A look back at the success of TSelfie Day!

A few weeks ago, on June 7, it was European Tourette Syndrome Awareness Day (or ETSA)! This day we use to attract as much awareness as possible for Tourette, especially from te media. I know in America you have the entire month, but we are very happy to have this day — it’s only the second time, and we wanted to make it as big as possible!

This year, we decited to work together and try to come up with a great idea to attract awareness. First we were with three organizations in the Netherlands and Belgium, but later we pitched it in the European meeting in Paris and everybody loved our idea and so the TSelfie was born and made into a huge success!

In case you’ve missed it: we invented te ‘TSelfie’, the Tourette Selfie (conviniently spelled with TS at the start. 😉 This is a selfie taken with a wink, one of the most common tics! This way, we wanted to attract attention and also focus on the fact that Tourette is more than just swearing, there are a lot of other tics too!

We’ve worked very hard in attracting publicity and local celebraties, to attract even more attention. We also made a website, www.tselfie.eu, were we posted all the TSelfies and gave the public some explanation about Tourette, as well as links to all the different associations in Europe.

On the day itself, it turned out to be a HUGE succes with TSelfies from lots of celebraties and a LOT of people from a lot of different countries! I’ve seen TSelfies from America and India and almost every country in between! We even got a TSelfie from the Hungarian waterpolo team (in bathingsuite, of course…!!!), who were the Olympic champions from 2000, 2004 and 2008!

In the end, we got about 824 TSelfies from all around the world, which I made into a collage! I know there are more of them, but there were so many, there is no way to know for sure whether we got them all! I am so proud of what we’ve accomplished and I can’t wait for next year!

All these people supporting our cause: Tourette Awareness! It’s very humbling to see how this many people who I don’t even know, support us by posting a TSelfie, which we invented in a impulsive and creative group right here in the Netherlands and Belgium.

Besides the TSelfie, I was also on national TV on June 7! They taped here at my house and the shops nearby and at 11 p.m. I was on TV! I was very nervous, because I thought (for no reason, of course) that they weren’t gonna air it, but they did and I got a lot of great messages from people about it!

You can see it here (it’s Dutch): http://www.hartvannederland.nl/top-nieuws/2014/leven-met-tourette/

And this past Monday (June 23) I was  in a magazine about being an educator with a disability and today I will finally officially graduate and get my diploma! More on all of that soon!

My latest song: “The Ghost”

Welcome summer & goodbye high school!

It’s been more than six months since I last reached out with my song and video “Wallpaper.” It got more than 30,000 views and some great coverage. I wrote a couple of new songs and even posted a cover (people keep telling me to do that).

I didn’t do videos because I’ve been so busy wrapping up Grade 12, and I also have 2 part-time jobs now. I’m starting Algonquin in September in the School of Media and Design—excited about this!

I’d appreciate it if you’d listen to at least “The Ghost” if you can spare about 3 minutes. 🙂 Drop me a note in the comments section, too, if you’d like. I always love hearing feedback.

THE GHOST

https://www.youtube.com/watch?v=LTVvfSmh21k

—VERSE TWO—

The candle burns at both ends,

You say we’re nothing but friends,

I understand,

Standing at the foot of my bed

The ghost is shaking his head

I’m spilling red

Four Months

https://www.youtube.com/watch?v=mpX9EbNH8nA&list=TLtmm87LdbG6ISkmy9y615sJHsxL_9XxAi

Cover – You’ve Got a Friend

https://www.youtube.com/watch?v=pLjCFwvI-uM&index=3&list=TLtmm87LdbG6ISkmy9y615sJHsxL_9XxAi

PRESS – “Wallpaper”

1. Skope Magazine: http://skopemag.com/2014/04/25/megan-landry-wallpaper

2. Feminindie: http://wordkrapht.com/main/2014/04/30/feminindie-megan-landry/

•  YOUTUBE:  https://www.youtube.com/user/MeganLandryPixelDust

•  FACEBOOK:  https://www.facebook.com/pages/Megan-Landry-singersongwriter/196106140483946

•  LINKEDIN:  http://www.linkedin.com/profile/view?id=272839659&trk=nav_responsive_tab_profile

2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

2014 NJCTS Children’s Scholarship Award Essay: “I Have No Regrets”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

When the word “disease” is said, overcoming is definitely not the first thing that comes to peoples’ minds. In my opinion, having Tourette’s is a battle. I have been bullied, ridiculed, and laughed at. I think a lot about the kid I could have become, that is, if I surrendered. But luckily, I didn’t.

I managed to muster the strength and courage to face my problem. In fact, I sometimes convince myself that I no longer have TS. I have accepted the fact that I will never be cured of this. So what does this mean for me? Hide behind excuses for the rest of my life? Succumb to being a nobody? Not anymore.

Ever since I entered high school, I slowly started to see the best out of every situation. I have used my tics to my advantage by channeling my energy into something positive: setting goals and achieving them. Why should I let TS get in the way of challenging myself? I found that I can use this obstacle to my advantage.

When I was in middle school, I definitely didn’t have the same optimism about having TS as I do now. Unfortunately back then, I fell into the trap of self-pity. I would always make excuses for myself. I didn’t challenge myself in school because I thought my mental abilities weren’t sufficient for mainstream classes.

My bizarre motor tics made me feel out of place and ashamed. My fear was that people would make fun of me, especially this one tic in particular (that I still have today) where I tweak my neck to the side to feel temporary relief. If I held my tics in, I felt like exploding. Often times I would tic then nonchalantly try to cover it up by using “normal” gestures, such as cracking my neck.

Once I gained the courage to move into mainstream classes in my last year of middle school, things weren’t as bad as I had anticipated.

Continue reading

Coprolalia down, tics up

Hello! Happy summer to everyone. I am currently still trying to remember how to relax (and succeeding, I feel) after a very busy semester at university. Being so busy through the last semester had quite an effect on my tics.

Luckily, the coprolalia I had last time I posted hasn’t come back. I sometimes feel likes it’s going to come, but manage to stop it after the ‘f’, so that’s been super good for me! However the bursts of “Hello”, “what”, “achoo” and “weasels” have been coming out in full force. Especially “weasels.” It has sort of become a crowd favourite, with people jokingly requesting T-shirts with it written on!

My motor tics are still punching me in the chest, which is a pain, but isn’t painful and I’m pretty much able to carry on with whatever I’m doing to an extent. This tic has also sometimes morphed into one where my right hand is just sort of wiggling constantly. It happened the other day for over two hours which was super annoying, and left me aching the next day.

My legs have also been joining in on ticcing A LOT! I used to have weird jerks from my legs, but recently there’s been more twitching making it very, very difficult to walk. I also had tics where one of my legs just would not work for a while. This sometimes will stop me walking for a while, but sometimes I am able to hobble around for a while.

I also have started having falling tics where legs just give way. The first day when this happened it was pretty constant, where I would get up and be in the floor again in around three minutes. Luckily, this has decreased significantly, and I can sense these coming now and it is more like just my knees buckling quickly, and I don’t end up on the floor. But my Tourette’s is definitely not winning.

I have managed to finish my second year of uni and I am really happy with life right now! I will also try and be more proactive in blogging this summer, so I will hopefully see you soon!

2014 NJCTS Children’s Scholarship Award Essay: “Anything is Possible”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

For most children, strep throat implies symptoms of a fever and difficulty swallowing. However for me, the strep virus attacks the neurological system, resulting in Tourette Syndrome. In general, symptoms are inconsistent and not easily recognizable because each patient has his/her own tic profile. My first symptom was an intensely competitive mindset. I was unable to tolerate losing. But, as time went on, my attitude evolved from being focused on winning, to winning when I perform at my best.

This winning attitude is best explained through my experiences as an ice hockey goalie. In hockey, you may think that tics would interfere, especially as a goalie. Surprisingly, I have learned that when I channel my focus on the game, my ticcing is inconsequential. Although I tic on the ice by opening and closing my glove repeatedly, I do not let it affect my game; proper mentality can conquer anything, even a twitch. This was one of many lessons learned on the ice that made me who I am off the ice.

Growing up with a Tourette’s tic that drove me to peak performance helped me learn that hard work creates success. Even when I was not on the ice with my varsity team, I benefitted from my positive mind-set. I used other practices with my club teams, private lessons, and skillenhancement exercises at home to keep my game at its best. During my junior year in high school, I was still competing for playing time on the ice hockey team.

The bottom line is this: whoever is best will be the starter for the next season. In hockey, a single moment can change everything. It can change the possession of the puck, the score of a game, and even a season for a player. My season changing moment was during a game against Montgomery High School.

Coming on to the ice against a fired-up team did not faze me; it fueled me. I knew I needed to prove to my coach that I was the best and I would do whatever it took. With a close game nearing the final buzzer, one of the Montgomery top scorers broke away from the pack. As he raced toward me, I came out of the net to cut-off his angle. He fired a shot so fast I could barely see it. I knew this moment would influence my senior year season.

I caught the puck in my glove while sliding into a split. After my save, my team scored another goal to secure the lead at 2-0. After the game my coach hugged me. At that moment, he knew I was a winning goalie and I knew I would be his goalie for the next season. More importantly, I learned that anything can be accomplished with hard work and a winning attitude. I have never felt sorry for myself for having Tourette’s, and at that moment, I became grateful for having this be apart of me.

My Tourette’s tics taught me lessons that shaped who I am today. I learned that I can do anything I set my mind to. As I was absorbing these lessons and incorporating them into my hockey and life as a whole, I was inspired to document this quote and hang it over my desk: “Never giving up is not repetitive failure; it’s a strategy.”

For some, Tourette’s is an annoying neurological disorder to be managed. For me, it has taught me what is possible. I am even more appreciative of my brain and what it has to offer.

2014 NJCTS Children’s Scholarship Award Essay: “Forge Ahead”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

As a person who lives with Tourettes and ADHD day in and day out, I see it as a blessing rather than an obstacle. Yes, growing up with Tourettes was hard and, yes, people told me there would be certain things I couldn’t do, such as pitching for a baseball team or sitting in a normal class room, but that didn’t stop me from trying and ultimately succeeding. Tourettes has given me much more than anything I could have asked for. It has given me a work ethic, a greater respect for my body and mind and a will to succeed at all costs.

I remember like it was yesterday, standing in my back yard, baseball glove in one hand ball in the other. I would practice standing still from the stretch for hours, Making sure I didn’t twitch so the imaginary base runners wouldn’t advance. It was one of the main reasons why I wasn’t allowed to pitch in games, I would be called for a balk. It was a habit of mine to twitch while standing still for a few seconds. Coaches wouldn’t allow me to pitch again.

So I decided to fix this problem myself or try to overcome it. I developed a work ethic at a very young age from this; and it has paid dividends once I went to high school. I now proudly say from work ethics, I am the ace of my school pitching staff and I am one of the top 5 pitchers in my county.

As for academics, I am not number one in my class but I am a tremendously hard working student. Working hard has rewarded me with maintaining a 4.0 GPA in high school and making honor roll every year. I’m proud to say that Tourettes has not prevented me from doing what I love, instead of dwelling, I conquered!

Furthermore, Tourettes has instilled a trust within my mind and body, Coaches can read my face when I feel like I’m losing control of my body. A big joke is where in world has Michael gone? I look inside my mind and go to a safe place where nothing or no one can make me twitch.

A place that I have control and everything is safe and I pitch with ease. I know that nothing comes easy in life and in order to succeed you must work hard. Tourettes has taught me that. Nobody can take away the fact that I have overcome so much and still continue to do so. I wouldn’t change a thing in the world if I had the chance. I welcome adversity because it is just another obstacle that pushes rne to succeed.

My mind and body work hand in hand and when I am fully concentrated, I know Tourettes will not slow me down if I want the end result bad enough. People love to have doubts and the best way to shut these people up is to accomplish something extraordinary, and although doing well in school and sports settings isn’t anything too special, it still made people eat their words.

When there is a brick wall in the way, a person has two options, give up or break the wall down. Tourettes is that brick wall standing in my way, I chose not to turn my back and give up, but rather do everything it took to thrive in that certain situation. Nowadays, people quit on things like its nothing, which is unacceptable in my life.

You cannot let something get in the way of whatever it is you want. You make your own story, your own destiny, no one else can. Having Tourettes has given me that will to succeed; it’s given me the ability to go an extra mile to get my end result. I credit Tourettes for much of the accomplishments in my life; it goes to show that hard work truly does pay off.

As my years have been short, my accomplishments have been great and I plan to tackle the rest of my life with the same force and learn to overcome the obstacles Tourettes may continue to put in front of me. One day I plan on being a role model for young children especially boys who are afuaid of what the diagnosis of Tourettes could mean to them. Forge ahead and you can make anything happen in your life and continue to knock down those brick walls.

2014 NJCTS Children’s Scholarship Award Essay: “Born to Stand Out”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

At a young age, I was faced with a choice. Let the diagnosis I just received define me, or accept it as part of who I am and embrace life head on. I chose the latter. I was diagnosed with Tourette’s, OCD and ADHD.

When some people hear Tourette’s, they automatically think of society’s inaccurate portrayal of a disorder where people shout out obscenities or inappropriate words. They treat it as a joke, as if people who live with Tourette’s choose to do the things they do, or could stop it if they wanted to. Very few people understand what having Tourette’s is really like.

Over the years, l’ve experienced a wide range of tics. My motor tics included excessive blinking, sniffing, jerking my neck, and popping my shoulder, often making everyday life uncomfortable and awkward. l’ve had vocal tics where I would constantly clear my throat, grun! or make strange noises that would often draw confused and disapproving looks from those around me.

Living with this disorder has been far from easy, fraught with physical pain and many ups and downs. When I was younger and just learning to cope with my Tourette’s, my tics would make it difficult to focus in class. Having an eye blinking tic or neck tic would make it difficult to read. Nevertheless, I pushed myself to make the honor roll every marking period from third grade on.

Whenever the classroom got quiet and the teacher was speaking, I would feel the eyes of my classmates burning deep into the back of my neck. lt was as if they had laser vision, with eyes fixated on me, examining my every move. Regardless of whether anyone was looking or not, I was different, I stood out and thought they were staring at me.

I would try to suppress the tic. But that’s just like trying to stifle a sneeze or resisting scratching an itch. Eventually you just have to do it, just as I do when the urge reaches that point of becoming no longer bearable. With time, therapy, and educating myself on Tourette’s, l’ve learned to adapt to the struggles this disorder entails.

Continue reading

2014 NJCTS Children’s Scholarship Award Essay: “I’m Not a Diagnosis”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I always want to be seen as the person I am, not as a diagnosis. I have very high functioning Autism and need social support and academic accommodations. I am creative, musical, artistic and have a great sense of humor. I also have ADHD and Tourette Syndrome.

I have been to some clinics for Tourette Syndrome, such as a clinic at The University of Alabama at Birmingham. That’s right, I had to fly from New Jersey to Atlanta, then hop on another flight to Alabama. The people at the clinic were so sweet and polite. They even offered me tickets to a football game at the school’s stadium as a result of telling them that I am in the marching band.

Having Tourette Syndrome is a challenge I have to deal with in life, and although I live with that challenge every day, I have acquired tools that help me cope.

My life has never been what one would call “easy.” Three months after I turned 8, my parents sent me to a residential school to help “at-risk” youth. My time there was spent teaching me how to deal with the frustration that my disabilities give me. I needed to learn how to calmly communicate without being overly emotional.

This was quite a challenge because I was only eight, The School was called The Andrus Children’s Center. Being apart from my parents was a very difficult experience, They came on weekends and eventually took me home on weekends so I could practice the skills I had learned.

I grew a lot as an individual at Andrus.

Continue reading

2014 NJCTS Children’s Scholarship Award Essay: “Music Rescued Me”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I am Matt and I am a senior at Red Bank Regional High School. Graduation will be on June 20, 2014. I am in the Visual and Performing Arts Academy as an lnstrumental Music Major. I play clarinet, bass clarinet and saxophone. I also have Tourette Syndrome.

As early as I can remember I had tics. These tics ranged from a lot of eye blinking, to throat clearing, sniffles, and movements from my head and neck. I interrupted quiet class time especially while taking exams due to my vocal throat clearing and sniffles.

When I was in 4th grade I wanted to study the clarinet. I was discouraged all the way until 5th grade due to my tics. Finally, after really practicing a lot, I got good enough to audition for the All Shore Band in Middle School and I won second chair bass clarinet. I showed myself and everyone around me, including my panents, my older brother and all of my teachers that I could overcome Tourette Syndrome.

My neurologist was very helpful to me. He recommended that I stop eating foods with nitrates in them and to also stop eating anything with food dye and keep my sugar intake low. This is very difficult to do as a teenager. I did my best but it was very hard to do. While everyone else was eating hot dogs, cup cakes, Twizzlers and drinking orange soda, I couldn’t.

I was also prescribed medications. These really didn’t seem to help. But I took them. Some made me very tired but I keep taking these medicines thinking how much worse I would be without them.

My clarinet rescued me. I found out that I had perfect pitch. This gift I believed was my compensation for having Tourette Syndrome. In high school I really started achieving musically. I was accepted to the High School All Shore Band, NJ Region 2 Band, All State Band, All Eastern Band (Hartford, Connecticut) and finally the All National Band (Nashville, Tennessee). Yes, I had my tics throughout these accomplishrnents and yes, many times I was disturbing, but I worked through these.

lf it wasn’t for Tourette Syndrome I may not have pushed myself in the beginning and may not have ever discovered that ! have perfect pitch. I did not let this Syndrome stop me. I will be attending Eastman School of Music in the fall.