Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

TS Success Stories: Kristin, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Kristin’s Tourette Syndrome Story

Q: What is your name & how old are you?
A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.

Q: How long have you had Tourettes?
A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.

Q: What kind of tics do you have?
A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!

Q: Do you have any associated conditions?
A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!

Q: What’s life like living with TS?
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It’s good to be back at school amongst such supportive people!

Yesterday, I moved into the dorms at school. My anxiety was really high during the moving process, and it felt really overwhelming to have to move all my things into my room, unpack and deal with everyone around me. After everything got moved in and I got settled, things got a lot better. I got to be with my two really good friends and vent to them about my anxiety for a bit. Being able to talk about my anxiety with them instead of holding it inside seemed to really help.

Also after knowing them both for two full years, going on a third, they are very used to my tics and are very comfortable talking about TS. For a while we didn’t talk about my tics because they were afraid they were going to offend me or hurt my feelings. Now knowing me so well, they know that that’s not the case. They are able to freely joke about my tics with me, and I made sure to tell them last night that I like when they do that and that it makes me feel more comfortable.

My F-word tic was pretty active yesterday, and since it’s so new they’re still getting used to that one. But they’re doing a great job making me feel comfortable with it and letting me know it’s no big deal.

I also told them some camp stories from my amazing second year as a counselor at Camp Twitch and Shout, and I have so much more to tell them! I start classes on Monday and am looking forward to it!

TS Success Stories: Seth, 29

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Seth’s Story 

Q: What is your name and how old are you?
A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome?
A: I’ve had Tourette’s since I was 7 years old.

Q: What kinds of tics do you have?
A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?
A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?
A: While working I usually don’t have an issue with my Tourette’s. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I’ve broken furniture in the past. I’ve learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It’s much safer for me as I don’t hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,
especially if it’s something you can’t control.

Q: What is the hardest thing about living with Tourette Syndrome?
A: For me it’s watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it’s the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?
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TS Success Stories: Martyna, 15

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Martyna’s Story

Q: What is your name and how old are you?
A: My name is Martyna, I’m 15 years old, and I’m from Poland.

Q: How long have you had Tourette Syndrome?
A: I was diagnosed with Tourette’s about 2 years ago.

Q: What kinds of tics do you have?
A: When I was younger I had a lot of different tics like eye rolling but they weren’t very noticeable. When I was 13 I started to shout and I didn’t know what was happening to me. My parents were really sad and angry. Now, I’m taking a medicine that really works for me so my tics are a lot better.

Q: What is life like for you living with Tourette Syndrome?
A: Life with Tourette’s is really hard. When I first started to have tics it is very difficult, but it got easier as time went on.

Q: What’s the hardest part about having Tourette’s?
A: I think the hardest part about having Tourette’s is meeting new people. They don’t know why I’m shouting and sometimes they are scared. It’s hard going to the movies and my main problem is going to church! I can’t stop ticcing in church.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Don’t worry, just be happy! You must live the life! Dont worry about people who don’t understand. Think positively!

Q: What do you think other people should know about Tourette Syndrome?
A: Other people should know that our tics aren’t our fault and they should accept us.

Q: What are your strengths and what do you like to do?
A: I really love reading books! My favorite genre is fantasy. I am interested in learning more of the English language and next year I’m going to be in a special English competition.

Q: What are your goals in life?
A: When I grow up I want to be a doctor and help polish people who have Tourette Syndrome. I will be a doctor with my own experience with having Tourette’s. I would like to say you more but I can’t find enough words in English.