Tics and music

Hello everyone. I’ve never spoken of this on here because I had forgotten to. I figured out about a year ago that there are certain songs that make my tics go off. A song that my mom is in love with that she has on a CD makes me tic like crazy! I want to like the song, but it’s really hard to when I’m in constant pain.

Last night, I was listening to one of my favorite songs and my tics started going crazy and I felt like I was about to start seizing. I felt like my carotid artery was moving even though it can’t move. It was very disturbing and scary, but I figured that my exhaustion had something to do with it. It was still terrifying.

My mom just found some Zoloft that I can start getting back into my system. Does anyone else here start ticking out of nowhere while listening to a certain song? Hope you all have a pleasant day! 🙂

Tourette Syndrome documentary coming soon!

For months now, you’ve heard me and LoganK of Definite Possibilities talk about the Tourette Syndrome documentary that we’ve been working on. Well, it’s almost ready to be released. Check out our official trailer of the documentary!

And keep spreading TS awareness by sharing the picture below. You can either download it from here, or go to my Facebook page and share it with your friends and family!

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Support bill H.R. 146 today if you want more Tourette Syndrome research!

Hey guys, some of you might remember my past posts about recent Tourette Syndrome legislation. (If not, you can find them here, here and here.) There’s some exciting news regarding this bill: H.R. 3760, which was introduced in December 2011, has been reintroduced as bill H.R. 146 to the United States House of Representatives by New Jersey Congressman Albio Sires.

The bill, also known as the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2013, has the goal of establishing regional centers of excellence with the purpose of conducting research on the cause, diagnosis, early detection, prevention, control and treatment of TS and other disorders such as OCD, ADHD, anxiety and depression.

The original bill, which was introduced last year, gained co-sponsorships from 42 Congressmen — 9 of them from New Jersey.  It’s great that there have been so many co-sponsorships because it shows how much support the bill has been gaining around the country.  33 have been from other states!

Even though co-sponsorships are not necessary to pass a bill (votes are), they certainly go a long way in garnering support around congress so that more votes will be gained when the vote finally takes place.

To contact your Congressman, please check out the orange and black widget on the right side of the homepage of the Teens4TS blog.  If that doesn’t work for you, then visit this link to POPVOX and click on the orange oval labeled “SUPPORT” about halfway down the page.

From there, you can either write to your Congressman about your own personal feelings on the bill and why you think he should co-sponsor and support this bill in Congress, or you can just click “Next.”  Enter your e-mail to register your position, and there you go!  Your congressman now knows that there is support for a piece of legislation in the community he serves, and that you think that he should support it as well!

Thanks everyone!  Another blog post will be coming soon with my second semester update from the University of Pittsburgh!

NJCTS announces new Tourette Syndrome walk at Ramapo College!

RamapoArchThe New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is going to college! The New Jersey Walks for TS program has expanded beyond Mendham to the beautiful campus of Ramapo College in Northern New Jersey, with the first NJ Walks For TS at Ramapo College taking place on Sunday, April 14!

walk logoJoin us at Ramapo’s historic arch for this youth-initiated, youth-led, statewide fundraising and awareness effort. This event – the brainchild of Ramapo College senior AnnaKatharine Miehe, whose brother has Tourette Syndrome – aims to promote acceptance and understanding of TS and the 1 in 100 kids living with the misunderstood, misdiagnosed neurological disorder.

“Planning an event for the NJ Center for TS has been a wonderful opportunity and one that I will always cherish,” said Miehe, who has taken on this event as her senior project. “Having witnessed TS first hand, I understand the hardships people with TS go through on a daily basis and the importance of creating awareness and educating people on the disorder. I look forward to seeing people come together at NJ Walks for TS at Ramapo College in hopes of making a positive difference for those with TS.”

The walk will take place rain or shine April 14, with registration beginning at 1 p.m. and the walk commencing at 2 p.m. The cost is $10 for CURRENT Ramapo College students (MUST show college ID and/or have a valid Ramapo e-mail address; offer is not valid for Ramapo alumni or faculty) and $22.50 for the general public.

All proceeds from this event will support the statewide education outreach and peer advocacy efforts of NJCTS.

To sign up for the walk, please visit the NJ Walks For TS at Ramapo College registration page. To donate to the event, please visit the NJ Walks For TS at Ramapo College fundraising page. For more information about NJCTS or the NJ Walks For TS program, please visit www.njcts.org or call 908-575-7350.

Exercise for OCD and anxiety

Yesterday I started my exercise routine that is part of my treatment for my OCD and anxiety! 30 minutes of cardio a day! At least 3 days a week at the gym and the rest running outside/inside or 30 minutes of cardio in my room.

It felt really good to finally be getting started with it because truthfully I have been putting it off for a long time just because it’s an extra thing to have on my plate, and I’m already so busy in college!

Well, yesterday I put it on my plate with everything else, and I’m going to keep it up! It felt really good to get it done, and feel like I accomplished something that I know is good for me. I will let you guys know how it goes and how it affects my anxiety when I get in a more regular routine with it 🙂

New semester, new thoughts

Happy New Year everyone! I hope 2013 is treating people well so far!

In my last blog post, I wrote about the stress I was feeling about my upcoming performances and a presentation, which thankfully went pretty much as well as they could have done (hopefully – we haven’t got our grades back yet!).

Now we are starting this lovely new term with even more exams. Fun, right? So, while I’m on a train taking a break revision, I thought I would combine looking at the lovely snowy views with a new blog post with some new thoughts I have about this little ticcing world we are living in.

Last term, the presentation I had to do for my Special Educational Needs and Inclusion class was about the different models of disability. The first model was called the medical model (although this has also been referred to as the personal tragedy model).

The main focuses of this model is that the problem or disability was the individuals problem and control over this was given to professionals such as doctors to prescribe medicines and try and “fix” the individual. Action such as segregated schooling was put in place, with the hope that a different curriculum would be put in place to allow people with Special Educational Needs would be able to try and find a job once they reached the end of education. Continue reading

Live in the LA area? Need a TS speaker? I’m your guy!

Want to hear me speak at your school, camp or business? This is your chance!

In early April 2012, I was sought out and invited by the National Tourette Syndrome Association to participate in the exclusive 2012 Youth Ambassador Training Program held in Washington D.C. This Conference trained me to educate and advocate for myself and other teens across the United States. My goal is to educate people on Tourette Syndrome and self-improvement by providing a foundation of accurate information.

I shared my distinguished story how Tourette Syndrome affected me growing up, the accompanied bullying, the medication side effects, decreased self-esteem and associated isolation of knowing you’re different — when in reality, being different is more the norm and is perfectly fine. Continue reading

Talking about Tourette, school by school

Hey guys! If you have been following my posts, you know that I was diagnosed with tics when I was 7. Ever since then, I have been talking to my classes about it, even in college! I think it is so important to spread awareness of Tourette Syndrome.

Now, I know some of you might think that it is better to keep it in, or are afraid to tell others for being bullied or harassed, but you have to realize that you are only hurting yourself. I used to get so sick and tired of telling people about my tics person by person. It was humiliating and annoying, having people come up to me and say, why are you doing that? And having to explain it to every… single… person.

So my dad and I thought of telling my classmates about it the next year. It went fantastic. At first, he would only speak, because I was shy about it, but over time I began talking more and more about it. And now, in college, I do it all on my own!

Now, some of you might be wondering what we would do. Well, we would choose one day to go around to all of my classes and talk to the students. In grades 3-5, we would wait for each period and then go to the class. But in middle school we went around to my classes in my team (that was how we split up so many kids per grade — we were either in 6a, 6b, 6c, 6d, or 6e). And in high school my dad would just wait in the guidance office with one of the guidance counselors who we were close with.

When going into the classroom, I would introduce myself and then tell them that I had Tourette and say what it was. My dad would then go on to talk about what it is like and some famous people such as Mozart and Tim Howard who had/have Tourette. The kids all found it very interesting. At the end, we would take questions. In college, I just go up to my classes and tell them about what it is.

The best way, I have found out, is to be open about it. You want people to learn about it and enlighten them on this disability.

It was actually pretty cool because recently, a friend of mine who is still in high school had a young man go to his school and talk about Tourette, and when asked how many people knew what Tourette was, he was able to raise his hand because of me. The man that had spoken was Marc Elliot. He had brought me home a book that Marc Elliot had written on his journey living with Tourette.

So you can do it, too! Do you have any questions for me?

A tribute to Miss Iowa

Mariah collage rode achtergrondI actually wanted to write this blog yesterday, but because I wanted to go to bed early, I didn’t come to it. It’s now 6:40 a.m. and I’m wide awake. I’ll explain why.

A couple of months ago, I found out that Miss Iowa, Mariah Cary, has Tourette Syndrome. She had just been crowned and started her preparations for the Miss America Pageant.

What you have to know about Miss America is that it isn’t a regular beauty pageant, it’s a scholarship program — young women can earn money to go to college. This means that Miss America (and Miss Iowa) has to be more than just pretty. She has to be smart, she has to have something to say, she has to be confident, she has to be sweet and nice, she has to be talented for the talent portion of the competition and most of all, she has to be “real.” She has to be the person she really is and show it.

Miss America contestants often become lawyers and doctors. Besides all those qualities, she has to have her own “platform,” which is a charity that she made and she has to give it her all. In the case of Mariah, Miss Iowa, it wasn’t a tough choice — her platform is “Tourette Syndrome: The Involuntary Companion Syndrome.” And no, that’s not a coincidence that the last part spells “tics.” Continue reading

A newer, darker poem

It was a high counsel that I once heard given to a young person, “Always do what you are afraid to do.”

~ Ralph Waldo Emerson

Hello everyone. I’d like to share a poem that I recently wrote out of nowhere. I decided to put it up on my blog. It is very different from the other poetry that I have written.

Warning: It is a bit darker. It also has nothing to do with Tourette Syndrome. It is also about a subject that happens in real life. Reader’s discretion is advised. I’ve always wanted to say that!

“Lie To Me”

Go on, go on and lie to me

Let your words drip off of your lips like venom

Let your mouth say something while your mind says something else

Let your eyes stay on contact with mine, though they’re begging to fall

Go on, go on and hurt me

Say you love me when you’re also saying it to someone else

Say you are mine forever when forever won’t last that long

Say you won’t hurt me again when you’ll do it once more

Go on, go on and intimidate me

Show me your gentle touch, when you’ll hit me harder later on

Show me kindness now, when you’ll just insult me more tomorrow

Show me your light side, when it’s just covering the dark

Go on, go on and leave me

Leave me in the darkness that you left behind, though it will someday go away

Leave me with my spirit crushed, though it will one day be fully mended

Leave me to cry my heart out, when in fact I am relieved you are gone for good

Hope you all have a wonderful day! 🙂