Major motor tics

I had major motor tics yesterday. They were so bad that I had to leave class and stand next to the soda machine on the basement level because I knew I couldn’t let tics that big out in class without causing some serious alarm. I had to do my hitting tics where I hit my stomach, chest and legs as hard as I can while also doing full-body jerking tics.

And if that wasn’t enough, I went to the student health center to get some marks on my fingernail checked out and now they’re going to put me though all these blood tests and other various tests to make sure I don’t have an auto-immune disease.

I think they’re way overreacting, and so does my grandma who is a doctor as well. It’s probably nothing, but they still have to do the tests to be sure. Wish me luck with the tests and lets hope the lab results come out negative like my grandpa says they will.

How I fit into “Rare Disease Day”

Well being either yesterday or today is Rare Disease Day, I suppose I can share what I go through. Most of my disorders/disease are not rare themselves, but the extent/timing of them are rare.

I was diagnosed and had surgery for stage 4 endometriosis when I was 14 years old. My doctor said the extent of my endo she would’ve expected on a 60-year-old. Crazy, right? But get this … after I woke up from the surgery they asked how I felt, and I immediately said my leg my leg hurts really bad! Well, they took the blood pressure cuff off and my leg was the size of a basketball. No exaggeration. It was also STUCK in a tippie-toe position. First thought — blood clot.

I was rushed around from test to test, and after a long MRI they discovered it wasn’t a blood clot; rather, I lost ALL muscle fibers/tissue in my left leg and foot! I went through extensive physical therapy for about a year, and it took 6 months to just walk again.

I remember the first time my heel could touch the ground. I was diagnosed with a disease called RSD — Reflex Sympathetic Dystrophy. Not only did I have that, but permanent nerve damage that, to this day, I’m still actively struggling with both.

So yeah, that was rare. I also had a gallstone disease and had it removed at age 17 — not majorly rare, but not common either!

Now, the obvious — Tourette Syndrome. Continue reading

Tourette T-shirts

TSTShirtHi! My name is Megan. I’m a freshman at Highland Community College in Illinois studying cosmetology.  I have had Tourette Syndrome since 3rd grade,  so about 11 years. It has made me a stronger person, and I trust God more. It also has brought my family and I closer together.

I’m selling T-shirts for Tourette Awareness! They come in pink and grey, and they are $15 for S through XL and $17 for XXL thru 5X. Part of the proceeds will go toward the Tourette Syndrome Association to help others with Tourette and also research. Please let me know if your interested! 🙂

You can also find me on my Tourette Syndrome page on Facebook!

Stop staring at me … and your little dog, too!

The other day I was on my way to work. My tics have been bad lately because I’ve been stressed. So I’m sitting at the bench waiting for the bus, and I start ticcing. I have a tic when I shut my eyes very tight and make a face and I cannot open them until the compulsion to do so stops.

So that happened, and when I opened my eyes some lady walking her dog was stopped in front of me looking at me, and she awkwardly made small talk and walked away. Uh, hello? Who told you to stop and stare? People need to leave me alone. Haha.

Tourette Syndrome movies

I posted this on my A Little Bit Different: Tourette Syndrome page on Facebook, and I’d like to share it here, too. Here are some TS movie suggestions for kids to watch with their parents:

More TS/OCD movie suggestions to come! Feel free to add any suggestions that we forgot!

NJ Walks For TS at Ramapo College will be a rockin’ good time

RamapoArchWhen Ramapo College senior AnnaKatharine Miehe began planning the inaugural NJ Walks For TS at Ramapo College for her senior project, she knew some form of entertainment would be needed. It didn’t take her long to think of the perfect solution: Her 24-year-old brother, William, has Tourette Syndrome and plays in a reggae-and-blues band.

walk logoOnce AnnaKatharine told William that his life was the inspiration for choosing this event as her senior project, William and his yet-to-be-named three-piece band graciously offered to bring their style of music – which William describes as a cross between The Grateful Dead and The Band – to the walk, which will take place Sunday, April 14, beginning at Ramapo College’s iconic archway.

In fact, he can’t wait to jam for the crowd of students and members of the TS community who will be walking to benefit the statewide education outreach and peer advocacy programs of the New Jersey Center for Tourette Syndrome & Associate Disorders (NJCTS), which has been offering many avenues of support to the many Garden State families affected by TS for more than a decade. Continue reading

Vlog: My experience with Tourette Syndrome therapy

Hey guys! I’m sorry I’ve been slacking on blogging here! I wanted to let you guys know about my most recent vlog: My experience with Tourette therapy. I know a lot of people with Tourette Syndrome go through endless types of therapy, so I thought it would be useful.

I also wanted to remind you about my Tumblr called TS Toucan! You don’t need an account to enjoy the page, and you can submit memes, ask questions, tell stories, seek help and do anything else you can think of. I’m here to be a resource and a source of entertainment. 🙂 Please follow if you have a Tumblr, and just keep watch if you don’t! Thanks!

“Tourette Under Control” — I’m in the newspaper!

Hi everyone! I wanted to share with you an article in a Netherlands newspaper in which I appeared recently! It, of course, was written in Dutch, but I’ve translated it into English for you. Enjoy!

LauraBGilles de la Tourette is a tough disorder, especially for children. Usually, they get antipsychotics to control tics. However, with behavioral therapy, there are very good results as well. Due to this therapy, Laura Beljaars went from 300 to about 60 tics per 15 minutes.

“To some people, 60 tics per 15 minutes is quit much, but they’re not that noticeable. I tend to tense the muscles in my arms and legs and move my back”, the 24-year-old college student says.

For Laura, Tourette appeared when she was about 8years old.

“Back then I started to rotate my eyes, the tic I have the most. First they thought it was something psychological or a mild version of epilepsy. But when I was about eleven years old, a neurologist diagnosed me with Tourette Syndrome,” she said. Continue reading

Hi! First time posting

My name’s Lauren and this is my first post on here, so I’m not so sure what to write about. Since it was just Valentine’s Day, I’ll write about that. My boyfriend and I went out. I love when I go out with him because he really is the reason why I stay so calm in public.

Whenever I go out to eat, I get a lot more nervous about people noticing my tics — not to mention eating brings on a lot of them, which makes it hard to eat in general. We went out tonight, and it was actually a really good night. He held my hand because I kept hitting the table.

It’s just a nice feeling to know I have someone there to help me when I need it, even if it’s the small things. Hope you all had a happy Valentine’s Day!

Athens conference meeting was terrific…bring it on!

On Tuesday I had my meeting with two of the therapists that organize the conference in Athens that I wrote about on Monday. And it went AMAZINGLY!!! Really, beforehand, I thought I had about 15 minutes to speak and now it’s up to 20 minutes about “TS is so much more than tics” and co-morbidity and 10 minutes about a subject that goes very near to my heart: positivity.

I want to speak about how you can have a good and happy life, even when you have Tourette Syndrome because a lot of kids, in my experience, think their life is over after the get the diagnosis. I know that’s not the case and I want the therapists and doctors that actually diagnose those kids telling them that they still can do anything they want. They might have to fight a little harder, but life doesn’t stop after the diagnosis. So you shouldn’t let TS stop you from doing and becoming anything you want.

I really think it’s their job, the job of the people that diagnose, to speak about that and let kids know that there is so much to achieve when you have Tourette. We, as associations or activists can say that, but we don’t reach all patients. The people that diagnose do.

That’s the part of the conference I look forward to the most. And the nice thing about it is that it’ll be the closing lecture of the first day, so people can think about that going back to their hotel rooms. They thought about it to make it the final speech of the conference, but that’s not possible because Mary Robertson will do that speech. But, hey, sounds cool right, I’ll close the first day, she’ll close the second day!

And that’s not even all! Continue reading