Jason's Journey With Tourette Syndrome
It’s not commonly known that movement disorders (such as Tourette Syndrome) and chronic pain can go hand in hand.
A huge thank you to Jason at aintnoshameinchronicpain.com for sharing his story. Please go check out his page and his support group!
At about the age of 10 or earlier I started having unusual movements and made weird sounds for what seemed to be no reason at all. This was a struggle as a child because it made me an easy target for bullies and others. When I was 12, my chiropractor suggested to my mom that I be seen by a neurologist for a possible Tourette Syndrome diagnosis. Tourette’s?!? I couldn't even say the word let alone know what it was. And back in the 1980s, we didn't have Google to assist us find information. The most I knew of it was what I had seen from Hollywood, Oprah, and the like. I didn't curse or say bad things so how could I have Tourette’s?!
Turns out that Hollywood put a spin on the diagnosis and term that was mostly not true. Tics are involuntary movements or vocalizations that are repetitive. Most people who are diagnosed with Tourettes do not curse, say words, or anything like portrayed in movies, tv or other forms of entertainment. I have a neck movement, shrug my shoulders, clear my throat, hum while I eat, eye movements, grind my teeth, and many more. They come and go or I as i was taught wax and wane. Stress, being tired, sugar, and many other things can trigger or aler my tics. Certain medicines have also made my tics worse instead of better.
What are tics? Here is more info on two types Tics that I found from the Tourette Association of America webpage (http://www.tourette.org/).
Motor tics are movements. Simple motor tics include but are not limited to: eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching, and arm jerking. Complex motor tics involve multiple muscle groups or combinations of movements and tend to be slower and more purposeful in appearance (i.e. hopping, twirling, jumping).
Vocal (phonic) tics produce a sound. Simple vocal tics include but are not limited to sniffing, throat clearing, grunting, hooting, and shouting. Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.
Tourette Syndrome and other Tic Disorders are not rare. The current estimates are that 1 out of every 160 children between the ages of 5-17 in the United States has TS and that 1 out of every 100 children has TS or another Tic Disorder. Tourette Syndrome also has many comorbid diagnoses as well (Attention Deficit Hyperactive Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Neurologic complication, Migraines, and Aspergers are just a few of these possible comorbid diagnoses). Chances are someone in your life is diagnosed with Tourette’s and you’re not even aware.
Now back to my journey. As a child I had my hair cut done like a skater with long hair so when I made my neck jerk I looked like I was getting my hair out of my face. In school I had arrangements that if I needed to step out of the room I just needed to make a signal and do so. This kept me from disturbing the class and also bringing attention to myself. Tourette’s is hard on a child in school as it is usually coupled with learning problems, memory issues, concentration difficulties, plus the stigma of being weird or abnormal. Thankfully my Mom was a huge support for me and my troubles. Every year she put something together for my teachers to help educate them on me and my Tourette’s. She also spoke with the school nurses, counselors, and staff to ensure they understood. This made things a little easier for me when it came to school. What she couldn't do was stop the bullying, teasing, mocking, and other stuff that was happening.
This torture coupled with life in general made my anxiety and depression start playing a big part in my tics.
My father on the other hand always insisted I just needed to stop doing it. Stopping involuntary movements is not as easy as it sounds. Trying to stop Tics is very painful and debilitating. It also takes a huge amount of energy to harness the power to control your muscles and nerves from their involuntary motions. Then when I am alone or resting guess what, my tics are on overdrive. It is hard to sleep, eat, drink, watch TB, focus, read a book or do just about anything when my Tourette’s is active or flaring. Couple this with my other diagnoses and it makes living each day a challenge.
I went to numerous doctors, neurologists, movement disorder specialists, psychiatrists and others to help me understand, treat, and monitor my Tourette Syndrome. Medication for Tourette Syndrome helped me when I was younger but had a price of some pretty bad side effects. In my early 20s I decided to forgo medication and try to control my Tourette’s. I was rather successful in doing so but again there were consequences for doing so.
Over the years my tics seemed to have gone away except at real bad or stressful times in my life. I was no longer dealing with my tics every minute or every hour of every day. I had a good 15 plus years where my Tourette’s was almost gone from existence. Then one day I was on a medication for another diagnosis. This medication somehow exasperated my condition and sent it into overdrive. I was hoping it was just a short term situation but now several months have gone by and I have only slightly slowed down.
Why am I sharing this? Well it’s time to open up and for me to discuss this with others. I want to break the barriers, get rid of the myths, share the truths, and help raise awareness for those of us who suffer. I want my own child and other children diagnosed to be able to attend school and live their lives without being afraid, being bullied, and to be understood.
Every diagnosis out there should be taken seriously. Every diagnosis out there also has more to it than the general public is aware of. So I urge you to take a few minutes and educate yourself on movements/tic disorders (not just Tourette Syndrome). Your compassion, understanding, and knowledge might make a difference for someone you know or someone you come across one day.
For more information please visit the Tourette Association of America: http://www.tourette.org/.