Please support my “What Makes Us Tic” documentary project!

A lot of people either haven’t, or have only heard stereotyped references to it like “the swearing disorder.” Tourette Syndrome (TS) is actually a neurological disorder that is characterized by tics, which are uncontrollable movements or vocalizations.

TS is often judged and misunderstood because of the stigmas that have been created by the media and and a general lack of information about the disorder publicly. I intend to change that.

Through the power of film, What Makes Us Tic is an insightful documentary that aims to promote Tourette Syndrome awareness in a positive way, and give a fresh perspective of what living with this neurological disorder is really like.

It will also provide resources for individuals living with the disorder, as well as their parents, teachers, friends, co-workers, or anyone else who may be affected by their TS. Butultimately this film really is for anyone who wants to learn more about Tourette Syndrome!

My name is Bella Marangoni, and I am a Canadian filmmaker and a high school student. I was diagnosed with Tourette Syndrome seven years ago, and ever since my diagnosis, I have been driven to change the way that people think about Tourette Syndrome and mental health in general. Continue reading

10 Ways to Respect Children & Adults with Tourette Syndrome: No. 8

Hey everyone! I have decided to make a blog called “10 Ways to Respect Children and Adults With Tourette’s Syndrome”.

I feel like it’s not just important to tell others what shouldn’t be said, but that it’s also very important to follow this up with things that should be said and things that are helpful and supportive. This is important so that others without Tourette’s don’t shy away from talking about it all together, but instead know ways they can acknowledge Tourette’s by being helpful, supportive and accepting without being offensive.

So counting down toward No. 1, here is No. 8:

Caring enough to educate yourself about what Tourette’s Syndrome is.

From Jocelyn, a mother of a child living with Tourette’s Syndrome:

This is my 12-year-old son. He was diagnosed when he was in 3rd grade. We live in a small town in Texas. Hunter at that time had some very violent neck jerk tics. He was in a lot of pain. The doctors had him on some heavy-duty meds that made him so very tired. He slept during PE, recess and free periods at school. They allowed him to sleep in the nurse’s office. Hunter maintained his A-honor roll status throughout all of this. Our school administrators sought out help to understand Hunter and his new needs. They found speakers to come to our school and explain to Hunter’s classmates what Tourette Syndrome was and how it affected Hunter. They fully embraced Hunter.

I am forever grateful to our school for this. Our church raised money during VBS and gave it to the TSA. All VBS shirts had a teal ribbon printed on them. Our community brought awareness about TS, and awareness brings education, and education helps eliminate judgement. For this, I am grateful. It has made life so much easier for Hunter. We have had teachers attended workshops to understand kids with TS, ADHD, OCD and other co-morbids. They wanted to do this. They sought out these workshops.

Look for No. 7 tomorrow. And in case you missed the ones that came before, here’s a list:

Adult Onset Tourette Syndrome: How it started

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog.

I am a male, 21 years old, and this year, in 2013, I have developed what is in the process of being diagnosed at Tourette Syndrome (TS). I say in the process because the last medical professional I spoke to has explained to me that the condition cannot be diagnosed any earlier than 1 year after the initial onset, which for me will be early in February 2014.

However, what he did tell me after a 20-minute consultation is that he can see no other alternative diagnosis for the time being. I am awaiting an MRI scan, the results of which will be posted in a later entry, and for the time being that is the only name I can put to the condition in order to explain it to those closest to me.

So here is my story, in as many words as I can put it, to help anybody else in the world that is experiencing the same thing as I have been. And to those of you who are, come forward! Contact me, get in touch and tell me what’s going on. It’s all very new to me and I would love to be able to help and learn as much as I can. So, here’s the story… Continue reading

Rock group “The Lappes” to jam at NJ Walks for TS at Mendham on November 23

The Lappes (pronounced laps) will partner with with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for the second time this year by playing at the 4th annual NJ Walks for TS at Mendham, on Saturday, November 23, at Borough Park.

The Lappes, who played in April at NJ Walks for TS at Ramapo College, are looking forward to the upcoming event and will begin playing when registration and check-in opens at 9 a.m. The walk itself will commence at 10 a.m.

The Lappes are a four-piece, smooth rock fusion band that have taken their inspiration from classic rock and reggae icons such as The Allman Brothers Band and Toots and the Maytals, and fused it with contemporary sounds comparable to John Mayer and Phish. Band members include guitarist and vocalist Tom Wilkinson; guitarist, pianist and vocalist Will Miehe; bassist John Fraze and percussionist Shane Naidoo. 

Tourette Syndrome (TS) is an inherited, misdiagnosed, misunderstood neurological disorder characterized by involuntary movements and sounds called tics that affects 1 in 100 children and adults. Miehe – who was diagnosed with TS, Obsessive Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD) in the third grade – is excited to once again support New Jersey’s vast TS community.

“We had a great time playing at the last walk,” Miehe said. “TS is something that has affected me personally. Music has helped me cope with it, and I would like to share my outlet with others. We hope for a good turnout and anticipate an amazing time.”

The Lappes have performed in numerous iconic New Jersey locations, including The Court Tavern in New Brunswick and The Revel Casino in Atlantic City. Currently, The Lappes are cutting a demo EP that will be ready for release by the end of November 2013. For more information or to look up show dates, please visit The Lappes’ Facebook page You can also follow them on Twitter or Sound Cloud. 

NJ Walks for TS at Mendham will be a day of advocacy, awareness, acceptance and action geared toward raising funds to support educating students and teachers about TS across the Garden State through the School In-Service Program. All money raised will help fund the School In-Service Program, which costs NJCTS $71,000 per year.

More information about NJ Walks for TS is available by calling 908-575-7350 or by visiting the official registration and fundraising pages.

How others view my Tourette’s

The other day my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak, I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished.

Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette’s. I told her that she has my permission to educate all future guests about my Tourette’s and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette’s, which she found helpful as well.

She must have done a very good job educating our guest poet for today because I had no troubles at all. Professor B didn’t even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class.

I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high-pitched squeaks, a sound that sounds like “uh” “uh” or “ah” “ah”, and my tic where I say “woof”.

I really appreciated this positive experience with a new professor, who I had never even met before personally, and was very impressed with my professor’s ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling, though, when I’m having a lot of tics in a class or when I meet a new professor or adult that I haven’t previously talked with about my Tourette’s that the professor or adult has an automatic negative feeling toward me and my tics or is annoyed by them or doesn’t like me because of my Tourette’s. Continue reading