By now, many of you likely have heard about the case of the 12 LeRoy, N.Y., female students who developed Tourette Syndrome-like symptoms and tics in December. Various news reports, medical claims and reports by experts since have been all over the Internet.
There are many different theories out there about what exactly contributed to the onset of these TS-like symptoms, but according to Wikipedia, the girls’ school was tested for toxins and all other factors for their symptoms were ruled out, the girls were diagnosed with a “mass psychogenic illness” resulting from stress.
What we at TSParentsOnline want to know is this: What do you think of this entire case? Does it help or hurt Tourette Syndrome advocacy? If you or someone you know has TS, how does this entire case make you feel? Do you agree with the ultimate diagnosis of these girls? What is your opinion about some of the things said by the doctors and experts in this case?
Many people from all over the country already have weighed in with their thoughts, which you can check out after the “continue reading” jump. We would love to hear your opinion, too, and you can let your voice be known about this very important, trending topic in one or more of several ways: Continue reading
This past week, our family, friends and community were treated to an amazing display of courage, power and advocacy. Our 12-year-old daughter, Tess, who was diagnosed with Tourette Syndrome when she was 5, gave a presentation entitled “My Life With Tourette Syndrome.” The talk took place at the Religious School of our synagogue (Congregation Kehilat Shalom in Belle Mead, N.J.) and it was attended by more than 90 people.
As part of her Bat Mitzvah community service project (to support the New Jersey Center for Tourette Syndrome), I was proud that she even wanted to do the talk. I thought that no matter what she did, the room would be filled with love and support for her (plus a little education for anyone who didn’t know about TS), and that she would feel very proud of herself for having done something that would scare most adults! I thought that was exciting enough.
While I knew that she would do a great job, I was unprepared for how spectacularly she presented her material. She wrote a speech with honesty, humor and education. She practiced it faithfully, took some suggestions from us and from materials provided by NJCTS, and ultimately came up with a “multimedia” presentation.
In addition to her speech, she chose to show a clip from the HBO documentary “I Have Tourette’s, But Tourette’s Doesn’t Have Me”; to show pictures from our raffle trip to meet Tim Howard; to have the crowd do an activity where they were given “tics” to deal with; and to have a display table of T-shirts, hats and pamphlets from NJCTS, as well as books and DVDs relating to TS and OCD. Continue reading
A couple of weeks ago, we talked about how much we enjoyed ourselves during our trip to England to meet Tim Howard after winning the New Jersey Center for Tourette Syndrome Team Up With Tim Howard raffle.
Well, apparently Tim enjoyed hanging out with us as much as we did with him. Here is NJCTS’ story about our experience, featuring some nice words from Tim himself. Thank you so much, Tim, for making our trip an experience of a lifetime. Our girls, Tess and Paige, will never forget it!
Over the past two weeks, the Tourette Syndrome Foundation of Canada has been doing a Top 10 New Year’s Resolution lists of ways their communities north of the border can help spread advocacy, awareness and education about TS.
We at TSParentsOnline love this idea and want to share all 10 of these blog entries with you. Please note that many of the ideas listed in these entries can be applied to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), which birthed this blog and helps tens of thousands of people with Tourette in New Jersey every year.
So sit back, relax, enjoy these good reads, and then perhaps think about how you might help NJCTS and the rest of the TS community today, such as taking part in Tourette Syndrome Awareness Day! You’ll be glad you did!
- Show Your Support To The World
- Join Others Online
- Become A Member
- Advocate For People With TS
- Participate In Events
- Educate Yourself
- Educate Others
- Say What’s On Your Mind
For more on Tourette Syndrome resolutions, please check our TSParentsOnline’s post about New Year’s Resolutions. We still would love to hear from you!
When my son was diagnosed with mild Tourette’s five years ago, one of the first things I did was concentrate on reducing tics. I didn’t want to travel down Medication Highway right away, so I set my sites on some more natural alternatives. The first thing I concentrated on was food.
It made sense to me, after a lot of reading, that what goes into the body comes out of the body. With the encouragment of ACN and a great book by Sheila Rogers, I began eliminating anything artificial from Stink’s diet. Out with the food dye and preservatives.
I took him to a holistic doctor and had him tested for food allergies. Out with the dairy and the gluten! With a new diet in place, this meant in with the fruit, veggies and healthy proteins.
While Stink’s tics were not eliminated 100 percent, they did subside quite a bit. Other issues began popping up, though, most significantly his inattention. It wasn’t until recently that I began wondering if the “healthy” fruits and veggies I was serving was actually contributing to his ADD. Continue reading
Here are today’s Tourette Syndrome-related links. Usually, they come from all over the Internet, but today they are related to the many important events the New Jersey Center for Tourette Syndrome has coming up in which you might want to participate.
Each link features event information, registration forms and links to other participatory pages, where applicable. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!
Bullies Back Down When We Stand Up Poster Contest
2012 Dare To Dream Student Leadership Conference
NJCTS’ Tourette Syndrome Awareness Day with the Somerset Patriots
The National Institute of Mental Health NJCTS Genetics Sharing Program
Social skills and family support groups at Rutgers University
Wednesday Webinar on emotion regulation