Blogs like this DO help the rest of the world learn about TS

Posted on May 9, 2012 by AislingL

I am from Derby in the UK and got diagnosed with Tourette Syndrome just over a year ago. I am now 19 and have been looking for ways to express myself and try to come to terms with TS and how it affects me. Since I found this blog and read a load of the entries, I have been inspired by it and would like to contribute my own experiences.

I still feel like a newbie to TS. I didn’t start to have tics until shortly after my 17th birthday and get a diagnosis until after my 18th birthday, so it’s been just over three years – but it doesn’t seem it!

Since my tics started, I have been taken on an eye-opening journey of different neurological conditions and how little the general public seem to know about them. Initially, I had decided to isolate myself from any information on tic disorders for the fear of mis-self-diagnosis.

I was aware of TS, as I had always had an active interest in different conditions, but although I knew I had similar symptoms to those with TS, I refused to believe I could just spontaneously wake up with it one day after just starting my A-Levels.

Obviously, being told I had TS was a shock. I was convinced I had a habit tic and was just having trouble breaking the habit! Obviously, as different tics developed randomly, this seemed less and less likely to be a habit tic, but I suppose I could still hope that it was just a habit and like I’d stopped biting my nails (briefly…I’ve recently started again!) I’d stop these pesky tics. Continue reading →

My boyfriend has Tourette Syndrome

Posted on April 20, 2012 by Leanne

Up until about four months ago, I knew almost nothing about Tourette Syndrome. The extent of my knowledge was “Tourette’s Guy” and that one South Park episode, which — to be honest with you — I thought were stupid even before I got educated. But in December of this past year, two very important things happened.

First, I found out that a 4-year-old girl that I work with was working on being diagnosed with Tourette’s. Second, I met Keith — my boyfriend.

Since then I have learned a ton about Tourette Syndrome and the disorders that surround it. Keith’s openness and willingness to offer explanations has helped me not only to be a good girlfriend to him, but also to be a better teacher to the kids at my preschool.

Over the past few months I have developed a passion for spreading awareness to people who are like I was. My hope is to help each and every person with Tourette Syndrome find acceptance and understanding in society.

I look forward to blogging here, and please come say hi over at my Facebook page, too!

Pediatric residents learn more about Tourette Syndrome from teens

Posted on April 13, 2012 by Teens4TS

Drew Friedrich and Sarah Ethridge had a lot to say at the New Jersey Center for Tourette Syndrome’s patient-centered training April 9 at Goryeb Children’s Hospital in Morristown, N.J. And the pediatric residents to whom they spoke absorbed every word they spoke.

The packed room of pediatric residents learned more about Tourette Syndrome in 1 hour than they did during their entire time in medical school or during on-the-job experience. NJCTS’ patient-centered trainings are, simply put, THAT effective. But don’t take our word for it. Listen to what the chief pediatric resident had to say:

“I didn’t realize that you could actually suppress the impulses of the tics. That was interesting information for me,” said Angela Mukherjee, the chief pediatric resident at Goryeb. “I think we got a really good insight into how Tourette affects children on a daily basis and the struggles that they encounter. In the textbook, we learned what Tourette is and how to treat it, but it’s different in person. It was great. It was really educational.”

NJCTS’ story about the training can be read by clicking here, but we at Teens4TS would like to provide you with some exclusive behind-the-scenes quotes and information! Continue reading →

Taking part in a Tourette Syndrome research study

Posted on March 26, 2012 by RuthieP

OK, I am now ready to start blogging again! I took a little break from blogging this past week because my parents were out of town, my dog was sick and I was on spring break, so there was really not much going on to blog about.

But I want to talk about my experience when I went to interview the Tourette Syndrome experts for my documentary. A Doctoral Fellow who both has Tourette and researches it mentioned to me that she was going to be starting a research study for people with Tourette ages 18 and older.

She asked me if I was interested and if I would be willing to be a part of the research study when it was all ready, and of course I said yes! So last week she got back to me and told me that the study was all ready to go, and I let her know that I was still interested. So I am all signed up to be part of the study!

There are two parts of the study, the behavioral testing and the MRI scan. I am set up to do the behavioral testing part on April 4 and the MRI scan on April 7. During the behavioral testing part, there will be pencil and paper tests, verbal response tests and questionnaires. I am a bit worried for the MRI scan because I am not sure how long I will be able to stay still. I’m sure they will be understanding, though, considering this is a Tourette study! Continue reading →

Tourette’s gets tougher when even teachers poke fun

Posted on January 23, 2012 by RowenaM

My name is Rowena, and I was diagnosed with Tourette Syndrome at 11 years old. I was in sixth grade when it happened. Before 11 years old, I was making weird movements and sounds, such as tapping and humming.

I went, and am still going to, Rothman Center in St. Petersburg. The first appointment took six hours until we were finally done. My doctors are amazing and have helped me so much the past five years. I went to West Hernando Christian school when I was diagnosed.

My sixth-grade teacher was very judgmental and disrespectful toward me. I didn’t know why she was acting this way. It was as if she was a completely different person. But one day she asked my mom if they could talk privately.

After they talked, my mom came out of the classroom and rushed me to the car. I asked her what happened. She told me that my teacher thought that I was lying about my Tourette’s. Of course, mom was very angry, and so was I. Continue reading →