Marc Elliot claiming to be cured of his TS? What do you guys think?

Sorry for the long post guys, but I think this is important! Please comment! I really want your opinions on this!

What do you guys think of this? Marc Elliot claims that he has been cured of his TS by taking human potential courses. When this post was posted on this site and on the Teens4TS Facebook page, people started commenting and were pretty outraged by this claim.

One person said, “Just because his tics are minimized does not mean he does not have TS. If he is saying he did not have disorders, then he had a tic disorder, NOT Tourette. Everything waxes/wanes with TS is neurological and there is no cure… It is wrong for him to claim he cured himself like an elixir considering the facts of what Tourette is!”

Another person said, “Anyone educated on Tourette can blow holes into his claim. So many years of bringing awareness and ignorance like this out there that hurts it!”

And yet another person said, ” There are so many vague points in his letter that need to be examined. Has anyone ever gone for a treatment from a program that does not have a web site?… Have you ever participated in a program where they won’t tell you the names of the instructors or their credentials?… Some people with TS are so vulnerable and can be played upon so easily. Use logic and ask questions and please do not get sucked in by the promise of something that seems too good to be true.”

And yet even another person said, ” I’d much rather focus on all the great things people impacted by TS are doing rather than having to protect our kids from the insanity of a program that should never have even made it to the site given the smoke and mirrors and unanswered questions. I agree that people should make their own decisions, but, there are some things that are so off track that it creates a danger for our kids”

To see the whole converstation and to chime in on it with your opinions if you want to you can go here. PLEASE comment on this, either here or on the Facebook page. This is really important, and if we’re all to get to the bottom of this, we all need to participate. Thank you!

A helpful list of Tourette Syndrome books, videos and links

Here are a list of book titles and websites/films about Tourette Syndrome that I thought you all might find useful! 🙂

Books

  • “I Can’t Stop” — Holly Niner A Story about TS (kids book)
  • “Adam and the Magic Marble” — Adam Buehrens
  • “Hi, I’m Adam: A Child’s story of Tourette Syndrome” — Adam Buehrens (kids)
  • “Tic Talk: Living with Tourette Syndrome, A 9-year-old boy’s story in his own words” — Dylan Peters (kids)
  • “Teaching the Tiger A Handbook for Individuals Involved in the Education of Students with Attention Deficit Disorders, Tourette Syndrome or Obsessive-Compulsive Disorder [Plastic Comb]” — Marilyn P., Ph.D. Dornbush (Author), Sheryl K. Pruitt (Author)
  • “Front of the Class: How Tourette Syndrome Made Me the Teacher I never Had” — Brad Cohen with Lisa Wysocky
  • “Twitch and Shout: A Touretter’s Tale” — Lowell Handler
  • “Against Medical Advice” — James Patterson and Hal Friedman
  • “Children with Tourette Syndrome” — a parent’s guide, edited by Tracy Lynne Marsh. 2nd edition or newer
  • “Challenging Kids, Challenged Teachers” — Leslie E. Packer, Ph.D. & Sheryl Pruitt, M.Ed., ET/P for TS Plus
  • “The Explosive Child” — Ross W. Greene, Ph.D.
  • “Don’t Think About Monkeys” — edited by Adam Ward Seligman & John S. Hilkevich
  • “What to do when your temper flares” — a workbook by Dawn Huebner, Ph.D.
  • “What to do when your brain gets stuck” — a workbook by Dawn Huebner, Ph. D.
  • “Coping with Tourette Syndrome” — a workbook by Sandra Buffolano, MA
  • “House Rules” — Jodi Picoult (Asperger’s)
  • “Healing the New Childhood Epedemics” — Kenneth Bock and Cameron Stauth Continue reading

WE NEED MORE AWARENESS!

10022_362589630516363_1602150444_nI wish more people would take the time to spread pictures of awareness for Tourette. People don’t understand how ridiculed we are. Did you know more kids commit suicide that have Tourette than those who are gay? Probably not, because you never hear about that.

I believe love is love and think everyone should have rights, but I also have strong feelings of my own seeing so many friends posting these equal signs knowing that more than half of them wouldn’t do the same for TS. Not that it’s something to fight over, I just wish we had more love an acceptance than hatred and ignorance.

You don’t know until it’s you… I’ve had multiple people go in public with me and afterward say, “Wow, I had no idea people were so rude.” Think about it…

New National Youth Ambassadors are unveiled!

261224_10151307763237676_876241924_nThe following is from the National Tourette Syndrome Association. Teens4TS is extremely proud of each and every one of the 46 teens who last week became Youth Ambassadors!

The national Tourette Syndrome Association’s 2013 Trip to the Hill brought 46 newly trained Youth Ambassadors and parents (a total of 100 participants) to Washington DC from March 19 to 21 for three days of training and TSA’s Trip to the Hill.

The Trip to the Hill presents an opportunity for Youth Ambassadors to speak publicly about Tourette Syndrome and advocate not just for themselves, but for all individuals living with TS.

On Wednesday night, at a dinner to celebrate the end of the 2-day training sessions, Judit Ungar, outgoing President of national TSA, and founder of TSA’s Public Policy initiative, received TSA’s Public Policy Award.

On Thursday morning, March 21, at a kick-off breakfast, Peter Hollenbeck, former Co-Chair of the TSA’s Scientific Advisory Board and Professor and Associate Head of Biological Sciences and Purdue University shared his personal story about TS and gave uplifting advice to the Youth Ambassadors.

Then, at the Capitol, five members of Congress, the Youth Ambassador and family members, as well as congressional staff members participated in a Congressional Briefing Luncheon, an information session to raise awareness about TS. Continue reading

Getting involved will change your life

I was recently asked to talk about a person who I admire who has Tourette Syndrome. What better way to answer this question than with a blog post. So, who do I admire? Jennifer Zwilling — the creator of the National Youth Ambassador program.

From the time I was diagnosed with TS at age 6 until my freshman year in high school, I devoted all my energy to hiding my tics when I was in school. I had seen my first-grade class relentlessly tease Eric, a boy who had uncontrollable outbursts, and I was definately not going to be a victim like him.

I was even afraid and embarrassed to tell my friends about my disorder. I was always exhausted from working so hard to hide who I really was.  Many years of cognitive therapy and medications allowed me to have some control over my tics, but it was not easy.

The big change came in high school, when as a freshman I came clean. I realized that if I wanted to focus on academics, I would have to stop devoting so much energy to hiding my tics.

During a discussion with my doctor about my ticks, she compared TS with diabetes and peanut allergies. She stated that people with diabetes don’t hide that they get insulin shots and students with peanut allergies don’t hide that they sit at a peanut-free table at lunch.

Similarly, I should not hide who I am simply because I have TS and tic. I started to realize that my disorder was not something that made me “bad” and it was not my fault that I suffered from TS. My doctor suggested that I look at some TS websites for more information. Continue reading

Things are starting to come together!

Finally, my week of interning is behind me, and now it’s back to two days a week, which I can handle. I have to say, last week reminded me about how bad Tourette can be and how it still makes me cry, sometimes. A week in front of the class is just too hard for me, I simply cannot do that. Luckily, I don’t have many of these weeks left, until I graduate in June 2014.

This weekend I wanted to remind myself of what my message about Tourette is and why I want to be a teacher, so I watched “Front of the Class,” again. It’s the perfect movie for me, because it combines my two passions: teaching and Tourette. (I don’t know whether you can call Tourette a passion, but it’s at least something I’m passionate about.)

Now that last week is done, I can go back to preparing for Athens. It took me two days last weekend, but in the end, I was able to book the hotel I wanted at the price I wanted, so I’m very glad that’s fixed!

I still have some doubt about what I’m gonna say and I’m scared that I’m going to forget something and blow the perhaps only chance I have, but on Friday I spoke with a friend about my speeches and she asked me what I wanted to say. I gave her a short summary and she was immediately really impressed.

That’s when I realized that I’ve thought so much about it, that it doesn’t impress me anymore. But it impressed my friends, and they’ve heard it before (just not that much) and they were impressed, so I’m confident what I want to say is the right thing. Continue reading

Has anyone ever heard of Synesthesia?

479820_360872564032109_1224952134_nHey guys! Do any of you have a bit of Synesthesia? I believe that I have very mild case. For those of you who don’t know, Synestesia is the crossing of senses. So for me, certain numbers “mean” a color to me and certain letters “mean” a color to me. For example, when I think of the number 3, it is a yellow number.

Also, I picture months of the year, days of the week, and multiplication tables as having a certain place in an imaginary kind of space, facing certain directions. Kind of strange, huh?

The above picture is as close as I can get to a representation of how I perceive the numbers 1-10. I don’t actually visually see the colors when I look at numbers of letters (because I think I just have a mild form), but I do perceive that the numbers and letters “should be” or “seem like” they are that color in my mind.

Kind of like how you might perceive a friend to be bossy. When you look at them, in your mind you perceive them as a bossy person, but you don’t literally or visually see the word bossy written on their forehead. Make since? Anyone else experience anything like this?

For some people, certain sounds “mean” colors, tastes or textures, or certain words “mean” tastes, sounds or textures. For some people, numbers and letters can even have personalities!

Youth Ambassadors honored by national TS association, part 2

The National Youth Ambassador program put on by the Tourette Syndrome Association trains and equips teenagers to speak to people of all ages — particularly their peers — about the neurological disorder. In its Spring 2013 newsletter, the TSA acknowledged a slew of Youth Ambassadors (YA) from all over the country. Click here for the spotlight writeup. Here are the other writeups:

Justin Bachman of Ohio made the keynote speech at the Diversity Center of Northeast Ohio High School Retreat. One hundred students and school administrators from 8 schools attended this event at Camp Wise in Chardon. Justin also spoke before an audience of 350 5th-8th-graders and school administrators at the Gilman School in Baltimore, before 152 4th-8th-graders at the St. Anselm School in Chesterland and to 30 teachers at John Carroll University in Cleveland.

Adam Lutsky of Southern California made a presentation before 22 Boy Scouts working toward their disability badge and 13 adults. The scouts took careful notes so they could then make their own presentation to younger Cub Scouts. Adam also spoke to 130 6th-graders and 13 adults at an elementary school in Corona, 35 7th-12th-graders at the Congregation B’nai Israel Shabbat Club in Tustin and to 300 students and faculty at Eisenhower Elementary School in Corona.

Shawn O’Hare of Northern California spoke to 300 band students and parents on the football field at Amador in Pleasant. He then spoke to his high school classmates and the school’s staff on Amador TV — an audience of 2,500.

McClain Mercer of Georgia established a Tourette Awareness Club at Grovetown High School with 27 student members. They discussed fundraising to send kids with TS from Georgia to Camp Twitch and Shout. Continue reading

Extreme Tourette: Video of a bad tic attack

I never really watch the videos my parents tape of my tic episodes/attacks or whatever, I just upload them. I was watching this one with my mom because we needed to find some to send to Dr. Mogilner.. I can’t believe these were going on every night. Sometimes I don’t even know what tics I’m doing and when. Weird to watch really. Just figured I’d share.

Youth Ambassadors honored by national TS association, part 1

The National Youth Ambassador program put on by the Tourette Syndrome Association trains and equips teenagers to speak to people of all ages — particularly their peers — about the neurological disorder. In its Spring 2013 newsletter, the TSA acknowledged a slew of Youth Ambassadors (YA) from all over the country. Here is the spotlight writeup:

Seventeen-year-old Mercedes Allred does not have Tourette Syndrome, but on behalf of her sister Tempest, she has made TS her cause. In addition to her TSA YA presentations, Mercedes is a champion in the competitive world of speech and debate. Her favorite event is oratory — 7-to-10-minute speeches written, memorized and delivered by the competitor.

“My entire speech is about Tourette Syndrome. I go over what TS is, explaining what a tic is, different kinds of tics, and that environmental factors affect it. And then I talk about Tempest’s experiences and why it is important for people to know about TS,” Mercedes explained.

She views the speeches she gives about TS as opportunities to spread awareness, noting that with three rounds of competition and five competitors and a judge, she is reaching about 30 people each time she competes.

Mercedes is a senior at American Leadership Academy, where her favorite subjects are English and Graphic Design. She would like to become a teacher and debate coach. She is very enthusiastic about public speaking and thinks it is “a fantastic activity for everyone, especially people with TS. It really helps confidence and poise.”

In May, Mercedes will compete in the National Individual Tournament of Champions in Texas: “I’m super excited about having the opportunity to spread awareness to so many people.”

Allred, of Utah, recently made a presentation to 75 elementary school teachers at Webster Academy in Orem and 17 elementary school teachers at American Leadership Academy in Spanish Fork. Mercedes also spoke before two groups of students, 28 fourth-graders and 15 students in a health class — both at American Leadership Academy.

Read more about the Youth Ambassador program at work in New Jersey as part of the New Jersey Center for Tourette Syndrome & Associated Disorders’ education outreach and peer advocacy efforts.