Different Sides of TS

Having Tourettes for 15 years, I thought I knew everything about them. Or, at least everything about mine, but every once in a while I learn something new.

I have learned a lot about myself during this time. I have my normal everyday tics and noises that consist of hitting my sides, tightening every muscle in my body, as well as squeaks and grunts. I know that when I’m really happy or excited my tics are exemplified. My squeaks get louder and I have a full body tic where I’m smiling. When I’m mad or really upset I usually grunt and have a full body tic. I know I have my tics that only happen when I’m in the car, where I very quickly hit the gas with my foot revving the engine, or I ever so slightly turn the wheel quickly in one direction and then place it back going straight. I know whenever somethings on my head, such as sunglasses or a beanie, I usually have a head tic where I throw my head back. Along with that I have learned that too many sugary foods such as simple carbs (they turn into sugar in your body), sweets, and fruits make them worse. I’ve learned that when my tics are really bad and I have a lot of excess energy running or heavy duty exercising can help reduce them. I know if I do not take my medication at the same time everyday, or if I miss a couple of pills that my tics will get worse. I recover faster from too many sugary foods than missing my medication. There are waxing and waining period for Tourettes, and in the spring they usually get worse.

This is the majority of what I’ve learned, but what others notice and do can take me by surprise. When I have a lot of little tics and I don’t realize them, sometimes someone will let me know and I’ll be stunned thinking, “I thought I hadn’t been ticing at all.” When I get distracted and stop ticing all together because, in a sense, I have “forgotten” I had tourettes, I am surprised when someone brings it up because I didn’t realize I hadn’t ticed in X amount of time. I’ve found out when I become close to people, they normally don’t even realize I’m ticking anymore because they get used to is, which is nice for me to know. But my favorite was when my best friend asked me what I was concentrating on over the phone, and when I asked how’d she knew, she told me I have different tics when I’m concentrating, which I never knew.

Through trials and tribulations I have learned a lot about myself. I am consistently growing and trying to find more out about TS, and about my form of TS. It is just nice to know I’m not the only one discovering new things :)

It Has Been A While

Hello there!
I had been a blogger on here a while ago. Sadly, time had gotten away from me because of college and my studies, but I have more time on my hands so I wanted to get back into this!

I believe when I had started blogging I was either a senior in high school or a freshman in college. A lot has changed since then. I am currently a super senior in college. I have one final class this semester before graduating in December. College has been a lot of fun, and I truly feel that throughout this experience I have found myself. I know what I want to strive for to better myself and continue on my path of becoming the best me possible, and I believe I have matured into a woman who is a lot different then who I used to be (which I am very happy about). In high school I was very insecure. I looked to my peers on how to act, what was cool, and who I thought I wanted to be. I wanted to fit in, and honestly, who doesn’t? But high school was hard, I was only 18 when I graduated. Now being 22, almost 23, I realize how much I didn’t know about myself. I used to define myself only as the girl who has Tourette Syndrome. That was honestly all I thought people saw me for, but I was wrong. After some therapy and work, I was able to see that my TS was not who I was, it was only a small portion. I am a lovely, smart, funny, and charismatic woman who loves learning and being silly! Those are just a few words that I would sue to describe me. Now, I do not see my tourettes as a burden, but something that has made me stronger, something that I wouldn’t want to change. Instead of being ashamed of my tics, I have grown to continually learn more about them and myself and laugh with it. When I have a really excited tic, or when I’m really happy I usually tic and then giggle and smile. My friends know how I’m feeling without me having to tell them because of it. They know my happy tics from my mad tics, and my concentrating tics from my everyday tics. It has made me me, and now when people describe me and they say you know, the blonde girl who has tourettes? I’m not ashamed or mad, I’m happy about it. It makes me stick out, in my opinion, in a good way.

Granted, having TS can still be challenging. I still get some mean glares, or people making fun of it behind me back, but they don’t matter to me. If they knew me as a person and if they can’t put two and two together realizing that if I’m continuously twitching I’m not doing it on purpose, then I don’t care about them. They’re not important enough for me to spend time on. I’ll get this in passing sometimes, but it’s okay. I try to advocate as much as possible, but sometimes you can’t get to everyone. And honestly, I love advocating about it. I love when people come up to me and ask if I’m okay, even if it’s in passing. It makes me so happy because it shows me they’re concerned and care. I love educating and allowing someone to see if firsthand, so maybe the next time they see someone who has similar signs they’ll know and possibly be able to help or make the connection that this person has TS. Even if they can’t remember the name, they’ll think, oh hey wait I was that girl who had something similar to this, this person is okay.

I am happy there is more awareness and recognition for TS. I remember in 3rd grade when I was advocating for it in class, no one knew about it. In those years, times truly have changed. Almost always now whenever I tell someone I have tourettes and ask if they know what it is, they say yes. I still sometimes get ones who don’t know, but I love telling them and helping them understand its involuntary, just like a sneeze. I feel like educating others on it is so important, just like any other disability, or as I would prefer to call it, a little something extra.

Anyways, this post is already way too long. But it feels good to be back. I will be writing again soon, and I hope that if you guys ever have any comments, need help, or even advice, you’d leave a note. I love helping others, especially on this subject.

I hope you all have a wonderful day and I’ll talk to you soon!

Miss Middlesex County Outstanding Teen and her family prove Strength in Beauty

The Garcias are this year's host family for the sixth annual NJ Walks for TS at Mendham. They invite walkers and runners to register at www.njcts.org.

The Garcias are this year’s host family for the sixth annual NJ Walks for TS at Mendham. They invite walkers and runners to register at www.njcts.org.

There’s nothing that the love of family can’t accomplish.

Together, the Garcia family of Rahway is working hard to raise awareness of Tourette Syndrome and improve understanding of the complex disorder among healthcare providers and educators. They are the host family of this year’s NJ Walks for TS at Mendham, a 5K walk and fun run on November 14th.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people, or an estimated 20,000 school-age children in New Jersey today.

“Not many people know that TS is a syndrome that does not come alone, it encompasses other disorders and disabilities,” said Clarivel Garcia, mother of three girls, the youngest of which has TS.

For the Garcias, Tourette Syndrome advocacy is a family affair.

Sarah Garcia, the youngest of three girls, lives with TS. Her older sisters, Clarisavel and Leandra, along with their mom and dad, Jose, are each raising awareness in their own way. Earlier this year, Leandra won Miss Middlesex County Outstanding Teen 2015 for the Miss America organization.

Leandra Garcia is Miss Middlesex County Outstanding Teen 2016 and is using her platform to raise awareness of Tourette Syndrome in honor of her younger sister Sarah.

Leandra Garcia is Miss Middlesex County Outstanding Teen 2016 and is using her platform to raise awareness of Tourette Syndrome in honor of her younger sister Sarah.

“The [contestant] Queens are encouraged to be involved with the community and pick an organization close to their hearts,” said Clarivel. “She picked NJCTS for the past three years to spread awareness in honor of her little sister.”

The goal of her family’s participation in NJ Walks for TS at Mendham, according to Clarivel, is to “help the walk raise sufficient funds to continue to educate schools, teachers, students, and families in the community.”

“The public should attend NJ Walks for TS to help educate the community and provide support for the other diagnoses that may be involved,” said Clarivel. “Attending this event will give TS more positive exposure and, in the long run, help reach many areas of support needed by our families and communities.” Registration is available at www.njcts.org.

All proceeds from NJ Walks for TS benefit the Education Outreach Program of the NJ Center for Tourette Syndrome (NJCTS). The outreach includes on-site training for doctors, nurses, social workers, teachers, and students at schools and hospitals across the state; college workshops for educators-in-training; peer presentations to encourage acceptance and anti-bulling; and youth leadership training. NJ Walks for TS at Mendham began in 2010 and serves as the flagship event in North Jersey as the movement has grown to include NJ Walks in Central (Princeton) and South Jersey (Medford Lakes).

NJ Walks for TS is making it possible for NJCTS to provide the latest information to help professionals identify, diagnose and manage TS and its associated disorders.

“We have reached 82% more educators and students in the past year alone,” said NJCTS Executive Director Faith W. Rice. “This is a testament to the success of NJ Walks for TS, but we still have more professionals, children and families to reach.”

“You don’t have to have a personal connection to TS to help make life better for thousands of children and families across the state,” said Rice. “Join us for a fun day in Mendham or consider making a donation—all proceeds will go to work at school or hospital near you.”

The Garcia family is working to make this year’s event the biggest yet. To join them, or to contribute to the outreach work happening across the state, visit www.njcts.org.

NJ Walks for TS at Mendham is set for Saturday, Nov. 14th at Mendham Borough Park at the intersection of Mountain and Park Avenues. The event is rain or shine and check-in will begin at 8 a.m. For more information about the event, or to learn more about Tourette Syndrome, visit www.njcts.org.

October is National Bullying Prevention Month

The NJ Center for Tourette Syndrome joins the movement to prevent bullying,
expanding its Youth Advocate Program

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

This October, schools and organizations all across the country are observing National Bullying Prevention Month. All students should feel safe in school and have the opportunity to grow and thrive, academically and socially, and through its  Youth Advocate program, the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is taking special steps to prevent bullying.

NJCTS Youth Advocate presentations inform youth about Tourette Syndrome (TS)—a misunderstood and misdiagnosed disorder that affects 1 in 100 school-aged children who are often the targets of bullying. Advocates are 13- to 18-years-old and either have a TS diagnosis or live with a sibling or family member with TS. In addition to providing an overview of the neurological disorder, the Advocates promote understanding and tolerance, and deliver a strong anti-bullying message. The presentations have grown to include a discussion of the Six Pillars of Character: Trustworthiness, Respect, Responsibility, Fairness, Caring, and Citizenship.

“NJCTS has long been and continues to be one of the most important organizations addressing childhood bullying in NJ schools,” said Dr. Stuart Green, Director of NJ Coalition for Bullying Awareness and Prevention and Associate Director of Overlook Family Medicine. “Their innovative youth advocacy program provides a much-needed service. The program empowers and gives voice to youth with TS, shines a light on a commonly misunderstood and stigmatized condition, and helps NJ youth and their teachers strengthen their empathy for those who are vulnerable and targeted. The NJCTS Youth Advocates are heroes for an important cause – they deserve our recognition and support.”

In recognition of the efforts to improve school climate and reduce rates of bullying, NJCTS regularly coordinates Youth Advocate presentations in schools and community groups, reaching thousands of students throughout New Jersey. Since the program’s launch in 2009, NJCTS Youth Advocates have conducted more than 250 presentations, raising awareness and increasing sensitivity and understanding.

“Our Youth Advocates foster understanding, sensitivity, and tolerance of TS while displacing the myths and stereotypes that are often associated with this misunderstood and misdiagnosed disorder,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making biases a thing of the past.”

During National Bullying Prevention Month, NJCTS will be training a new “class” of Advocates on Saturday, October 24 from 10 a.m. to 4 p.m. at the Morris County Library, 30 East Hanover Ave., Whippany, NJ 07981.

For more information or to attend the training, please contact Gina Maria Jones, M.Ed, NJCTS Education Outreach Coordinator, at gjones@njcts.org or 908-575-7350.

Academy Empowers a New Class of Teen Leaders

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

The NJCTS Tim Howard Leadership Academy honors a new set of leaders in the Class of 2015.  Each of the 35 participants took part in an intensive four-day training promoting self-empowerment, self-leadership, and resilience—all important skills to succeed while living with Tourette Syndrome.

Tourette Syndrome (TS) is a neurological disorder characterized by uncontrollable movements known as tics. As many as 1 in 100 people show signs of TS which is frequently accompanied by other disorders including ADHD, OCD, and learning disabilities.

Created in 2014 in partnership with U.S. Men’s Soccer goalkeeper and TS advocate Tim Howard, the Academy is the only leadership program for teens diagnosed with Tourette Syndrome in the nation. During the opening ceremony, Howard’s inspiring video message welcoming the Class of 2015 encouraged them to “learn as much as you can from the expert team we have assembled and enjoy the time together with others who will guide and inspire you.”

Our partners at creative agency BNO introduced The GreaTS movement during opening ceremonies. This powerful movement aims to spread awareness of TS around the world and inspire individuals with TS to come out from behind the shadows, which is also a primary goal of the Leadership Academy. BNO premiered a video about The GreaTS featuring Tim Howard and the room erupted with applause.

The Academy took place at Rutgers University from August 6-9 and emphasized the biological, psychological, and social components surrounding a TS diagnosis. Leading TS experts from area Universities including Rutgers, Yale, and the University of Pennsylvania led presentations and workshops throughout the program. Participants had the opportunity to learn from the neurologists, geneticists, psychologists, and social workers and were able to ask their most burning questions about their diagnoses.

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

“We want them to leave as experts, ready to face a public who is misinformed about TS,” said Leadership Academy Director Melissa Fowler. “They have a unique opportunity to learn more about their diagnosis from our expert presenters.”

Each of the 35 participants—who hailed from New Jersey, New York, Pennsylvania, Illinois, Maryland, Indiana, Washington, Virginia, and California—contributed thoughtful questions and were eager to share life-skills tips with one another. They were assigned to teams led by coaches—successful young adults with TS.

In smaller “Team Talk” sessions, personal, powerful, and emotional discussions continued about the four pillars and developing the goals participants set for themselves as a final project. The coaches were asked about driving, getting accommodations in college, how TS affects them at work, and dating.

“It means so much to teens to engage with coaches and presenters who are the ideal role models,” said NJCTS Executive Director Faith W. Rice. “Learning from others who are living successful lives with a TS diagnosis is invaluable.”

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

Over the course of the Academy, participants spoke of resilience and leadership and defined personal goals for themselves. With the lessons and skills they gained, this class will step up to be the voice of awareness in their own communities.

The 2016 NJCTS Tim Howard Leadership Academy dates will be announced soon. For more information visit www.njcts.org/teamup.