Regular teen blogger believes gift for poetry comes from TS

Hello there! I will be using my pen name Ruthie for this blog. I’m currently 17 years old and I have Tourette’s Syndrome, OCD and anxiety. Although it was a long road to my official diagnosis of Tourette’s Syndrome, I have lived with the condition almost all of my life.

For a long time I was misunderstood, but now that I finally understand it myself, I wish to share my experience with others in hopes that my story can help those with Tourette’s to be understood.

My tics currently are pretty frequent and noticeable and can even be painful at times but I try not to let it get me down. Though my struggle I hope to help others understand the condition better.

NOTE: RuthieP runs her own blog, A Little Bit Different: A Life With Tourette’s Syndrome, and will be writing from time to time for Teens4TS. Here is a sample from her blog of just one thing she believes about herself and other people with TS:

Just wanted to share the vast and quite prominent link between Tourette’s and creativity. … People with Tourette’s more often than not have an unusually keen creative side. I think this is true with me as well, as I have been writing poetry and short stories since I was very young. My poetry has been published many times, and I have been to some very prominent creative writing programs in the U.S.

… (There is) a slam poetry piece done by a young man named Devin. He suggests that even though having TS is hard, it’s what gives him his gift with poetry and with words. Sometimes I, too, think this is true. Sometimes people ask me where I get my gift for poetry, and I would guess that it comes from having Tourette’s. Too much dopamine isn’t always a bad thing.

Indonesian teen is in law school despite involuntary movements

I am 19, from Jakarta, Indonesia, and I studying law at the University of Indonesia. But I suffer Tourette Syndrome. It’s 
one of things I never thought I would experience in life, but as time has gone by, I’ve decided it is OK to experience this. It’s God’s will.

I first felt that I had TS when I constantly would have some involuntary movements in my neck, eye blinking and other involuntary movements that didn’t feel very good. My parents and my sisters always said that I had to stop it, but I just could not! I was doing it without thinking. 🙁

I have suffered it for 7 years now, and I feel as if I’ve lost a little bit of my academic skill — and especially sports skills. But I think I am still good enough at singing and playing my violin. Most important of all, I have been accepted to one of the best law schools in Indonesia!

That means I do not have to be very shy about what I suffer, as long as I am thankful and think that God has these things in my life for a reason. So, I enjoy life, and Tourette Syndrome is not an obstacle for me to enjoy life. 🙂

A hearty NJCTS thanks to all our contributors and readers

On behalf of the entire staff and network of board members, presenters and volunteers that make the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) what it is, I would like to extend a gracious THANK YOU to all of the contributors and readers who have helped make the Teens4TS blog a rousing success over the first two weeks of its existence.

We already have received hundreds of page hits from all over the world on our posts and comments. That might not sound like a lot in the grand scheme of things, but for a newly launched blog by an organization our size, it is a tremendous response. And in the next few weeks and months, we expect the blog to grow exponentially — especially after receiving our first submission from outside the United States! (Thank you MarieD from Belgium!)

But to make that happen, we need more contributions from you, the teens! We would love to double our growing contributor list, and all we need to bring that to fruition is to hear from you! So if you are interested in participating in the Teens4TS blog, please drop us a note today by e-mailing teens@njcts.org.

There’s nothing quite like being part of a community that is doing something big to help others, especially those in the Tourette Syndrome community — for which there just aren’t that many resources outside of the magnificent ones NJCTS provides.

So what are you waiting for? Open up your e-mail browser and drop us a line. We would love to hear from you. And after that, go join your family for a wonderfully prepared, succulent Thanksgiving feast!

Happy Holidays!

Jeff Weber

Teens4TS Blog Administrator

teens@njcts.org

Belgian teen struggles with fear, anxiety

When I was age 7, my cousin died from cancer, and that has influenced me greatly. It gave me a great fear of death, and I constantly asked my parents if I or they themselves would die. In order to minimize the fear, I began to perform certain compulsions.

I had to stop at all the corners on the streets and touch walls and the ground. I also had mild tics such as eye blinking. But that bothered me the least. I also started to state some numbers as good or bad. Three, for example, is not a good number (my grandmother died when I was 3 years old). Also, 4 is not a good number as well. It was 4 p.m. when my cousin died from cancer). These numbers still have a huge influence in my Tourette’s today.

I’m 18 now, and was diagnosed with Tourette’s at 10. Now I notice my Tourette’s a lot more. I have a lot of scary thoughts. I am easily worried, anxious, and my OCD remains a major influence on my life. What is striking, though, is that I could not live without my Tourette’s. Without Tourette’s, I would not be myself anymore.

I have had some session cognitive behavioral therapy in a center specializing in OCD and fear disorders in The Netherlands. Since the center was a couple hours from my house, I was given some therapeutic tasks to do at home that helped with my tics and OCD. I’m also still taking medication.

But I still have some problems with fear. If my boyfriend is 10 minutes late, I think the worst happened. Also, my emotions come out very expressive. When I’m feeling happy I’ll be very happy; unfortunately, when I’m feeling sad, nothing could be darker. 🙁

When I’m feeling a bit dizzy or having a little pain in my arms, I’m always worried if something medical is wrong and I should go to a hospital. Luckily, my boyfriend helps me a lot with this! He can calm me down! 🙂

Before I go to sleep, the OCD is the worst. I need to flicker with the lights, touch my nose two times, hold my hands behind my back, make some funny movements and have other tics. Also, I need to touch the ground with my feet a couple of times when going to bed, until everything feels OK.

It helps a lot for me to write all these things down, and I look forward to talking with you all!

Being a teen in control of Tourette still isn't easy

The second annual New Jersey Walks For TS event in Mendham, N.J., will take place tomorrow, Nov. 19, at Borough Park. Following is an account of how teenager T.J. Stanley, the inspiration for the event, has dealt with Tourette Syndrome since being diagnosed with with the condition at age 11.

When I first found out I had Tourette Syndrome, I wasn’t sure what it meant. What I was sure of was that I wanted to find out as much as I possibly could about the neurological condition that affects as many as 1 in 100 people.

After several years of learning what it meant to be a teen with TS, I, then 15, felt confident enough to create a documentary about what it is like to live with Tourette. Titled “TS Has TS” and available for the world to view on YouTube, the documentary was the birthing point of the New Jersey Walks For TS event.

But for me, now 18 and having fought many battles against TS over the years, being able to explain to the public what Tourette is and how it affects someone is only the tip of the iceberg. And that tip begins with what are known as tics, repeated involuntary movements and uncontrollable vocal sounds. Continue reading

New Jersey Walks For TS founder, inspiration talk about event's roots

The second annual New Jersey Walks For TS event in Mendham, N.J., will take place Saturday, Nov. 19, at Borough Park. Following is an account of how teenagers Emily Carrara and T.J. Stanley got the walk started almost two years ago.

Mendham teenager Emily Carrara has known T.J. Stanley her entire life. But even though the cousins have the same blood running through their veins and have shared laughs, stories, heartaches and other parts of life over the past 18 years, it doesn’t mean they know everything about each other — or at least haven’t known everything all along.

It wasn’t until they were 11 that Stanley, of Basking Ridge, was diagnosed with Tourette Syndrome, and before that point, Carrara had no idea her fun-loving, vivacious cousin had something “wrong” with him.

Even more time passed by — until a graduation party for Stanley’s sister Jackie a little more than two years ago — before Carrara truly became aware of just what TS is (a neurological disorder that affects as many as 1 in 100 people) and how it changes the lives of not only those who have it, but everyone around them.

At that party, Stanley showed Carrara a documentary about his life with TS — appropriately named “TS Has TS” — that the aspiring filmmaker had made and posted on YouTube. After Carrara finished viewing the video, her life was forever altered. Continue reading

Youth Ambassador on mission to raise Tourette Syndrome awareness

Hi! My name is Emily Fleischman, and I have Tourette’s. I was diagnosed with Tourette Syndrome (TS) and Obsessive Compulsive Disorder (OCD) when I was 6 years old.  As I got older, I learned to control my “tics” because I was embarrassed and afraid someone would make fun of me. I would hold my tics in all day long until I got home to a safe haven. When I arrived home, I was exhausted and moody from a tiring “tic-free” day.

I am now 16 years old (a junior at River Dell High School) and have control over my problem. But that does not mean that I have forgotten how I felt when my tics attacked me.

I am on a mission to spread awareness for Tourette Syndrome and, in the process, prevent bullying. In April 2010, I became a Youth Ambassador for the Tourette Syndrome Association of New Jersey. I went to Washington, D.C., for training and had the opportunity to meet with senators and congressmen from New Jersey to discuss Tourette education.

I speak with students at schools about Tourette Syndrome. I explain what it is, along with why you should not make fun of or bully anyone for their disorder. This presentation is the same one that Jennifer Zwilling made, and I was taught this presentation at the Youth Ambassadors training.

The Youth Ambassador training was the first event I attended where I was interacting with other teens with TS and talking openly about TS. I have now attended multiple events where I have interacted with TS teens. If you have not attended one of these events, definitely look into it! It was a great experience.

I look forward to this blog taking off!

Internet petition circulating to help stop turning Tourette into a joke

The media in all its guises uses the word Tourettes to reference any use of bad language. The inability to control sounds and movements is seen as humorous and indeed with Christmas approaching the books ‘Pets with Tourettes’ has put in a reappearance along with a new ‘More Pets with Tourettes’.

This total lack of understanding of a condition which is debilitating, socially excluding and at times extremely painful shows a lack of intellectual rigor and indeed journalistic laziness. This situation could not happen to people who are in wheelchairs or with a whole host of other conditions.

By signing this petition you will not only be helping us to approach publishers and journalists to change their ways but, if enough people sign, we may be able to start a petition to government to protect people living with Tourette Syndrome to the degree they deserve.

Tourette Syndrome isn’t a joke. Stop making it one. Sign your name here.

Inspiration for New Jersey Walks For TS very grateful for cousin's advocacy

My name is T.J. Stanley, and I am 18 years old, a senior at Ridge High School and have Tourette Syndrome. First off, I would like to thank you so much for having me express my true thoughts and feelings of Tourette Syndrome. I would like to take this opportunity to share with not only you, but the NJCTS community and everyone about the New Jersey Walks For TS event coming up this Saturday, Nov. 19.

This walk all started when my cousin, Emily Carrara, 18, a senior at Mendham High School, saw the documentary I had made of myself living under the condition of TS that shows how I handle it in everyday life, how people treat me with TS and how I am different from everyone else.

VIDEO: TS Has TS: T.J. Stanley’s personal YouTube documentary about Tourette Syndrome

She was so inspired by me, and I had no idea what she had planned. She had thought to herself that she needed to get this disability out there. In other words, expressing it in such a big way that many people would know about it.

At first, I did not want to be a part of the walk last year because Tourette’s was something to me that I did not want certain people to know about. And this just had a negative feeling to me. But I realized the dedication she put into it. She really cares for this and those who have Tourette, and I find it very emotional to see how far she has come and how much awareness we have raised since last year.

It really speaks to me that one person can make such a big difference in not just my life, but for many lives. It is a great feeling, and I cannot even begin to tell you how excited I am for this walk. Please enjoy and feel free to comment — I am all ears.

More information about the second annual New Jersey Walks For TS event at Borough Park in Mendham, N.J., is available by visiting http://www.active.com/donate/MendhamWalksForTS. Come out to the walk on Saturday, Nov. 19, to meet T.J. and his cousin Emily, as well as participate and donate!