Thursday, September 4, 2014

Funny TS moment of the Day

Today I was doing homework in my suite when my suite mate and good friend came back to the room. When he walked in he said "I could hear your tics from the hall! Guess I know your home!" LOL funny Tourette's moment of the day :)

Sunday, August 24, 2014

Junior Year!

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!

Wednesday, August 20, 2014

Meeting with My Professors about Tourette's

As of today, i've met with two of my professors this semester about my Tourette's. For those of you who are new to my page, every semester I meet with each of my professors to let them know about Tourette's, what it is, and how it effects me in class. Like always, the two professors i've met with so far have been great about it! One professor knew very little about Tourette's and the other knew a great deal and had had previous students with TS. Regardless of their background knowledge, both were incredibly understanding and kind. My professor that I met with today said that he had a student whose Tourette's was prominent before and the students just become very used to it. I've yet to have a professor who was anything but understanding

In these meetings I vary what I tell the professor based on the class size and set up, but I do make sure to tell all my professors these four things which I think are important for them to know:

1. Tics change from day to day, so one day my tics may be very prominent and the next day they might not be.
2. I can get new tics at any time, and it can be very unpredictable.
3. My vocal tics can be noises or words. They are random and have nothing to do with what is being said or what is going on in class.
4. If I ever step out of the room or have to use other accommodations that require me to miss class, it's because I have to, not because I want to. I don't like missing any class or material and I really care about and am looking forward to this class. I rarely use these accommodations, but on occasion I have to because my tics just make it difficult for me to stay in the classroom.

Kristin's Tourette Syndrome Story

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?
A: Life with TS has given me a new perspective on life. I am also on Youtube (my username is K972411) and there you can find a more detailed list of what has been going on the past few years since my TS got more severe. Without medication, I am unable to go to school/work; however, with medication, I am able to function like a pretty "normal" kid. Sometimes my tics still get bad and it can get in the way of being able to do my school work or play sports.

Q: What advice can you give others that are newly diagnosed?
Some advice I would give people who are newly diagnosed with TS is to stay positive and reach out to other people who also have Tourette's. You can do this on Facebook, youtube, or in person. Sometimes it helps to be able to ask questions to people who can actually relate. The other piece of advice I have is to not be afraid to let people know you have Tourette syndrome. You are who you are!!

Q: Whats the hardest thing about having TS?
A: The hardest thing about living with Tourette syndrome is that my body and brain are constantly exhausted from ticcing and the associated conditions. It is important to look at the positives, and realize what good things TS has brought into your life!

Q: What do you think others should know about TS?
A: Other people need to realize that we are not in control of our tics, and pointing them out or telling us to stop makes our tics worse. Understand that we don't like it any more than you do!!!

Q: What are your strengths and what do you like to do?
A: My strengths are school work. I actually partially give my OCD credit for this lol. I always try very hard in school to get all As. Outside of school, I like to work (I am a waitress), play sports, and hang out with my friends!

Q: What are your dreams & goals in life?
A: My goals in life are to go to college, study science or math (chemistry?), and possibly get a job in the pharmaceutical industry.

Steff's Tourette Syndrome Story

Steff's Tourette Syndrome Story





Q:What is your name & how old are you?
A: Steff & 23.

Q: How long have you had Tourettes?
A:I was diagnosed when I was 7.

Q: What kind of tics do you have?
A: Most facial, some arm spasm like twitches .. when I type, like now...my hands twitch alot. When there is something wrong(toothache, knee pain, headache) my tics localize to that area. I've had a wink that I have had since I was diagnosed. That gets interesting sometimes.

Q: Do you have any associated conditions?
A: I have OCD, am mildly BiPolar, & have anxiety.

Q:What's life like living with TS?
A: It's life. I take each day for what it is & hope tomorow will be good too. My tics are worse at night, or when I am stressing and my anxiety picks up, other than that, I usually get by okay.

Q: What advice can you give others that are newly diagnosed?
A: Live your life! I am a regular person, I just move around more than others. I hate people on any TS site that hate the world. Yes, its rough, but it's amazing also.

Q: Whats the hardest thing about having TS?
A: Meeting new people or getting a new job. People are so quick to judge. Seeing other people get down on themselves because of the condition.

Q:What do you think others should know about TS?
A:I am just like you, I just move more. You cant catch it, I cant help it, get over it.

Q: What are your strengths and what do you like to do?
A: I clean, alot. I also like to exercise. Not just run, but actually exercise. I also do alot with my dogs.

Q:What are your dreams & goals in life?
A: To help others with TS. To have a lovely family, with kids. They may or may not be born with Tourettes. But we will take that journey in stride when it comes.

Monday, August 18, 2014

Seth's Story


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?
A: The way we perceive things aren't always the way they are. If we think a kid is good we'll notice all the good things they do, if we think they're bad we'll notice all the bad things they do. By choosing to see someone with Tourette's as a person and not some strange thing or poor soul suffering with a disorder, you will see all the amazing qualities that person has (and hopefully they will too).

Q: What are your strengths and what do you like to do?
A: I love working with kids and helping them see the good in themselves. I work with kids who are too often told they can't or that they're stupid by those around them. I love it when they get to see just how special and amazing they really are.

Q: What are your goals in life?
A: I'm living my dream, I'm working to make the world a better place one kid at a time. I've managed to get my professional life in order and am currently pursuing my National Board Certification for Teaching, something that only 3% of teachers have been able to accomplish. I'd like to start putting my social life in order as its always been an area of weakness for me and I need to learn how to start thinking about myself for a change.

Martyna's Story


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.