Thursday, December 25, 2014

Pre-Hanukkah Party Tics 2014

Well it's that time of year again that every ticcer seems to look forward to and dread at the same time, the holiday season. With all the commotion, excitement, preparation, and family, tics always seem to run rampant this time of year. Today is the day of my family's yearly Hanukkah party and my tics are getting pretty darn forceful.

After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i've started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics. Being around my family members is very stressful for me (tic wise) and i'm sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, i'll just say this: I come from a family who values perfection and social status, and Tourette's doesn't really fit into that mold very well. Don't get me wrong, I love my family and I really do enjoy being home and spending time with them, but it's very rough on my tics and anxiety.

Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn't seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking "tic breaks" where I excuse myself to go to the bathroom while i'm around my family and just trying to spend less time around my family members (spending time with them in 30 min increments). These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i'm able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.

Right now i'm up in my room while my parents prepare for the party. I've been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion. It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i've been avoiding the downstairs as much as I can, I've still gotten a bit of the onion feeling in my eyes. It's not nearly as bad as last year, but it's definitely still contributing to my tics.

I'm having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i'll be able to come upstairs with her to let out my bigger tics.

Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone and good luck to everyone trying to manage the holidays with tics!

Saturday, December 13, 2014

Junior Year First Semester! Prove them Wrong :)

Well i'm back home for winter break. Overall, I had a great semester!

I was appointed to two leadership positions on campus. I'm now on the Executive Board for my university's chapter of Psi Chi, the National Honorary Society for Psychology and I was also appointed to be on the University Policy & Practice Affecting Students with Disabilities Committee.

I continued with the research i've been doing on Tourette's Syndrome and Traumatic Brain Injury on the medical school campus, and am working towards a number of publications for next semester. Hopefully at the end of next semester I will be able to say i've published a full paper on Tourette Syndrome and presented a poster on Traumatic Brain Injury at the National Conference of American Clinical Neuropsychology.

I also got two final grades back for the semester. One is an A and another is an A+ ! I'm pretty sure that the rest of my grades will also be A's as well. So far it's looking like I'll meet my goal for this semester which was to make the Dean's List at my University again.

Last thing I promise, I'm moving into a new dorm for next semester! I not only get a much bigger dorm room, but I also get to be closer to my classes, closer to the Starbucks on campus, and I'm right above the dining hall so I won't even have to go outside to get food. I get to be in a new dorm environment, meet new people, and live across from one of my friends in my sorority. I have a feeling next semester is going to be great!

Anyway, that's my semester in a nut shell. Don't ever let Tourette's hold you back! Make goals and work towards achieving them. Don't ever let someone make you think that you can't do something because of your Tourette's. If anyone ever does tell you something like this, prove them wrong :)

Tuesday, December 2, 2014

Emotions and Stress affecting my tics

I have one week left of classes, reading week, and finals which leads to a lot of stress, but on top of all that I have extra anxiety going on because of something I found out about a family member over thanksgiving break. I can't go into much detail about that situation, but it is pretty devastating and life changing for this person and the rest of our family to say the least.

Yesterday and today my muscles have been extremely sore from ticcing (mainly muscle tics in bed, and even when half asleep). Yesterday I was sore and exhausted all day. My best guess was that I was ticcing through most of the night and didn't get a lot of deep sleep, hence the sore muscles and exhaustion. A few times I woke myself up from ticcing last night and the night before.

What is happening is affecting me because not only is this person a member of my family, but my OCD/ anxiety is acting up about the situation as well. It's making my OCD thoughts worse, and is making my compulsions worse as well.

Even though it's very upsetting, one positive is that it's made me even more grateful for the life I have. It has put a lot of things into perspective and even though my tics are bad right now, I am grateful for my life, all the opportunities I have been given, and for my ability to take full advantage of these opportunities and work hard to finish my college education, apply to grad school (next year), and hopefully use this education I have been given to make a difference in the lives of others through research and clinical work in my future. I am also grateful that I am able to make a difference in the lives of others now. I love volunteering at my local Children's Hospital, forging long term connections with the patients, volunteering at camp twitch and shout, and making a difference in the lives of all of you through this page. 

Thursday, November 20, 2014

Another day in the life....Tics being set off by sniffing

Today i'm doing research in the lab over at the medical school campus and the other student that sits next to me has a cold today and keeps sniffing really loudly. It's killing me because every time she sniffs I feel the overwhelming urge to do my sniffing tic! 

My sniffing tic seems to by one of my tics I have the least control over as I hardly ever feel the premonitory urge before it happens, so it's certainty a strange feeling and something very new for me to feel the urge SO strongly today as I sit next to a person who keeps sniffing and setting me off. I feel really awkward having to sniff repetitively every time she sniffs. It's pretty embarrassing because although she may have some idea that I have TS, I haven't talked to her about it and I have no idea how much she knows about "being set off" and about how Tourette's works.

It's getting to the point where every time she sniffs, I feel the urge so strongly and try to hold back so much that it sets off multiple motor tics in addition to the sniffing that eventually happens even though I try to hold it back. I'm supposed to be in the lab for another two hours, but I don't know if I can take another two hours of this!!

Sunday, November 2, 2014

Presenting to your/your Child's Class About Tourette Syndrome

For those of you who have a child who is newly diagnosed or is thinking about presenting to his/her class about Tourette's for the first time, this is a good read for you! If your child's tics are noticeable to others, educating the class about it can only help!

I have done it both ways, choosing not to educate and choosing to educate and trust me, having my classmates know about my tics has made my life so much easier. My classmates have been nothing but accepting. After they know about my tics, they no longer think of me as the girl twitching and making noises randomly, they think of me as the girl who is smart, funny, brings up good discussion points about the reading, and oh yeah she happens to have Tourette's too :)

Monday, October 13, 2014

Sensory Processing Disorder and The Rain

Today it was pouring rain and I forgot to put on rain boots before leaving for class. My feet and bottoms of my pants were soaking wet by the time I got to class and one of the things that sets my sensory system off the most in having one part of my body be wet. I'm fine if my whole body is wet, but if just one part is wet and the rest is dry, my sensory system goes pretty haywire. 

During class my tics were very active, and my sensory system was very overwhelmed. I don't know if any of you have experienced something similar, but when my sensory system is overwhelmed by something (like in this case having wet shoes and pants), all my muscles tighten up and can't relax, and I check out mentally. When i'm overstimulated like this, its just like my body can't take any more sensory stimulation and I tune out things around. I tune out other people's voices and I stare at things for long periods of time trying not to move my eyes around too much (probably my body's way of trying to limit visual input). I wasn't able to participate in class at all because I was so checked out and after class I rushed back to my dorm.

My coordination also seems to check out. I fumbled with my key and dropped it while trying to open the door and struggled to take my pants off in a coordination fashion.

Anyone else experience anything like this because of sensory issues? Checking out mentally? Staring into space? Not being able to relax you muscles? Loosing coordination and proprioceptive abilities when overstimulated?

A Strange Encounter about TS while getting food

This week is a strange one. I've never had a stranger out in public comment about my Tourette's in my life and then suddenly it happens twice in one week. Craziness. I was getting food and did a facial tic and the server asked me "what was that?" I hadn't even realized I did a facial tic so I said "sorry, what?" 

He then said "that thing you did with your face." So I told him I had a medical condition. He responded with "oh I thought you were upset with me". I assured him that I wasn't upset with him and I had tics which were involuntary. I guess he felt kind of awkward and didn't know what to say next so he said "do you cuss people out? Like in me, you, and Irene?" I told him no. I later looked up the movie and found out it's not even about Tourette's. it's about multiple personality disorder.... Lol i just laughed. Definitely an interesting encounter

Monday, October 6, 2014

Going Out in Public with Tourette's

Today was the first time someone has laughed at me in public because of my tics. I was riding the metro back from the medical school coming back from working in the lab and was standing in the front of the metro. I was minding my own business and doing some eye tics such as blinking and rolling my eyes upwards when this guy started talking to me.
He was laughing and said to me "I see that look in your eyes" and then kept laughing. I didn't really no what to say so I just ignored him. He kept laughing for another minute or two and then when we got to the next stop, some people got off and some seats opening up so I went to sit down away from him.
I understand that he probably had no idea what Tourette's is and thought I was rolling my eyes on purpose, but it was just a new experience having a stranger comment on my tics like this. I wish more people could identity what tics are and understand that people with TS are not doing these things on purpose.

Saturday, September 27, 2014

You Know You Live In A TS House When.....

This post is one of the lighthearted posts that I love to make! Sometimes we just need to laugh about our tics and the unusual and sometimes very humerus situations that Tourette's puts us in. These quotes come from families who live with Tourette's everyday and who know all too well that more times than not, laughter can be the best medicine :) 

"You know you live in a TS house when kid #3 keeps burping and kid #1 is getting annoyed by it, but you know #3 can't help it, so the whole family just starts burping to lighten the mood." 

"You have one kid cussing up a storm, another kid making chirping noises, and another one clearing her throat ALL at the same time, and you still manage to hear your baby nephew crying over all the other noise."

"When your son is tired of hearing all the noises and yells "Shut up! Not a tic!""

"You know you live in a TS house when one person sets off the other person & we laugh at each other afterwards."

"The pics in the living room fly off the walls after bedtime. (The thrashing at night) ...when he opened a Christmas gift in front of family that were unaware of his "cop" and screams "S*** F*** F*** D***!" Yup I'm pretty sure they still pray for me!"

"You know you live in a TS house when the neighbors think you own a drum set!! Nope, it's just the banging on the walls, table and chairs!!"

"When you walk two steps forward and one step backwards, shake your hand and do it again all the way through the house...then suddenly realize your TS daughter isn't even there!! But your so use to doing it with her it's now become your own habit!! LOL" 

"When the neighbor/ good friend( thank God) texts you at midnight asking,"Did you hear that?", only to realize you have to inform her it's your lil' ticcer banging her hands against the walls and rod iron bed as she sleeps!! She was glad to know it wasn't an intruder!! lol Nope, just the TS house!!" 
"When you grow to enjoy hearing your child tell every street sign  "shut the f--- up" as you're driving" 

"When shoe shopping for an 8 year old involves making sure the perfect pair is not too high on the ankle but not too low, tight enough but not too tight, and doesn't involve velcro - because he it not only has to have shoes that feel right but has also been known to spend over 30 minutes fastening velcro to make sure it's lined up perfectly."

"You know you live in a TS house when it always sounds like looney toons and they haven't been watched in 4+ months... "Wooo-Hoo!" 

"Asking "do you know you just said _____?" The random echolalia leads to word play and my daughter doesn't even realize what she's said sometimes!" 

"When you wake up in the middle of the night because an arm tic is knocking on your bedroom wall..." 

"When you have to Explain to offended women that "no, she doesn't really think you're pregnant, and she's not saying you're fat... She heard 'baby doll dresses make girls look pregnant' and now she can't help saying 'you look pregnant' whenever she sees one."

"When you know your a fish because your son constantly says "my mom's a fish"

"When you are greeted with "welcome to staples" when you walk into a room...When you find yourself saying "fubble nuggets", just because you got so used to hearing it."

Thursday, September 25, 2014

Talking at the Medical/Nursing School about Tourette's

Today was the day! I spoke on a panel with a neurologist and nurse to about 50 medical school students and nursing students! I was originally told there were going to be about 200-400 people there and was relieved when I got there to see there were only 50. The fact that there were less people made it easier and less stressful for me, but at the same time it would have been great if I could educated even more people. That's okay though, 50 people is a lot and educating people about Tourette's ins't simply a one day thing! I educate people on a regular basis! 

Anyway, today I was excited to help future doctors and nurses understand more about Tourette's! I got tons of great questions and answered them as honestly as I could. I talked about my diagnosis process, CBIT, medication, how I tell my classes about my TS, my experience in school with TS, and more! One lady asked me if I could drive, and even though I told her I could, the neurologist wasn't so sure that I convinced her, lol. 

Afterwards , an older man came up to me and told me that he enjoyed the talk, that he now knows TS is so much more than swearing which he didn't know before, that he thought I was really in control of my life, was doing great a great job dealing with living with Tourette's, and that he loves the way I live my life. That made my day! 

At the end, my neurologists nurse told me that she thinks everyone really enjoyed having me there and that I was really helpful. I felt really confident on stage and like I could just be myself. I'm proud of myself for spreading awareness and talking openly and confidently about my Tourette's in front of such a large group. Hopefully I made a difference :) 

Monday, September 15, 2014

Being Rejected by Someone Else With Tourette's

I haven't written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven't felt secure enough to write about it until now. It was too painful and made me too upset to even think about writing about. But it's been a full year and I feel like I have enough distance from it now and strength to let let it hurt me anymore. 

A year ago, I was a sophmore in college who had come back to school after break. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself. Of course I was coming back to incredibly accepting friends. 

On campus this year, I met another person with Tourette's. This was the the first person I had met at my college who also has Tourette's. The girl was a year older than me and I was so excited to meet another person with TS on campus! I told her I have TS too! 

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about my experiences with TS, but after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong? Now that I had opened my mouth did she think for some reason that I was just a really lame person who she didn't want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as "cool" as she is.

Later on, I decided to send her a message. This message was kind and nothing intrusive at all about TS or anything else. It was just a friendly message. Even though she had seen the message though, she never responded. When I saw her on campus, she looked the other way, and she never talked to me again. Instead she purposefully avoided me. I had been rejected for the first time since middle school and not by just anyone, by someone else who has Tourette's. It reminded me of all the rejection I had faced when I was young because I was "different". It reminded me of the girls at sleep away camp in middle school who had bullied me and made fun of me. It was very hurtful to feel these feelings again. When I told my friends, they tried to comfort me and tell me that the girl I had met was the one who was missing out. They told me I was a great friend and that it was her loss that she didn't want to get to know me. Even with their comforting words, I still felt so hurt. To be rejected by someone who knows what it's like to be different and who knows what it's like to have TS was hard.

This year, I have seen her on campus a few times already. I feel different about it though this year. There's a building on campus where I like to get food, but it's one of the buildings where she has a lot of classes and i've seen her there twice. A year ago, I would have stopped going there to get lunch just so I didn't have to see her. I wanted to hide from her. Now though, I'm not going to give her that kind of power over me. I went to get food in that building today anyway even though I knew I might see her there. I did in fact see her from a distance, but it didn't stop me or make me feel as if I was "less" because she had rejected me.

I am confident in who I am. I have so many friends with and without TS who love me, care about me, and value my friendship. They like me for who I am. They spend time with me because they enjoy my company, like my personality, and they don't mind my tics either. They see me for who I am and don't find anything wrong with that. One person, regardless of if they have Tourette's or not, is not going to have the power over me to make me feel bad about myself because i'm not going to let them.

Today I had a thought that I had never thought of before. When I saw this girl from afar I thought "Thank god it was me who she rejected, and not one of my campers". I know how strong my campers are and how resilient and beautiful they are, but it still made me want to cry thinking of them being rejected by this girl like I was. I thought of each of them and how I would never do something like that to one of them or any other child who had Tourette's or was "different" in some way. Thank god it was me and not one of my girls is all I could think. It would hurt me to much to think of them being rejected by someone else with Tourette's. I know many of them have been through what I have and have been bullied or not included by their peers at some point in their life. To think of them having to go through this and then later on as mature young adults to have all those feelings brought back by someone like them who also has Tourette's and has also felt rejection made me very emotional. I never want this to happen to them. I can only hope it never does.

Thursday, September 11, 2014

Answering Questions about Tourette's!

Today was my annual meeting with my RA. Every year the RA's at my college do something called a 1 on 1 with each of the students on their floor where they meet with them and get to know them. I had already e-mailed my RA about my Tourette's and I did my little 1 minute Tourette's speech for my floor last week. At the end I said "if anyone has questions, feel free to ask!" Today during my 1 on 1, my RA took me up on the offer and told me she wanted to learn more about Tourette's. We talked about regular things first like how i'm liking my Junior year, what classes i'm taking, and what other things i'm involved with on camous. Then she asked me several questions about Tourette's such as "does everyone with Tourette's have vocal tics?", "is it genetic?", and "is there treatment?" I was more than happy to answer all of her questions and was really glad she asked them. I love it when people want to learn more about TS, and I love spreading awareness!

After I was done answering her questions she said she was really glad that I was open about my Tourette's and willing to talk about it. She had a friend in high school who had Tourette's but never got the opportunity to ask him questions about it really and was really glad to learn more about it.She said she really likes getting to know more about people and the experiences they've had in their life. I just love people like that! :)

Monday, September 8, 2014

Mouth Splint for relief from jaw tics

Got my mouth splint today! I'm excited to finally have something to give me some relief from my jaw clenching tic. My orthodontist explained it as a bandaid for my mouth. I'll start wearing it every night to give my jaw some relief when I sleep(I clench and grind my teeth even more in my sleep apparently) and if I ever really need to I can wear it for relief during the day too. I'll probably only ever wear it at night or on weekends (even though its transparent/clear colored, it's pretty notifiable). It feels good to have it in because I know my teeth are protected. My dentist told me if I didn't get the splint, I could end up with permanent damage to my enamel and have to end up getting crowns on most of my teeth. This is the first tic that has done damage to my body, and while its a tough realization that one of my tics is actually doing real damage, its important I know so that I can take the proper steps to protect myself and my body.

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 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.

Sunday, August 17, 2014

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.

Wednesday, August 13, 2014

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 

Friday, August 8, 2014

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 

Wednesday, August 6, 2014

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 

Friday, August 1, 2014

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

Thursday, July 31, 2014

CBIT for Tics

Today was my first day meeting with the CBIT therapist I'm going to work with. My neurologist recommended I try CBIT for tics before trying a different medication. I don't know if it's going to help, but i'm sure hoping so! I can tell you one thing, it was so nice to not have to educate the therapist about TS like I usually have to do! She was teaching me new things instead of the other way around. She is very kind and I really like her and her approach. I'm cautiously hopeful! A reduction of my tics would be so nice :) 

To learn more about CBIT, click here: 

An Update about CBIT and how it has affected my tics after 8 months of therapy (on and off) (this update is from April, 2015): 

CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don't get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe. One thing that's helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn't. We've had to make a lot of adjustments to the original CBIT protocols because #1 paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT). So we have had to get rid of that part competently, and also re-arrange a lot of other things as well. With a lot of tweaking though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication i've been on and the best part is NO SIDE EFFECTS!

Now that's not to say some of the tics i've worked on with CBIT will never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with a lot less tics! I'd say that's pretty darn good! The ones I am most happy i've targeted with therapy of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.
 I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.

I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing responses.