Neighbor News
15 year old talks about her experiences with Tourette's to Twn Bd
Greenburgh Mario Cuomo bridge lit up in honor of Tourettes awareness
Alex Cuttler is an amazing 15 year old with Tourette Syndrome. She is also an Ambassador for the Tourette Association and spoke before the Greenburgh Town Board on Wednesday evening (link to her presentation is below), Tonight, at 8:30 PM the Mario Cuomobridge will be lit up to celebrate Tourette Awareness --thanks to Alex Cuttler's efforts. Some of the members of the Tourette's committee will be gathering at Matthiessen Park, Village of Irvington, 1 Bridge Street Irvington beginning at 7:30 PM for this specialoccasion.
All the members of the Town Board were inspired by Alex Cuttler's presentation. With intelligent, effective young people like Alex Cuttler around - I'm confident that a cure to this illness will be found. Alex has a great future ahead of her and the livesof other people who have Tourette's will be better because of her involvement. Thank you, Alex!
PAUL FEINER
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I would like to thank the members of the board and the community for allowing me to speak and especially to Mr. Feiner for presenting this opportunity andfor all of his guidance.
My name is Alexandra Cuttler, I am in 9th grade, I live in Greenburgh, and I have Tourette Syndrome. Tourette Syndrome, or TS is a neurological disorderwhich causes motor and vocal tics. These are movements or sounds that your body makes that you can’t control.Imagine how hard it is to hold in a sneeze, that’s what it is like to hold back a tic.These tics wax and wane, meaning that they can get better or worse.I am 15 years old, and a year ago, I never would have imagined that I would be able to present to you. I would like to share my story with you.
I had severe tics which caused me to make a screeching sound every other second. My tic caused my ribcage to collapse causing breathing issues and my innerear crystals to be knocked loose, which caused balance issues and many ankle sprains. By finding the right combination of helpful therapies, medications and specialists, my symptoms have waned, and I am now in a better place.
I was diagnosed with Tourette Syndrome 3 years ago after visiting multiple specialists along with several misdiagnoses and being prescribed different medicationsthat had no impact on my symptoms. It wasn’t until one my doctors hosted a conference call with all of my medical providers, that I was guided to the right doctor for a diagnosis. I was thrilled to receive the diagnosis because now my problem had a name and I could find a way to help myself.
Under the ADA or the Americans with Disabilities Act, those with the diagnosis of Tourette are protected, and they have the same rights as any other person,though this doesn’t necessarily mean that they are treated with the same respect and courtesy as anybody else. There were times that I was bullied by random strangers on the street because they didn’t understand my tics. I remember these times because theyshow me just how far I’ve come. One of the most painful memories I have, took place when I was walking through a parking lot, and a woman who was talking on the phone called me a retard. Another time was when I was waiting in line at Panera, a woman camein and cut in front of me. I politely told her that I was in the line and that she had to go behind me. She started yelling and was upset that I was ticcing because she thought it was annoying. When my dad walked over to her and told her to back off, she gotextremely upset and threatened to call Social Services. As it turns out, she was a nurse, and yet she was uneducated about Tourette.
Today I am a Youth Ambassador for the Tourette Association of America, and my goal is to “foster awareness and social acceptance”. I want to help othersunderstand what TS is, and how it affects those who have it and those who are closest to them. Tourette affects 1 out of every 160 school aged children and 1 in 100 children are affected by a tic disorder.
Every year, May 15th to June 15th which is Tourette Awareness month provides a special opportunity for YAs like myself to raise awareness. Speaking to youtonight and gaining your support for the proclamation is one of the most important things I can do. If one person benefits from learning about Tourette, or is helped to find the right diagnosis, then we can consider our mission successful.
Receiving help and support is one of the most important things a family with a Tourette diagnosis can ask for, and that support comes to many in our areafrom the Tourette Association-New York Hudson Valley Chapter. Without them, my family and I would have been lost trying to navigate and adapt to our new normal. If not for the help and support teams I have found through them believe me, you wouldn’t know theperson standing in front of you.
At this point in time, there is no cure for Tourette, nor do we know what causes it, though we are trying to find out. However, we do know that those withTourette must live with it everyday of their lives. The one constant of Tourette is that it will always change. Thank you for listening and I’m happy to answer any questions you may have.
