NJCTS discusses Tourette Syndrome at Centenary College Abilities Day

HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.

Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.

Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.

During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.

We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.

Tim Howard and NJCTS aim to score with soccer clinic

EDITOR’S NOTE: This story originally appeared on MyCentralJersey.com on April 15.

SOMERVILLE – Not usually one to let a goal get by, acclaimed U.S. soccer goalkeeper Tim Howard is more than happy to make an exception for the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). Howard and NJCTS are looking to score with a soccer clinic fundraiser in June.

Howard, who was diagnosed with Tourette syndrome (TS) as a child, and NJCTS have created Team Up With Tim Howard, a one-day soccer clinic on June 4 featuring the Rutgers University soccer teams at the Rutgers University Soccer Stadium, Yurcak Field in Piscataway. Kicking off a yearlong awareness campaign, the Team Up With Tim Howard soccer clinic will serve to directly benefit August’s NJCTS Tim Howard Leadership Academy, a four-day program from teenagers that focuses on empowerment.

“Last June, the world’s eyes were on me as the goalkeeper for Team USA,” Howard said. “The 2014 FIFA World Cup in Brazil was the experience of a lifetime, one which I treasure. Not only was I able to play my best, but I was able to bring Tourette syndrome to the world stage. I have made it my goal to debunk the myths and bullying that come with the disorder. I have found that one of the best ways to do this is to educate people.”

While he lives in England as the goalkeeper for the Everton club, Howard, is coming home and will be participating in the clinic. Howard, a native of North Brunswick, gained attention last year as the goalkeeper for Team USA, setting records for his World Cup saves.

Howard has been an integral part of the organization since it was founded. As a man living with TS, Howard is recognized globally as an advocate and role model for those — especially children — who have TS and other neurological disorders.

The hands-on clinic designed to improve soccer skills and provide awareness about TS and associated disorders. Not only will the players learn some great soccer moves, but they will also learn that a person with TS can be anything they want to be — even a world-class soccer player, said Faith Rice, NJCTS executive director and founder.

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52 Weeks of TS: Week 50

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 TWO 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’ve been doing a lot of thinking lately, thinking about what I’m hoping to achieve through my writing. I was asked about this topic this week when I did an interview about blogging, writing and reaching out to the TS community. The interview was for the TSA newsletter, and it got me thinking: Besides a little ADHD and having a little difficulty concentrating, I don’t have that many problems writing. I can set a time line and finish the project in that time line. If I sit down in front of my computer, the words just roll onto the screen. I might not have a hard time now, and enjoy what I do, but this wasn’t always the case.

Back in school, I was always behind with my work and it was always a struggle. Being in a classroom full of students with all sorts of distractions did not make it easy. I know there are still children today who are struggling the same way, too scared and embarrassed to say anything. I wish I knew then what I know now, maybe I could have changed something in my educational process to make it easier and more enjoyable.

I have noticed recently that my tics are changing. I guess that they are always changing, but this is different. I’m not sure if they’re getting worse or if I’m just having a harder time suppressing them. I have said before how I have been getting more comfortable with my tics and not feeling the need to suppress them, but even in situations when I’m trying to suppress them I am finding it to be a struggle.

I’m starting to think it might be the Chinese herbs I’ve been taking. I have been taking them for more than six weeks now, and I don’t feel as if it’s helping at all. Now I’m just in a panicked state, wondering if I screwed up my body more with the herbs. I have made a decision to stop taking them, I have not spoke to my herbalist about this yet, but I just feel as if it’s something I need to do.

Our bodies are constantly telling us what they need. If we lack vitamin C, we crave orange juice; if we need protein, our body will let us know it needs some. This is how I’ve been feeling this week. I have been having many smaller tic attacks that I can’t control, and there is something in my body that is pointing to the Chinese herbs. So yet again, one more failed attempt to find my nonexistent path to normalcy.

One of the new tics I have noticed is a violent flipping in the middle of the night. I always thought I did not tic in my sleep. Even my husband has said that he knows when I’m asleep because I don’t tic anymore. In the past few weeks, I have noticed that In order to roll over, I tend to do this violent full body twitch to roll over. It’s so violent that I actually wake up. It wasn’t until this week that I started wondering about this new strange movement. Is it a new tic?

The other morning my husband woke up and told me I was not allowed to keep complaining about his snoring if I was going to continue this violent flipping thing I was doing. That was it, I was convinced that this was a new tic. My husband has noticed this new tic, and it is even keeping him up. Well I guess it’s even with the amount of time he keeps me up with his snoring.

I think this new tic was the last straw in my decision to stop the Chinese herbs. Is this new tic caused by the herbs or is it just more of the waxing and waning of the syndrome? It’s just gets me thinking more about what I might be doing to my body with all of these attempts to find a cure. Is there a cure? Is little old me going to be the one to find it? Is my life that bad that I need to keep attempting to do this to my body?

The truth is my life is good. I’m happy; I just do these weird movements. I’m sure I could continue educating people about the reality of TS, but how much would I really get across if I looked normal. If I twitch and tic, it will be easier to start a conversation if someone notices.

Maybe all of these attempts to find the cure, might be one more way for me to hide from whom I am, and that’s not what I want to do. Throughout this year, I have tried so hard to educate people and every time I do, I experience the greatest, warmest feeling inside. When I was hiding from who I was, all I felt was shame and loneliness. Why would I want to go back there?

I still find myself doing little things to hide from who I really am. This week I did some shopping for some winter clothes and I realized something else. I love hoods. Most of my shirts, sweatshirts, or coats have a hood. Wintertime is the best time for me to show off this love, but there is more behind this fascination. It is a way for me to hide. If I have a hood on, I feel like people can’t see my tics.

Armed with my hood, my sunglasses, and my earphones, I am hiding from the world. I think it is time to take off my armor, take off the sunglasses, take out those earphones, and pull that hood down off my head. Life is a learning experience and we spend our whole life doing this. Perhaps the whole reason I have gone on this journey was for me to learn. Let the world see me for who I am.

Until next week, “I’ll tic to you later.”

Graduate students at Montclair State get tutorial on Tourette

On March 23, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) held a Graduate Student “Faculty” In-Serivce presentation at Montclair State University. Presented by Dr. Michelle Miller, more than 75 attendees — which included graduate students from the School of Psychology — were given a comprehensive look at Tourette Syndrome, ways to treat it, and ways to accommodate it in and out of the classroom.

The attendees described the presentation as “very informative & comprehensive” and an “excellent presentation with well-displayed, well-paced information.” To schedule one of these presentations at your location, please contact me at 908-575-7350.

Gina Maria Jones, M.Ed.

Education Outreach Coordinator

NJ Center for Tourette Syndrome & Associated Disorders, Inc.

908-575-7350

www.njcts.org

Rutgers graduate students learn about Tourette Syndrome for 12th straight year

Earlier this month, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) presented to incoming graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology (GSAPP) for the 12th straight year!

Led by Dr. Robert Zambrano and NJCTS Youth Advocate Tommy Licato, this required lecture is an important part of NJCTS’ relationship with Rutgers and a starting point for students who might be interested in our TS practicum program. The bottom line? Every doctoral candidate at Rutgers University for the past 12 years has heard a lecture from a doctor, a psychologist, a family with Tourette Syndrome and NJCTS!

52 Weeks of TS: Week 49

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 THREE 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.

OK, this is really it. We are coming so close to the end of this series. I really can’t believe how fast this year has flown by. Is it really already the end? I spent the evening in a minor anxiety attack. I guess the fish oil does not help with all anxiety. I tried to keep distracted with TV, but it was not helping that much. I did end up having to take a Klonopin just to relax myself so I was able to go to sleep. By the time I woke up the next morning, I pretty much forgot about the events of the night before, but I was quickly reminded.

I was walking along the area rug in my bedroom when I heard and felt a crunch under the rug. This is usually no big deal. I am always finding something that the cats got a hold of and have hidden under the rug. I have found pencils, matches, pen caps and whatever they get a hold of, but I never expected to find a mouse. Yep, a mouse. I felt and heard the crunch, and without thinking, I just lifted the corner of the rug to find out what they put under there this time. There it was, lying lifeless but its germ and disease slowly spreading through my home.

After a minor freak out, I knew I had to remove the deceased body myself. I went into the kitchen, and retrieved a pair of tongs and a garbage bag. After picking up the mouse with the kitchen tongs and putting the mouse and the tongs in a large kitchen garbage bag, I threw everything down the garbage shoot and went on to Lysol almost every square inch of my apartment.

I have spent most of the past 48 discussing different ways and options that I was attempting to help with any of my symptoms of TS. One of the most effective things is fish oil for my anxiety, but it is definitely not working on OCD and Germaphobia. I have tried many different paths, a lot of them with no outcome, but that’s just my case.

People with TS are all different, so something that doesn’t work for me, might actually work for someone else. I have been trying acupuncture and Chinese herbs and I am closely approaching the six-week period where I should be seeing some type of change, but I haven’t seen much of a change so far. I have tried to pay attention to any differences in my body, but all I can notice is maybe more tics, or just a harder time trying to suppress my tics. I don’t know if this is the Chinese herbs, or just the comfort and acceptance that has grown inside me.

I have grown a lot this year, and become very comfortable with myself and who I am. That’s what life is for, to grow. Even though the year is close to the end, I still plan to continue on my journey of growing and educating and I hope you do, too. Until next week, “I’ll tic to you later.”

A blessing of a T-shirt for TS Awareness Month!

Kane is finally starting to come out of his shell and feel comfortable in his own skin. I have watched him grow and blossom over the past year, and I am so proud! He has become more vocal in school, raising his hand more and getting more involved. He has turned into such a chatter box. His family and I are so proud of him and how far he has come! 

Kane is also so blessed. He has so many supporters in our community! One of his supporters is selling the shirt below on Kane’s behalf for TS Awareness Month! He is going to be so surprised and excited! Thank you again!