I can’t tell you how many times well meaning people have asked me, “Tourette’s, isn’t that where you like, curse all the time and flip people off?”
Not quite. So exactly what is it?
According to the Tourette Syndrome Association, Tourette’s Syndrome (TS) is, “a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year.” Basically, this means that in individuals with Tourette’s, part of the brain doesn’t function the way it does in other people. The National Institutes of Health (NIBS) reports that the specific part of the brain affected by TS is the Basil Ganglia, the part that controls voluntary motor movements. Basically, the connections that should be made in the Basal Ganglia are out of balance. Gilles de la Tourette is credited for first identifying and describing the disorder in 1885 after working with a series of patients who were experiencing similar symptoms (National Library of Medicine).
So what does that mean in plain English?
When I was six, I started developing some strange habits. My first behavior was my rapid and continual blinking. I blinked constantly. Thinking I needed glasses, my mom took me to the optometrist. Although I did need glasses, the blinking didn’t stop once I got them. I also started clearing my throat constantly. Again, my parents responded by having me checked for allergies. The allergy medicine didn’t work, however, and my throat clearing continued, along with my blinking. It seemed that once we got rid of one behavior, another one or two would take its place. I went through blinking, throat clearing, scrunching up my face, squinting, and more. The barrage just didn’t stop.
While my parents tried to figure it out, I felt afraid and felt isolated. It felt like I’d lost control of my body overnight. Whenever someone told me to stop blinking or clearing my throat or whatever I was doing, I would really try, but I just couldn’t. I quickly became frustrated because I expected more out of myself than making annoying noises like my little brothers. And yet, it just seemed like a part of me. I didn’t know how to separate it from myself.
The strange behaviors I was experiencing are called tics. Tics, as defined by the Center of Disease Control (CDC), are, “sudden twitches, movements, or sounds that people do repeatedly.” The CDC uses a good example when it compares tics to hiccups. “Even though you might not want to hiccup, your body does it anyway.” I would try to suppress the tics. I would concentrate on holding my eyes open and not giving in to the tics. Unfortunately, the longer I made my body wait to tic, the more I would have to tic in the end. Another factor that would worsen the tics was anxiety. I would often tic when I was anxious. When people would notice, it would make me self-conscious, which would perpetuate my tics even more. It was a vicious cycle.
There are two different kinds of tics. Tourette Syndrome “Plus” says tics are categorized as simple and complex. Simple tics are caused by using, “one muscle group or one simple sound,” while complex tics are, “a coordinated movement produced by a number of muscle groups (complex motor tic) or a linguistically meaningful utterance or phrase (complex vocal tic).” Some of my simple tics were blinking and clearing my throat; my complex tics involved more complicated movements like snapping my fingers repeatedly or saying a word over and over again.
Fact of Interest: Coprolalia is the term for the tic where people swear constantly. Although it’s been made famous through TV shows like “South Park,” the National Institutes of Health report it’s uncommon, even for people with TS. When it does happen, however, it’s not meant in any way to be rude or insulting. Believe me, that person struggles more with it than anyone else around them.
My parents finally took me to see a child psychologist upon my pediatrician’s recommendation. I was scared when he asked to see me alone for a few minutes in his office. I felt like I had done something wrong. I knew he was a brain doctor, and I didn’t want him to think I was crazy. To my relief, he was very kind, and he treated me like I was a normal kid. After just a few minutes of talking with me, he asked my mother to come in. He diagnosed me with what ended up being a Chronic (meaning it was lasting more than a year) Tic Disorder and Obsessive Compulsive Disorder tendencies. He said he could probably examine me further and get a diagnosis of Tourette Syndrome if it would help me in school, but as I was homeschooled and my mom was my teacher, she didn’t think it was necessary. She would make whatever adjustments I needed at home.
Tic Disorder v. Tourette Syndrome
A Tic Disorder and Tourette Syndrome are actually the same disorder; they’re just at different levels of severity. You see, there’s something called the Tourette Spectrum. Like Austism, OCD, ADHD, ADD and other neurological disorders, people’s personal diagnoses will differ. A tic disorder is on the milder end of the spectrum while Tourette Syndrome is on the more severe end of the spectrum.
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My tic disorder stayed about the same for a few years, and then began to get slightly better. While I was in college, however, my tics and anxiety grew much worse than they’d ever been. When I began to research it, I realized that my tic disorder was in the small percentage of individuals whose symptoms grow worse with age instead of better. (The American Family Physician says that 85% of children diagnosed with Tic Disorders experience fewer symptoms as they enter adulthood. I was in the 15% that stays the same or gets worse.)
The requirements for having Tourette Syndrome are at least two motor tics and one vocal tic lasting more than a year (National Library of Medicine). Though I might have qualified for Tourette’s when I was younger, I definitely did by the time I got into college, and my increased anxiety from school just made it worse. At first, I was crushed. I didn’t have to have Tic Disorders. The last thing I wanted was to have full Tourette’s. But with time and the grace of God, I’ve learned more and more that while my tics make certain areas of life more challenging, I can still lead a productive, happy life.
Adjustments and Coping Skills – What are some of the symptoms of TS I deal with daily? And how do I cope?
- High levels of energy – My husband thinks it’s quite funny that I can cruise on through days with four hours of sleep if I’m really focused on a goal. He’s quite understanding on days where I just need to “escape” the house. (Note: The cause of the high energy associated with TS is different from the cause of hyperactivity in ADHD.)
- Tics – The tics themselves can be distracting. It’s hard to sit still when my body is moving a million miles an hour in different directions.
- Anxiety – Along with my OCD tendencies (Obsessive Compulsive Disorder is considered an anxiety disorder), my tics often make me self-conscious, which can add stress to my day.
Prayer and Quiet Time with God – My greatest defense against anxiety, a bombardment of tics, and panic attacks is talking to God. I’ve had too many panic attacks to count, but never have I cried out for God’s peace and not been granted it. Reading God’s Word constistently keeps His presence and love in my mind as well as I move through my day.
Healthy Diet – While a diet won’t “fix” a true neurological disorder, a healthy one can sure help reduce the symptoms. Expert Richard Sogn, MD, told WebMD that food that’s good for the brain is good for any neurological disorder. It makes sense. If I’m feeding my brain junk, it’s not going to perform as well.
Regular Exercise – Not only does the exercise help with focusing the extra energy and requiring my hands to do something besides tic, but I’ve found that with regular exercise, my need to tic is lessesened, and panic attacks are less likely.
Keeping my hands busy – I make sure I have something to do with my hands at all times, whether it’s fingering an object, making notes in a little notebook I carry, or typing things up on my iPad Mini. If my hands are preoccupied, they’ve got fewer chances to tic.
Do you have any questions, comments, or suggestions? I’d love to hear what you think, so leave your thoughts in the Comment Box! If you’d like more information on neurological disorders, education, and encouragement, sign up for my weekly newsletter. As always, thanks for reading!