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Living With Tourette Syndrome

Living With Tourette Syndrome

Neal Hermanowicz (Director of the Movement Disorders Program) gives expert video advice on: At what time of day am I most likely to suffer from Tourette syndrome?; Can a tic occur while I am sleeping?; What should I tell my child who has been diagnosed with Tourette syndrome? and more...

At what time of day am I most likely to suffer from Tourette syndrome?

In regards to Tourette syndrome People are more rested in the morning hours. it may be a time the tics are less troublesome to them and as the day continues they become tired and stress accumulates the tics may emerge. Tourette syndrome also of depends on what the situation is, if they are in a stressful meeting or in a stressful classroom at school. People sometimes the kids or even people at work will suppress their tics during the course of the day and then when they come home in the evening or after school in the evening after work or after school in the afternoon they let them all out. It may be more evident in some households toward the end of the day when people come home to have Tourette syndrome.

Can a tic occur while I am sleeping?

It has been described in the medical literature that tics can persist in some form, movement during sleep. It's one of the few movements actually that is reported to be evident in some fashion during sleep. With most movement disorders, the involuntary movements of Huntington's disease or the tremor of Parkinson's disease are described as being almost, if not fully, but almost absent during sleep.

What should I tell my child who has been diagnosed with Tourette syndrome?

Foremost, they shouldn't be made to feel like a patient. As though they are sick, although this is a neurological diagnosis and I think that's sort of a fine distinction, but it needs to be made. These movements, these ticks, or the behaviors associated with Tourette's are neurologically driven. This is not intentional behavior, this is not a psychological problem, and this is not the fault of the person who has it. That needs to be understood by not only the parents, but by the child as well so that they don't feel that they are abnormal in some fashion. The obsessive compulsive behaviors which can be distracting and troubling to people, doesn't indicate that they are losing their mind, or that they are in some way mentally severely impaired. This is a neurological diagnosis and needs to be addressed as such. I would hope the children with Tourette's syndrome are not categorized as being sick in some way, or as being mentally defective, or mentally retarded, which they're not. Their intelligence is normal in some cases superior.

When do I need to tell my family and friends that I have Tourette syndrome?

I think an important point, is having the understanding of friends, family, teachers, and coworkers that when that when the tics are apparent, and recognizing iy for what it is. That this is not a psychological disorder. This is not an attention getting disorder, an intentionally disruptive disorder for children in school. This is something that is a neurologically driven symptom, these tics. Both a motor and vocal tics are a neurological diagnosis. This is a not a psychiatric diagnosis. People who have the understanding of their family, support of their family, and their teachers, I think fare so much better and avoid some of the other problems like the depression that may occur in people with Tourette's, or the difficulty with inter personal relationships that some people I think develope as a consequence of coping their Tourette's. And they see negative feedback regarding their tics. Or perhaps even some of the obsessive behaviors. These are not things people can control themselves. They would if they could. And when people receive negative attention or punishment from their teachers, from their peers, and do not receive teaching, it just makes a situation that can be challenging all the more difficult. I remember one of my patients from the past, was a freshman in college and had been coping with Tourette's fairly successfully through high school, was sitting in the front row of a large row of the lecture hall, when her professor suddenly pointed at her and said stop doing that, and that was when I saw her again. I had not seen her for quite some time. It was such a humiliating and embarrassing event for her, that she had to come back felt that she needed to be on medication because of being pointed at in front of a large group of people, as misbehaving.

Which famous people in history may have suffered from Tourette syndrome?

The most prominent example of somebody who is hugely creative from early in his life and started to have Tourette's was Mozart. There are other figures throughout history that have been thought to have Tourette's Syndrome. I think Alexander The Great was thought to have Tourette's Syndrome in retrospect. These are people looking back and thinking retrospectively but probably the most prominent person would have been Mozart.

What do I need to tell my employers about my Tourette syndrome?

Tics may persist and sometimes do into adulthood and as adults people are coping with their tics and maybe the associated behavior problems with Tourette syndrome in their marriage, in raising their children, and in their workplace as well. And again I think a sense of understanding. You have to figure out how comfortable you are discussing a diagnosis with your co-workers, with your supervisor, with your boss, that's not necessarily always a good thing to do but if the tics are an issue at work then it may need to be addressed in some fashion. And it maybe helpful in alleviating the stress of coping with it by having the recognition for what it is and not some sort of psychological issue but rather a neurological symptom. I think each person is going to have to feel their own way in terms of how much they discuss with their co-workers and how much they discuss with their supervisor or with their boss in terms of their own healthcare status or diagnosis that they may have. But I would hope that in their home life that with their spouse, with their partner, with their kids that it's understood what this represents especially since it does run in families quiet often.

How will I be able to drive my car if I have Tourette syndrome?

The vast majority of people with Tourette syndrome are going to be able to safely drive unless they're taking medication that interferes with their level of alertness. Some of these medications, benzodiazepines or neuroleptic medications in particular, may cause drowsiness or lack of attention as a side effect. Under those circumstances, people have to be very careful about driving. It would be unusual that the ticks or obsessive compulsive or other behavioral issues associated with Tourette's are so severe that it prevents driving.

What organizations are available to Tourette syndrome patients?

There are several organizations available worldwide. In the United States there's the Tourette's Society of America which is based in New York City. But I think anybody who goes on to the Internet and does a search on Tourette's Syndrome will find, on the Internet, organizations for support, education, and so forth, and raising also research dollars to investigate Tourette's syndrome.

What research on Tourette syndrome is being conducted?

There is brain research being accomplished in Tourette Syndrome. There is a brain bank established where brain tissue has been collected. People don't die from Tourette syndrome, but somebody who has had Tourette Syndrome will die for other reasons and make a brain donation, which is then used to study the chemical changes that may be associated with Tourette syndrome. So that's an active investigation currently.