What is Tourette syndrome (TS)? To people who do not have it, it is probably not what they think. To fully understand this baffling disorder you must be afflicted with it. There is no other way. Even then, there are no guarantees. The everyday feelings and urges to perform the tics that are symptoms of TS are unlike any that a person without TS could imagine. There are as many cases of TS as there are people who have it. No two cases are exactly alike. This book was put together in order to raise awareness for TS. After reading the stories you will not totally understand TS. That is a given. It is my hope that the readers will understand it just a little bit better. Even if just one person learns more about TS or gains a greater understanding of TS as a result of reading this book, it will be well worth the time and effort it took to write it.
Tourette syndrome is an often, misunderstood neurological disorder. The main symptoms are what are called “tics”. A tic is defined as an involuntary, sudden, rapid, repetitive, unbalanced, motor movement or vocalization. The tics occur many times a day, nearly every day.
The most common motor tics are rapid eye blinking, shoulder shrugging, squinting, and facial grimacing. Some of the less common tics include grinding teeth, neck jerking, flailing arms, biting nails, and toe-curling.
The most common vocal tics are throat clearing, sniffing, grunting, coughing, and stuttering or stammering.
There are a few important facts about TS that are important know. Up to one in 100 schoolboys have some form of TS. Three to four males have it for every female. The diagnosis is often missed. TS symptoms usually decrease with age, but not always. TS is an inherited disorder. Learning disorders, panic attacks, school phobias, speech problems, and sleeping problems are common too.
People with TS usually also have either ADHD (Attention Deficit Hyperactivity Disorder), or OCD (Obsessive Compulsive Disorder). Many people with Tourette’s have both of these accompanying disorders.
When most people think of TS they think of the disorder where people with it swear uncontrollably and profusely. This symptom of TS (coprolalia) is the easiest symptom to recognize, but it is also the rarest. It is important to remember that coprolalia is present in less than twenty percent of TS patients.
Most people with TS, when describing a tic, say that they feel a sudden tension building up that must be relieved by performing the tic. Tics are suppressible for varying lengths of time. The longer the tics are suppressed the more the tension builds up and the more there is a need to release them.
Another major characteristic of TS is a waxing and waning of the symptoms. This includes both a change from one tic to another, to the complete disappearance of symptoms for varying periods of time.
The tics usually begin during the ages of five through nine, but symptoms can start at any time. There have even been some cases where they started late into adulthood.
While motor and vocal tics are the main symptoms used to make a diagnosis, and they are what are most identified with TS, there are many other problems that can be associated with it, the main of which are behavior related.
The people with TS who suffer from these behaviors are often angry, argumentative, and confrontational. Everything has to be their way or is someone else’s fault. One minute they’ll be fine and the next minute they’ll be in a rage. They tease their siblings relentlessly. They have a short temper, smart mouth, talk back, throw temper tantrums over nothing, and won’t take “no” for an answer. Many of them lie and steal too. Of course, it is difficult to tell if a person’s TS is causing these behaviors or something else is, but many studies of TS patients have shown that these behaviors are much more common in them than in people without it.
Very few people with TS have symptoms that are bad enough for them to require medication. Medication is usually only prescribed when a person’s symptoms prevent them from doing routine activities. Medication must be carefully monitored and doctors’ instructions must be followed precisely to benefit from them. Almost all of the medications have side effects, some of them many and some of them major. Many TS patients decide to live with their symptoms and stop taking medication because living with the side effects is more than they can bear.
This book will probably make you laugh. It might even make you cry. I have told my story in a brutally honest way. Even though there is almost no chance of you walking in my shoes, I have told my story the best way I know how to help the readers get a glimpse of what people with TS go through every day of our lives. I am proud to present to you my book about what makes me “tic.”