to severity of TS symptoms, psychosocial functioning, verbal and performance intelligence, and word fluency, but not on tests of cognitive flexibility” (Brand, 2002, pp. 203).

Students who suffer from mild to moderate motor tics will have the most natural time adapting to an educational setting, and might not even be diagnosed with TS.  For students in this category, their most significant difficulty most likely will be accompanying ADHD or OCD, along with social stresses and peer management.

If the motor tic is not severe in a student, full inclusion should be relatively easy for the student.  The tic will not be disturbing to the class or a cause for their own distraction, and they should easily have the ability to sit and learn in a classroom.  The difficulty of teaching students with motor tics begins with severe motor tics and all levels of vocal tics.

For students who have trouble controlling their tics, The Canadian Journal of Special Education produced an article stating that with students suffering from TS,

“a flexible teaching style, a warm and supportive classroom environment, paired and cooperative learning strategies, frequent breaks during instruction, and a safe place to release tics” helps facilitate the best overall experience of the TS student (Jones, 1993, p. 115).

Vocal Tics & The Educational Process

Individuals with all levels of vocal tics can be distracting or disturbing to those around them, making it difficult to allow them full inclusion.  However, it is not to say that these individuals do not have the processing brainpower to understand age-level material, yet that they are not fit to sit in a classroom setting.

For these individuals, there are alternative options which can help the individual succeed educationally.  Smaller or separate classes are often options since this still allows the child to remain in a school setting.

If the tic is far too severe, an entirely separate school setting is required, so that they cannot disturb the other children.  As with any individual who suffers from ADHD, ADD, OCD or other learning disabilities, specific needs of the student must be assessed.

The prevalence of these other disorders along with TS would have the most impact the individual’s ability to take tests and listen to lectures, as they are forced to remain calm for the most extended amount of time during these tasks.

How Can Those with Tourette’s Obtain a Proper Educational Experience?

A prevalent issue for those with severe enough Tourette’s to be diagnosed is the ability to obtain a strong education.  According to Tourrette Syndrome and Educational Problems in Canada, a survey of known TS patients resulted in 70% having received some form of education.  From this, these individuals noted that concentration, paying attention and performance on time-limited tasks were there biggest difficulties (Shady, 1988, pp. 263).

Furthermore, the survey noted that 66% of the individuals were happy with their educational experience, and the most common recommendation made to improve the education was “educating educators” (Shady, 1988, pp. 263).

Due to this, it is apparent that in individuals who are suffering from TS yet can still manage an educational setting consistent understanding of the disease and tactics to further their learning is the biggest setback to these individuals.  Such as those who are diagnosed with ADHD or ADD, individuals with TS must be made aware of in a school setting and can become educationally successful if they are.

Tourette Syndrome and Social Interactions

Another strong issue with those suffering from TS is their social and emotional well-being, namely peer interactions. I personally experienced many of these issues while growing up, and I am happy to answer any questions you have on this subject if you would like to contact me.

A study produced in The Journal of Child Psychology and Psychiatry observed that when compared with a control group,

“children with TS only were not significantly different from unaffected controls on most measures of externalizing behaviors and social adaptation but did exhibit more internalizing symptoms” (Carter, 2000, pp. 215).

This is most likely since the tics suffered by children can cause them to feel self-conscious or different than their peers, especially when faced with ridicule or bullying due to their abnormality.  Although it does not change the child’s ability to socially interact, they begin to internalize the perception that they are different or strange compared to others.

Furthermore, the study also noted that those with both ADHD and TS suffered from far more

“externalizing and internalizing behavior problems and poorer social adaptation” than children in the control or TS only group (Carter, 2000, pp. 215).

This shows that the additional ADHD has a much more significant impact on children with TS then TS alone.

Concluding Thoughts – The Future for Those Living with Tourette Syndrome

Currently,

“the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and nervous system” (NINDS 2012).

Genetic studies, neuroimaging, and clinical trials and experiments are all being conducted to help understand more about where Tourette syndrome originates in order to help prevent it.  Knowledge of TS has begun to grow, impacting the services and help available to those suffering from it.

Although the severe forms of Tourette’s may seem debilitating to those who see the disease from the outside, proven research has shown that it is extremely possible for individuals suffering from TS to succeed in educational environments and other areas of life.  In school settings, necessary adaptations may need to be made to correctly work-with these individuals, and a complete understanding of the syndrome will allow for maximum potential to be fulfilled.

Although I do not have the more-severe vocal tics, I also hope that my accomplishments (and the accomplishments of others with Tourette Syndrome) demonstrate the fact that people with TS truly can do anything they would like in life.

There are certainly times when living day-to-day is a struggle; I managed to achieve my dream of becoming a professional basketball player, even with Tourette Syndrome.

If you have any additional questions about living with Tourette Syndrome and how to handle any of the complex issues TS brings, please do not hesitate to contact me and ask!

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