Tourette Syndrome–a personal look

This is the first of a series of posts about a syndrome (a group or pattern of symptoms) that most know little about, that is often misunderstood, and is occasionally part of some “jokes”. You can research anything on the internet, but I want to give you a personal look…

I remember the first article I read about Tourette Syndrome (TS). It was about 10 years ago and the title was something like, “Tourette Syndrome: A Hellish Nightmare”, and it proceeded to tell how people with TS suffered terribly both from the physical aspects of this neurological condition and from the ridicule they faced from others. It sounded horrible. It stated that it was usually diagnosed around age 7 and the symptoms increased tremendously until they became nearly unbearable during puberty. These children were usually removed from their schools and shunned as outcasts, requiring special school placements and as adults were often unable to hold a job.

I read this when my oldest son was 7 and I suspected he had been showing signs of TS. Prior to about 20 years ago, research on TS was extremely limited as reflected by that article. Fortunately much has now been done. Two great sites for information are Tourette Syndrome Plus and the Tourette Syndrome Association.

For our family, the road began when my oldest was 4 and his preschool teacher commented about his excessive eye blinking. The eye doctor saw no problems. He then began sniffling and clearing his throat a great deal. So off to the doctor and allergist.  Yes, a few allergies but “nothing to worry about”. I kept thinking there was more. It didn’t seem to bother him, but other people were easily annoyed and would often comment. After three years of symptoms coming and going and numerous doctors telling me all was fine, he started a repetitive hand flipping movement that obviously was not allergies and obviously not typical! By then, I had figured out what it was and took him to neurologist who specializes in TS. The neurologist diagnosed him with Tourette Syndrome, along with ADHD(attention deficit hyperactivity disorder) and OCD (obsessive-compulsive disorder). ADHD and OCD often occur with TS and are frequently the more interfering issues. My mind immediately went back to that first article. After researching, I realized that article was written prior to much being known and only reflected the worst case scenario. However, there was no way to predict if, how, or when my son’s symptoms would change or increase. I learned about the range of severity, the extent of involvement, and all the conditions and problems that could co-exist with this diagnosis. Yet the only thing I could do was raise awareness of his needs and condition at that time and wait to see what happened.

Since TS, ADHD, and OCD appear to have a strong genetic component,  I was very concerned about my other two younger sons. In addition, after 30+ years of wondering what was wrong with me, I finally got some answers. My oldest was diagnosed around 7 years old with TS, ADHD and OCD with a few other characteristics thrown in and my middle son has TS and ADHD, diagnosed at age 6. Because of my awareness and the severity of his symptoms, my youngest was diagnosed with TS, ADHD, and OCD when he was 3 years old. To complete the picture, I finally admitted to myself and went to the neurologist last fall, at age 41, where the genetic component was “officially” connected.

I graduated from college with honors, am a physical therapist, and by all “wordly” standards, am successful. My kids are all honor students, volunteers at church, very popular, leaders, strong athletes and by all standards, are fantastic young men. One of my goals is to increase awareness by sharing the struggles and modifications we’ve faced. But more importantly, my primary goal is to share how this has shaped who we are today and how a seemingly devastating condition may possibly have some positives. I think you will see that it’s not about a specific diagnosis and it’s not just about Tourette Syndrome, it’s about how all of us look at and what we do with what life sends our way.

I hope it touches you, I hope it affects you, and I hope you share your thoughts. I hope it reinforces or changes the way you look at things. I hope it helps just one person move forward on their own journey. I can’t wait to hear.