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!

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.

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.

My Story! My life with Tourette Syndrome.

My Story: My life with Tourette Syndrome

(A picture of me ticcing at 3 years old)

Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.

Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.

Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.

Q:What are your goals in life?

A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :) 

Success Story #1!! Katy's Life with Tourette's Syndrome

Success Story: Katy's Life with Tourette Syndrome

Q: What is your name and how old are you?
A: My name is Katy, I'm 17 years old (almost 18!) and I live in Wales in the UK.

Q: How long have you had Tourette Syndrome?
A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.

Q: What kinds of tics do you have?
A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)

Q: Do you have any associated conditions?
A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.

Q: What is life like for you living with Tourette Syndrome?
A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I'd already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I've felt like a burden because everyone has had to adjust to my tics.
I felt like I wanted to record with journey and show people what it's like to live with tourettes, so that's when I started my YouTube channel 'LetsTalkTics'. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you'll end up gaining the best support if you talk to people about what you are going through.

Q: What is the hardest thing about living with Tourette Syndrome?
A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I'm still not very comfortable releasing my swearing tics in public.

Q: What do you think other people should know about Tourette Syndrome?
A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it's not always just about the funny movements and sounds.

Q: What are your strengths and what do you like to do?
A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.

Q: .What are your goals in life?
A: I'm about to start my last year in school before moving off to university, hopefully to study psychology. I'd love to work in a rehabilitation centre or an inpatient care facility.

To My Amazing Camp Twitch and Shout Campers

To my amazing camp twitch and shout campers: 

I know this time of year before school can be tough. I myself am having a fair amount of anxiety about starting my Junior year of college. Tics can be rough this time of year. Remember that is normal and we're all going through it with you  

You are never alone. Even though we may not be there physically, your camp family is always with you, supporting you and sending you lots of love. As one of my campers last year said, camp lasts all year because of the memories you made at camp and the support from your fellow campers and counselors who now care about you so much.

I just wanted to let you all know that I love you, stay strong, know that I am thinking of you, and you are going to do great things this year! 

Missing Camp Twitch and Shout Today :(

Missing all my campers and fellow counselors from camp twitch and shout today! Today was the first day I could even bring myself to watch the videos I took at camp. Watching them any sooner would have been too much for my post camp depression (PCD). Every year after camp I miss my girls and fellow counselors all too much after camp. This year was a bit less of an emotional roller coaster ride compared to last year, but my PCD was still strong for a little while. Thank you everyone at camp twitch and shout for all you do to make that week so amazing for so many kids. Missing you all and a special shout out to my amazing campers (you know who you are!) Stay strong, know that I am thinking of you, and good luck with starting school. I know you all will do great things this year 

My Professor this Semester is on the TSA Scientific Advisory Board!

Today I was looking around on National TSA's website and since i'm starting to look into PhD programs I was looking at the Medical and Scientific Advisory board. I was scrolling down the list looking at the various universities the board members are affiliated with when I saw the name of my university! 

The woman's picture looked very familiar too! It took me a few seconds to remember where I had seen her before and then it hit me, she's one of my professors this semester! I've never actually met her in person, but I had seen her picture when I looked up her e-mail. I'm taking her Biological Psychology class this semester and I was ecstatic that I had just come across the fact that she's on the TSA's scientific advisory board!

Well I guess this means I won't be needing to explain to her what TS is! Of course I'll still e-mail her and tell her I want to meet with her before classes start to explain my accommodations and let her know about my TS, but it will be so nice to have a professor who really understands TS and did long before she met me! This is going to make my first week of school this semester just a little easier, and anything that makes my first week even a tiny bit easier makes a big difference considering how rough that first week can be with the seemingly constant explaining I end up having to do. By the end of the week i'm usually exhausted, frustrated, and thinking "if I have to explain Tourette's to one more person I think i'm going to explode!!". Lol, I get through it every year though and this year i'll have one less professor i'll have to explain it to 

This is the second thing that's happened that's given me a really good feeling about this year. First my RA e-mails me back telling me she had a friend in high school who had Tourette's and now one of my professors is on the TSA Scientific Advisory Board! I think my first week of school is going to be a lot easier this year with all this and with my amazing friends standing by my side 

Feeling Better Thanks To A Friend

Feeling a little better about my new swearing tic thanks to my amazing friends! I was texting one of my best friends in college who is going to live in my suite this year and I told him about it. He was so amazingly supportive like always. We're going to be in a class this year together and so he texted me back saying "if you do it in class, i'll give a mean glare to whoever looks at you!" he also said "I was going to say that I would swear with you, but then I realized that would cause more problems. haha, if we aren't in class I'll definitely join in  "

I have the best friends in the world! I was feeling so nervous about starting school with this new tic earlier today before I talked to him, but now I'm feeling so much more confident and less nervous about it. Out of all the things I can try to do to make myself feel better when i'm ticcing or nervous about ticcing, nothing helps more than when other people make me feel at ease about my tics by standing up for me when people stare, joining in with me, or joking with me/making light of my tics. Accepting and supportive friends truly make such a huge difference in my life that I can hardly put it into words. Thank you to all those friends out there who are our first line in emotional support. You do more for us than you could ever imagine 

My Annual TS Message to my RA

Sent my annual message to my RA (the student who is technically in charge of our floor in the dorms) letting her know about my TS. I do this every year. My tics have never caused a problem in the dorms, but I still tell my RA each year just to make sure she is aware of it on the front end. 

I have no idea if there would have been problems or not if I had not told my RA each year about my TS, but I really prefer to be safe about it rather than putting myself in a difficult or uncomfortable situation (which has happened a few times when a professor/teacher/or other person i'm around hasn't been told about my TS). Anyway, my RA responded to my e-mail, and like all of my RA's in the past, she sounds amazing and accepting.

Here was her response " Thank you so much for getting back to me! I had a friend in high school who also had Tourette's so I am familiar with it, but there are definitely more things I can learn from you! Looking forward to meeting you soon!"

It always makes me so happy when someone i'm trying to educate ends up already having known someone with TS