New Jersey 7th-graders learn a lot from Youth Advocate Presentation

My daughters Sarah and Anna did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…they killed it.

The presentation went great.  The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want the girls to come back next year for the incoming 7th grade. Here are some pictures:

52 Weeks of TS: Week 46

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 6 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’m tired!! I have to say, I think this has been one of the longest, most exhausting weeks that I’ve had in a while. I had a freelance job doing hair and makeup for a high school musical, which I do about 5 times a year, but this one was different. I usually design the show three weeks in advance, but I missed two weeks. I ended up designing the show on Monday, and we opened on Wednesday. This just made for a very stressful week, not anxiety, but a lot of stress.

Just like anxiety, stress triggers my tics, so it’s been a very ticcy week. I feel as if my brain has been bouncing around inside my skull all week. My neck tic has been bad all week, and I’ve been taking aspirin for the constant headache that does not seem to go away.
Usually, I try not to suppress my tics in my everyday life, but while I’m working in the high school all bets are off. I just feel as if I have to suppress them.

I guess it has to do with my own high school experience. There was always constant mocking and my fellow students were always making fun of me. Once I walk back into a school, it tends to bring me back to that time and place. It’s a cruel world we live in. I try not to suppress my tics in many adult situations, but when you’re dealing with uneducated ignorance and immaturity of high school kids, it can be hard to explain. How do you teach someone something who thinks that they know everything?

A person with Tourette Syndrome has to have thick skin. It’s not something we are born with, but we have to grow it. I thought about this a lot this week, and I’ve realized that we have been supplied the greatest weapon for our fight to educate — our mouth. The more we open our mouths, the thicker our skin becomes and the stronger we become, but it can be a hard thing to do.

When we are kids, we are scared, nervous and possibly beaten down by ignorance. It can take a lot for those shy kids to battle their own fears and demons, to turn around and speak about the very thing that has brought them down. Look at me. It took me about 15 years to start my battle against ignorance, and I still deal with fear. Despite the fear, I still try to fight the fight and continue to educate people.

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The Tic Toc Stop Orthotic: The Tic Guard

TicTocStop is dedicated to the science side of TS and finding a cure.  We’re supportive of the medical community and all efforts to combat and find a cure for Tourette Syndrome, but we do more than look to fund general research.  We are actually coming up with and finding new ways for people to cope with this afflication and taking the steps necessary to gain medical validation.

The Tic Toc Stop Orthotic: The Tic Guard

We came up with an idea of an orthotic — a mouth appliance that potentially has the effect of mitigating the frequency and severity of tics associated with TS.  It’s a new idea in treating the effects and we’re proud of the work we’ve done as a team to design and develop this idea to the point where it is a real product now undergoing Clinical Study.

>> Read Craig Carton’s announcement letter.

>>We’re actively seeking volunteers to take part in the study. Sign up to be considered as a Clinical Trial Participant.

The University of Tennessee Clinical Study 

We knew that the Tic Guard was a good idea and were encouraged by our own informal testing and results.  So we didn’t stop there…we found a terrific partner in the University of Tennessee Health Science Center, and got the FDA’s approval to initiate a full Clinical Trial. We really believe the results will prove to be life-changing for People with TS.  Read More about the Clinical Study here.

Sign up to be considered as a Clinical Trial Participant.

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4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

What’s A Tic? Part 2 — Tic Classifications

What Are Tics

There are different classifications for tics, motor vs. vocal (Do you do it with you muscles or with your voice?) and simple vs. complex (How many muscles groups are involved in the movement?) As I said in part 1 of this 3-part series, there are all different kinds of tics, so many that there isn’t a definitive list of what can be a tic and what can’t. Why? Because every person’s body and brain is different. This means the tics his brain comes up with will be different from those of his neighbor with tics.

I created this table based on information from Mayo ClinicTouretteSyndrome.net, the National Institute of Neurological Disorders and StrokeTSA-USA (one of the leading support groups for individuals with Tourettes in the United States), and my own personal experience:

Common Tics

The tics listed here are some of the more common tics found in people with Tourette. My first tic was blinking, which was then followed by throat clearing, Squeaking, and my lip touching tic. My tics showed up as many tics do. Rapid, repetitive blinking is seems to be considered the most common first tic that shows up in children with Tourette Syndrome or tic disorders.

There are more extreme versions of tics that can be found in more severe cases, however. Probably the most popular one is Coprolalia, or the infamous swearing tic, where individuals who suffer from this particular tic can blurt out socially and culturally inappropriate words and phrases. There are a few things to know about Coprolalia, however:

  1. Coprolalia is found in only 10% of people with Tourettes, according to Live Science’s article, “Why Does Tourette’s Make People Curse Uncontrollably?” (I’ve heard 5%-15% from other sources as well.)
  2. Live Science also says that Coprolalia is said to be caused by some form of neurological damage, although we’re not sure why yet. It can also be found in individuals with
  3. The individuals who do suffer from this disorder don’t do it for attention or fun. In fact, it can be highly embarrassing when it does occur, and as with other tics, must be treated with care and kindness.

Because Tourette Syndrome (and tic disorders) are on a spectrum, the severity of tics will differ in individuals. My Tourettes is fairly mild so my tics are generally manageable with good diet, exercise and self-taught management techniques. There are some individuals, however, who have symptoms so severe they interfere with safety and health, such as this young man here:

Medical Miracle Tourettes