Friday, December 30, 2011

Out of Our Control: The Chronicled Lives of Tourette's Syndrome Documentary Trailer

So I spent pretty much all day yesterday making a trailer for the documentary that i'm making. I think it turned out pretty well! It took me a while to figure out the audio mixing which can get pretty complicated but it worked in the end and I was really excited with how well it turned out! I've been making my video's with adobe premiere elements and it's a pretty good video editing software in my opinion besides its few kinks that need to be worked out such as slowness and its tendency to crash. Good thing I save like every few minutes! Otherwise I could lose lots of work.  I think this is going to be a lot bigger than I originally expected because I'm getting multiple videos and messages daily from people who want to be a part of the documentary. Anyway so far I have about 7 videos that are finished and ready for the project already and I have heard from countless other people with TS who are in the process of making their own videos now. One of the things I'm most excited about is that Jess Thom, AKA Tourettes Hero e-mailed me today to let me know that she would be happy to make a video for documentary and be part of it! I cannot tell you how much his totally made my day! I'm so excited to get more videos and to get started on the documentary. Anyway here's the trailer that I made yesterday and Jess Thom's video from UK televison!

Tourette's Syndrome Awareness Documentary Trailer 

Jess Thom on British Television 

Wednesday, December 28, 2011

Taking Action Against Tourette's At Night!

Since i've been having so much trouble sleeping lately, my mom and I decided it was time to take action! Today I ordered my first ever weighted blanket and I'm really excited for it to come! Weighted blankets have been proven to help reduce tics at night for those with Tourette's, proven to decrease the time it takes to fall asleep, and proven to help you stay asleep.

Here is a part of an article from Tourette's Action about Tourette's and weighted blankets:
"Research into weighted blankets by the University of Southern Denmark has shown that they reduce the time taken to fall asleep by almost 40%, taking 15 minutes on average to drop off. The study also showed the tendency to wake up during the night was reduced. 
There are various types of blankets available - one example is a blanket that offers an even distribution of weight, stocked by Rompa. Another type contains silent plastic balls to 'help stimulate a sense of calm and feelings of safety.' We're told that an 11-year old boy from Preston, who has ADHD and Tourette syndrome (TS) has found that he can now settle easier at night thanks this type of blanket. 
Like many children with ADHD and TS, Harrison Stanley was unable to sleep or even stay in his own bed at night; a problem which caused stress and prolonged tiredness for the whole family." 
So anyway, I am hoping that the blanket will help me as much as it helped Harrison!!! I ordered mine in a pink color and it should come in 3 to 4 weeks or maybe even sooner. Lets hope it shows up soon because I need to be getting more sleep than I've been getting lately. The other night I woke up squealing, hitting myself, and jerking like crazy. I hate the full body jerking at night. Makes it so hard to go to sleep. I really need this weighted blanket to work, or at least just help. 
On another note I am now on 10mg of Lexipro and am completely weened off of Zoloft for my OCD meds. Hopefully I will have more success with Lexipro than I've had with Zoloft. So far i've been on 10mg of the Lexipro for three days and I've had no bad side effects just yet! I hope it stays that way because the last thing I need right now is side effects. 
Also just got back from another date with my boyfriend, Speed Racer. We ate dinner, went to see the new Sherlock Holmes movie, and then went to get ice cream later! During the movie I had quite a bit of trouble with ticcing. My strong head nod which somehow gets my entire body involved was really acting up along with my hand tics where I shake and flick them at the wrists. After the movie my boyfriend told me he thinks there is one thing I could never be in my future: a human statue. One of those people who dress like a statue and stand still for money in Paris and New York and such. Haha, I had to agree with him on this one. He sure knows how to make me feel better :) 

Tuesday, December 27, 2011

Out of our control: The Chronicled lives of Tourettes Syndrome Documentary Project Start

Hey guys! So I've decided to make a Tourette's Syndrome awareness project video in honor of the upcoming TS awareness month! So maybe TS awareness month isn't until May....but hey I want to get started early so I can get as many video's gathered up as possible. Anyone who has TS or who has a child, friend, or cousin with TS can help! Here's how!!!

Basically I'm going to get a bunch of video's from different people with TS telling their stories and answering questions about TS and I'm going to put them all together to make a special awareness video. All you would need to do for this project is make a video answering these questions and then send it to me via the inbox, youtube, or my e-mail, I made a video to tell about the project so feel free to check that out. I already have video's from two different people for the project saved on my computer and all ready to go! I've had responses from more than 5 other people telling me that they are going to make video's very soon for the project! This is going to be pretty great I think!! I can't wait to get more videos! But I need your help! Please watch the video telling more about the project and submit a video of your own to be included in the final project!!!! :) 

Here's the video telling more about the project: 

Here are the questions:

Say your name, age, and that you have Tourettes
When were you diagnosed?
Explain what it was like being diagnosed.
What are some of your tics?
Did you tell people? Did you hide it?
How did you choose to tell others if you did?
What's the hardest part of having TS?
Do you think they're a positive side to having TS?
What do you want others to know about TS?
What associated conditions do you have? OCD?
ADD? ADHD? SPD? Etct..
Do you take medication? Has it helped?
Have you ever been bullied or teased?
What would you say to someone who was just
When do you tic the most? the least?
What do you like to do? are you an
artist? a musican? do you like to
cook or act in plays?
Anything else you want to tell people!

Monday, December 26, 2011

Hanukkah Party!! Happy Holidays!

Hey guys! So last night was my Hanukkah party and I have lots to tell! I can't believe its already over. I had so much fun and I wish it wasn't over. Anyway so my cousin Kitty and her mom came over at about 2:00 to help us get ready for the party. My mom just had shoulder surgery so she needed help with a lot of the cooking and such. We also had a party helper so that helped a lot too. Kitty and I didn't end up doing much helping really, because everyone seemed to have it under control. We did end up wrapping some presents at one point though. We went up to my room and hung out for like 5 hours. Lol, the party didn't start until 7:00. We played with her new phone, the iphone 4GS and Cerie, which I'm going to get as one of my Hannukkah presents later. We talked about a lot of stuff and we also watched a very bad movie about a church cult that killed homosexuals. We didn't feel the need to finish the movie so we turned it off, lol. We knew it would be a different scene when my other cousins Lipstick and Twitch showed up though. Lipstick and Twitch hadn't talked or even been in the same room for 6 months because they got into a giant fight about a boyfriend that Twitch started dating after Lipstick had broken up with him after dating him for 3 years. I thought they would at least be civil to each other, but nope I was wrong.

Twitch showed up about 10 minutes before Lipstick did and immediately came up to my room to hide. It took me about 10 minutes after Lipstick showed up to convince Twitch to go downstairs and that if she did Lipstick wouldn't attack her. Well I was right, she didn't attack her, but Twitch and Lipstick didn't say a word to each other the whole night! They avoided each other like the plague but from what I heard that was a better alternative than Lipstick actually approaching her because boy did she have some nasty things to say. Drama, Drama, Drama.

We all still had fun and Twitch and I actually spent a lot of time talking and hanging out one on one. I felt closer to her last night than I really ever have. When it started getting late I mentioned that I was getting tired, but only because i've been waking up at like 5 in the morning not able to go back to sleep for over an hour. Twitch seemed concerned and asked me why that was happening and when I told her I didn't know but my body just told me it was time to wake up she gave me some advice and told me the same thing was happening to her a little while ago and that I should ask my doctor about it. You know you're at my family's gathering when people can relate to waking up at 5am ticcing with your body telling you its time to wake up. You also know you're at my family's gathering when passing through the crowd you head "Oh yeah, I have lots of twitches, like I have to raise my hand a 5 times before I go in a room". So this is how I found out that my older 22 year old cousin also has some sort of TS/OCD combo. And you also know you're at one of my family gatherings when the presents consist of car vacume cleaners, my grandmothers nuts, and ice scrapers for wind shields.

Anyway, all in all it was a very fun night! I ate lots of Latkas and Brisket, talked lots about college, and got some good presents. A really cute key chain for a key to my moms car was my favorite present. Hope everyone else had a good Hanukkah/Christmas/ Holiday season!

Daily Video's:

Happy Hanukkah! Dogs Celebrate Hanukkah Tooo!! 
My Doggie is having fun too! Although I haven't taken a 
video of it. Lol! 

Saturday, December 24, 2011

Day Before Hanukkah Party

Lately I've been irritated because I've been waking up at exactly 5 in the morning, rolling around, rubbing my feet together, tightening my muscles, squirming, and doing the fish out of water tic. I've had trouble sleeping since I was young but lately this waking up at 5 in the morning thing has been getting on my nerves. It'll usually take me over an hour for my body to calm down so I can go back to sleep which is quite annoying. So far I've tried getting some water, putting my dog in my bed, and getting up and walking around, but not much is helping. Any suggestions would be greatly appreciated on this front! Also today I ran into my cousin, Kitty, at the super market. I was excited to see her there and we talked a lot about our Hanukkah party that we're having tomorrow. She was also happy for me to hear that  Speed Racer and I are officially dating. She gave me a hug and said "Why didn't you tell me sooner?!?". Lol, I guess I was just waiting for the right opportunity.

I'm excited for the Hanukkah party but i've had to help out a lot in the house to help get ready for it. I have to help out even more than usual because my mom just had shoulder surgery and can't do very much. There are a lot of things I can't do because of my OCD right now such as cooking, doing dishes, doing laundry, and most types of cleaning which means I can't help out a lot. I wish I could help more but most of the time I just can't. Worst of all is that most of the time I'm too ashamed to admit that I can't do something because of OCD. Most of the time i'd rather be considered lazy or defiant than crazy or helpless. So I am just the "bad" daughter right now pretty much. My mom and dad understand I think but my brother just thinks i'm awful right now. I keep trying to think "this too shall pass". Anyway at least tomorrow I'll get to be with my cousins. Twitch will be there and it always makes me feel better when I'm not the only one ticcing.

Daily Video's:

Hospitalized for a TS diagnosis? (It only took me a 30 min Neuro visit! Took 10 years to get to the neurologist tho!) 

Another Marc Elliot Vid

Daily Links:

Exploring TS through Dance

At Random TSF Canada Documentary Project Article

At Random TSF Canada Site 

Friday, December 23, 2011

Quick Winter Break Update

Well there's not much to report on today. I've been sitting around at home roaming around the internet and youtube. I've been filling out some scholarships for college and that's pretty much it. How exciting! Not really, lol. Today is my 5th day of taking 25 mg of Zoloft and 5 mg of Lexipro for my OCD and on Monday I'll stop taking zoloft completely and just switch to 10mg of Lexipro . Lexipro itsn't officially FDA approved for OCD but my doctor says that's because the drug company didn't want to pay the extra money to get the approval but it still works just as well as other medications that are FDA approved for OCD. Maybe it will even work better than other approved meds for me. This is what I am hoping. Well not much more to say unfortunately. I am getting excited for our Hanukkah party that my family is hosting for my dad's side of the family on Sunday! A Hanukkah party on Christmas! Haha, it just happened to be the day that everyone was free. Anyway I get to see my three cousins who are my age, Twitch, Kitty, and Lipstick, and hopefully we will all have fun!

Daily Video's:

Newest DBS case for TS-- Jayne Bargent (UK) 

A 16 year old suddenly presenting with tics and spells of passing out
Follow her story here

Meet Twitch's Friend from Camp Twitch and Shout, Lena! 
Follow her story here

Daily Links: 

Thursday, December 22, 2011

Tourette's Syndrome: The Wild Tiger Inside of Me (Poem)

Here's a poem I wrote about living with Tourettes. It's titled "Tourette's Syndrome: The Wild Tiger Inside of Me".  I wrote it last spring and edited it a lot over the summer when I was at my University writing program. Hope you guys like it! Feel free to comment and let me know what you think! This poem will also be published tomorrow on the NJCTS Teens4TS site so you can feel free to comment on it there as well.

Tourette's Syndrome: The Wild Tiger Inside of Me

I feel the underside of your black paws
as you find your way through my dark and bloody veins
and as your strong yet wobbly newborn legs
suddenly feel the urge to jolt forward.
I feel how you teethe at my muscles
like the fresh meat of a gazelle,
and how you nudge your head,
forcefully against the inside of
my shoulders, my arms, my neck
until I move,
until I can’t stop.
I feel that desperation with which you wish
for the wind to play gently across your face
and for the metallic nighttime grasses
to sweep against the stripes of your fur.
I feel it every time your paws scrape and pound
against the sides of my body.
You are mine in a way,
wild one;
there is no latch
to open the cage that is my body,
no way for those black eyes that shine
like a darkened moon to know light.
Oh my wild little tiger,
at times you make standing in one place
like running barefoot through an empty parking lot
that stretches endlessly into the frigid night.
At times you make the cold air that sits in my throat
like the jagged edges of black rocks.
At times you
make me different.
Oh my wild little tiger,
my curse,
my almost
constant companion,
my unwanted teacher,
you are I are one yet
so often I feel that I am your
play toy and that one day you will
rip me to shreds
from the inside out.
More than anything
I want to scream out to you,
make you feel how much
it hurts, how much my muscles ache
after just a day of your relentless torture.
I want to make you know
that I sit on the other side,
swimming backstroke through this whir of noise
which one might call life.
I want to make you know how I want to hit back,
so, so hard.

Tuesday, December 20, 2011

A Memory from the Past: The "No Move" Game

I just love it when a memory from the past comes up out of seemingly nowhere. One day you're sitting at the computer doing some homework or watching a movie and you suddenly see a memory that had been pushed aside and put in some dark corner of your brain until just now when some synapse fired off somewhere and brought it back from oblivion by mere chance of brain chemistry or by something that you might see in your day that reminds you of something long forgotten. The other night I was laying in bed, trying so hard to stay still and to stop ticcing and squirming and scratching, and suddenly the little 2nd or 3rd grade version of myself, which I like to think is still somewhere inside of me, said "Play the "NO MOVE" game. This is when, for the first time in a long time, I thought of those nights spent playing the "No Move" game when I was little. I remembered how frustrated I was with myself when I was trying to stay still and go to bed at night and when I just KEPT MOVING. Thus the invention of the "no move" game, which is a very simple game and involves doing exactly what the game is titled: not moving.  I would see how long I could stay still for in bed and every time I scratched or squirmed or tightened my muscles (my nighttime tics at the time) I would loose the game and would have to start over. As you can imagine, I lost quite often. I wonder why I just didn't call it the "don't move" game, but who knows what forms the strange figments of a child's mind. Anyway that was my little memory that I thought about for the first time in a long while. Just thought I would share one of the many frustrations of living with Tourette's as a child.

Learn about TS and Meet Kids Living it!

Kids Explain Tourette's 

Meet Samm: A TS and OCD Sufferer,  7th Grader, Dog Lover 

Meet Andrew: TS Sufferer, Samm's Brother, 3rd Grader

Meet Trevin: TS Sufferer, 7 year old, Young Member of Team TSA

Daily Links: 

Tourette Syndrome Foundation of Canada's Kids Korner 

TS Info and Support For Kids: Growing up with TS

TSA for Young People Page

Monday, December 19, 2011

Relaxing and OCD Medication Change

Well I'd have to say my life is not very bloggable right now. I've been sitting at home for the most part, sleeping late, watching TV, and watching movies. I think the break has been making my tics better but who really knows. I went on another date with my boyfriend yesterday. We went out to eat brunch and then went to a chess museum. It was fun but we could only hang out for a few hours because he had to go study for finals. His finals are today, Tuesday, and Wednesday. TS comes up at various times when we're together. I start ticcing and he asks me a question or two about it or jokes about it. Overall he makes me feel so normal and I am just so at ease around him.

This morning I had an appointment with my psychiatrist and we decided to change my OCD medication. Since I'm 18 now, I'm no longer a pediatric case and there are more meds to try out. The med i'm on right now, Zoloft, makes me really tired and spacey and isn't doing all that much for my OCD because I'm on a low dose because the higher doses make me even more tired. It's really important that I can go up on a higher dose so that OCD doesn't.......take over my life. So now I'm going to try out Lexipro which will hopefully make me less tired and will allow me to go up on a higher dose. My Psychologist says it may even make me more energetic. So tonight I'm going to start the new med. I probably won't notice any changes for a few weeks so we'll see how this goes....

Daily Video's: Meet Four OCD Sufferers 

Meet Kathleen Dunn: An OCD Sufferer and Young Author 

MeeJeremy Bennett: OCD Sufferer, Author, Magician 

Meet Severan: OCD Sufferer, High School Student, Star Athlete 

Meet Howie Mandel: OCD Sufferer, Well Known Comedian and Actor, Author 

Daily Links: 

International OCD Foundation 

Article: Howie Mandel Goes Public with OCD 

Article: OCD and Tourette Syndrome: Re-examining the Relationship

Tourette Syndrome Plus Website (For TS and it's Associated Disorders)

Friday, December 16, 2011

Winter Break!! Yesss!

So today was my last day of school before winter break! It was a long day, my neck muscles were extremely sore from a neck and mouth tic, and my tics were still pretty bad because of yesterday. All in all though I got through the day and I am so glad it's winter break. The break will give me lots of relaxation time and will hopefully help calm my tics down. Anyway since I'm going to have two full weeks off of school I may not have that much to blog about and I may not be posting every day. On the other hand I could be super bored over break and be compelled to blog like crazyyy! Who knows? I guess we'll just have to see! I already have some good ideas for blog posts and new blogging ideas. Over the next two weeks expect to hear about how the break is effecting my tics, my Hanukkah party with my cousins, hanging out with my boyfriend and other friends, and much more! Anyway I'm also going to do some posts introducing various Touretters in the community. I've already introduced Marc Elliot, Brad Cohen, and Jaylen Arnold but there are so many more! Another thing I'm going to start doing is including daily TS links and video's under each of my new blog posts starting today.

Oh yeah and by boyfriend did his health project on Tourettes in honor of me!! I felt very honored and he even included some of my more unique tics when he listed examples of tics. Thanks Speed Racer!!

Daily Video's: 

Tourettes: I Swear I can Sing featuring Ruth Ojadi (Part 1): 

TEDxYouth@Hewitt - Marc Elliot: 

Daily Links: 

TSF Canada's Great Wall of Tics 

An Excellent Youtube Channel by a Teen with TS (My Friend Starry!!) 

Another Great Youtube Channel by a Camp Twitch and Shouter (Alex!) 

A Blog by a Parent with a Son who has TS 

Thursday, December 15, 2011

Princeton University!!!! Maybe?!?

So I know I already posted today but I think this calls for a second post. I applied early action to Princeton University( per the advice of my college counsler at school), which is the #1 university in the US which is tied with Harvard for the #1 slot, and got the schools decision back today. Anyways, I wanted to share this.

I did not get rejected! Which is all you can really hope for with these ivy league schools. I didn't exactly get accepted either, but I did get deferred. Basically they didn't accept me but they didn't reject me either. My application goes back to the regular decision applicant pool and will be evaluated again in February. I was really really excited about this because it's a big deal to get deferred.

A lot of people get rejected since it is the #1 university in the country and being deferred means that the school thinks your application deserves to be evaluated again and needs to be considered seriously. Basically the school just wants to see how your going to do for the rest of the year before they accept you for sure.

My application was not laughed out of the applicant pool, on the contrary it was considered seriously and is going to be considered seriously again. Being deferred means I am still in the running and I still have a chance to get into Princeton. I'm not too nervous considering I've already gotten into college and I have so many other applications out to other very prestigious schools that I am still waiting on.

I've already been accepted into University of Iowa and Indianna University which are my two safety/back up schools. Both of these schools admitted me into their honors colleges and each gave me a lot of merit based scholarship money. So if I don't get into Princeton when they re-evaluate my application, it will not be the end of the world. I have had many friends who were flat out rejected from colleges this week and not even deferred so I am very proud of myself right now.

Steam Punk, who has a perfect 4.0 gpa and a perfect SAT score, had the same thing happen to her with Harvard today and she is proud to be considered seriously by the university as well. All in all a good way to end the day! Anything is possible, don't ever give up. Princeton knows about my Tourette's because I wrote my college essay about TS and if anything they probably consider me a diverse and unique candidate, as I am a Jewish kid with TS.

Don't ever think you can't apply to the best colleges in the country or be in a prestigious career if you have TS. If you have the confidence and the will, TS can never stop you from achieving your dreams and being successful.

My Experience with Bullying and Jaylen's Challenge

So today I thought I would share my experience of bullying as a child. I was talking about this earlier today with a friend and we both agreed that today as teens it only takes one word. Tourettes. And then the person who was staring, or mocking shuts up real fast and becomes very very apologetic. They genuinely feel bad. It only takes one word. Although it usually only takes one word now as I am a senior in high school, I think almost everyone with Tourettes deals with being the target to bullying at one point or another in their experience, especially if they had TS as a kid. And yes, this is something I dealt with as well. The fact that I wasn't diagnosed as a kid made being bullied for something I didn't even understand so much harder. 

Starting in 4th grade my tics seemed to get more complex. I had a pretty decently long list of tics through these years but I didn't know what they were. I knew I did weird things at this point, but I didn't even know Tourettes existed. I just thought I was really weird. I still had the sniffling tic pretty frequently which in 4th grade seemed to be combined with a slurping sound that I made with my mouth. Sometimes I would just do the slurping sound on its own though. A

Also I started a squeaking sound which I usually only did while just waking up, trying to go to sleep, or sometimes while watching TV. My friends would say "What are you doing?" and my response at the time was "I'm stretching my voice". I think this is a pretty cute response and explanation for a tic for someone who had no idea what a tic even was at the time. 

I also started having more motor tics at this age. I had a motor tic where I had to hold my breath, tighten all my muscles in my stomach and chest. It essentially just look like I would freeze for a few seconds. I also had a tic where I would twitch my eye brows up and down and people would regularly say to me "you're really expressive with your eye brows" when I was doing that tic a lot. 

This is also when copropraxia showed up. Copropraxia is a type of motor tic that consists of inappropriate gestures or inappropriate touching. I started grabbing at my crotch area, which caused me a lot of trouble in terms of bullying. 

So 5th and 6th grade were the only times in my life that i've ever been bullied for having Tourettes. There were two boys in my class who spread rumors around that I grew up in a trailer park and that my parents never taught me that grabbing at my crotch area was inappropriate. They would give me nasty looks, spread rumors, and tell me that I was gross to my face. 

I wanted them to stop saying these things so much, and I wanted to be able to stop myself from doing these things that made them make fun of me, but I just wasn't able to stop. I couldn't help it. I tried to ignore them the best I could, but what they said really hurt me. I just couldn't stop myself from ticcing no matter how much I tried to control it. Looking back I realize that my tics got worse at this time because I was being bullied. The extra stress and greater attention to the tics only made them worse.

The worst thing was that I wasn't even able to tell anyone about the tics or about the bullying. The boys in my class and the things they said to me made me feel so ashamed of the things I did and because of this I was ashamed to tell anyone about it. A lot of the time I felt like I was just a weird kid and that I deserved to be picked on. 

I wasn't even able to tell anyone that these boys bullied me until years later and even then I lied to my parents and said that the boys spread rumors about me growing up in a trailer park for no reason and just because they were bored. I never have told them that it was because of Tourettes because even today there is a 5th grade me inside that is still ashamed. I have declared war against this 5th grade version of myself since I was diagnosed, and this blog is part of that war. 

Everyday I tell myself not to be ashamed of the fact that I live with Tourette's, and I try to show the people in my life this as well. Even though my friends are incredibly acccepting and supportive of TS, I still have to make an effort to convince that 5th grader inside of me to be okay with the fact that everyday I will wake up twitching and making noises and won't be able to stop. It's just a part of me, and even though it sucks sometimes, I'm going to have to deal with it. The other alternative is to hate TS and be miserable about it all the time and i've tried that before and trust me it doesn't work so well. 

Anyway I thought this would be the perfect post to introduce you all to Jaylen Arnold. Jaylen is a kid with Tourettes who is spreading awareness for TS and is on a mission to stop bullying. He's a very inspiring kid and I wish he had been around when I was being bullied in school. Visit Jaylen's Challenge and join Jaylen in helping to stop childhood bullying. Watch some of Jaylen's awareness videos as well. Way to go Jaylen! Bullying NO WAY!  

Click here to go to Jaylen's website:

Here's how Jaylen says you can help his cause: 

  • Donate as much as you can. Dont forget, donations over $10 gets an exclusive 'Bullying No Way!' glow in the dark wristband.
  • Spread the word about this cause. I am trying to change the world, one classroom at a time.
  • Don't bully people for ANY reason. When you bully someone, it is because you are insecure with yourself in some way.  If you can't help yourself, talk to a parent, a teacher, or another adult about receiving help.
  • If you are a parent and you know your child "picks" on other kids, don't laugh and think it's merely "child's play" or harmless. This is serious. Kids are losing their lives. Talk to your children, educate them. Let them watch my videos under the video links tab.
  • Take up for someone when you see bullying. Just as I'm trying to do in a sense, 'Pay It Forward'.  Stick together. A bully will pick on an individual, but a bully will not bully 5 kids standing firm together.
  • If you are getting bullied, you HAVE to tell someone. I know you don't want to tattle and make it worse, but tell someone. Tell me and I will try my best to do an 'in-service' to your school if we have the funds available. The bully will never know it had anything to do with you.
  • Come back to my website often. I am going to try and receive a strong rally of supporters in order to get help to children.

Some of Jaylen's Video's: 

Jaylen was also recently in a documentary about TS that showed on discovery health channel called Tourettes Uncovered. Here is most of the documentary which features 4 kids who have Tourettes (Jonah, Jaylen, Collin, and Marques).

Part 1:

Part 2: 

Part 3: 

Wednesday, December 14, 2011

A Rough Couple of Days for Debate King and Me

Its's been a rough few days for me and for my brother this past week. I am continuing to deal with my strained eye muscle and bad cold and last night at 5AM I woke up pretty much gasping for air because I could barley breathe thanks to this darn awful cold. I quickly got some Afrin spray which helped a lot, but once I wake up, get out of bed, and get moving, my tics wake up too. It took me quite a while to fall back asleep because of what I call my "fish out of water" tic. The fish out of water tic usually only happens to me while i'm lying down in bed, and basically what happens is my muscles in my legs, neck, back, stomach, and chest will all tighten and jerk so that I end up in very strange contorted positions and I kinda look like i'm a fish out of water. If I lay on my back, my body will usually just jolt up and if i'm laying on my side I usually end up doubled over or scrunched in a ball.

It took me quite a while to get back to sleep, but I eventually did fall asleep again. Today i've been quite tired and ticcing a whole bunch. My vocal tics have been quite loud and have been attracting a lot of attention and stares today. After lunch I started with my gagging tic where I start gagging, coughing, and gasping for air. It's really not a lot of fun. My strained muscle in my eye is started to feel a bit better at least. 

While I've been dealing with all this, my brother, Debate King, has been in the process of his first ever round of finals. He is exhausted from staying up late, angry at just about everything, super stressed, and just about as ticcy as I've ever seen him. He's been going around the house punching furniture, chairs, and just about anything else that finds itself in his way.  And he's been doing a lot of hard blinking, stomping, and even some subtle head jerking. He told me many times last night that he hates me and he hates everything and that he's mad at everything. So we're both having a rough couple of days here. But I know we'll both get through it. We'll both soon be doing a lot better when winter break starts on Friday. Thank goodness for winter break!!

I wanted to share a few videos today also! These videos are various video's of Brad Cohen, the movie that was made about his life, Front of the Class. Brad started the Brad Cohen Tourette Foundation, is a 2nd grade teacher in Georgia, wrote a book about his life with TS which was made into a movie, and started Camp Twitch and Shout in Georgia for kids and teens with TS. I actually met Brad in September at an event with my cousin, Twitch, who is a CIT at Camp Twitch and Shout. He's a big inspiration for me and for others with TS so I wanted to share these with you all. :)

Tuesday, December 13, 2011

A Total Pain of a Day

Today was a total pain i'd have to say. First of all I just got a cold. It hit me really suddenly! It was like all the sudden I couldn't breathe out of my nose at all. So I was dealing with that all day on top of the fact that I strained a muscle in my eye. Yes, that's right, I strained a muscle in my eye. Most people really don't have to worry about straining eye muscles, but because of my very frequent eye rolling tics, pulling/ straining eye muscles is just part of having TS for me. If you've never pulled or strained an eye muscle before, let me just tell you it's incredibly painful! For the first day or two after you strain it, every time you look too far left or too far right it sends a shooting and searing pain throughout your entire head. If I even begin to do an eye roll tic, i'm stopped dead in my tracks and end up lurching over in pain. I am not exaggerating here. Then after the first two days have passed, looking to the left or right is bearable but eye rolling is still intensely painful. It usually takes a weak or two for the strain to heal, but during this period of time every time I do an eye rolling tic i'm startled by the shooting pain throughout my head. Between the cold and dealing with the second day after straining an eye muscle, today was not the best day. Oh and it was freezing cold and it RAINED. ALL DAY LONG. And to top it off, I had a interview with Yale after school which I had to pretend to perk up for after a day of labored breathing and searing pain. Hopefully tomorrow will be better.

Monday, December 12, 2011

James Durbin Necklace to Benefit TSA: Wearing it to School!

I know I already posted today, but I wanted to post again about my James Durbin TSA necklace (click on the link to learn more it!). Today was the first day that I wore my new necklace to school. I had fun showing it to my friends, explaining what it was, and getting compliments on it! Only two of my friends previously knew about James Durbin and his Tourettes, but for those who didn't actually know who James Durbin was, I was happy to tell them about him and the necklace he's selling to benefit TSA. When I was wearing it today, I couldn't help but look back to earlier this year when I saw my cousin, Twitch, wearing her "Tourette's Tics me Off" bracelet for the first time. I have to admit when I saw her wearing this bracelet it almost made me jealous. She was so open about her Tourette's, that she was willing to wear it, literally. It was a way of owning it in a way. To me it was a way of saying, "Hey I have Tourette's. I may not always have control over my body, but I do have control to choose to really let others know that I'm okay with it and I'm not ashamed or embarrassed that I have it". When I saw her wearing it for the first time it was only shortly after I had first started opening up to my friends about my TS. I was still very self conscious about it and I admired her in a way for wearing the bracelet. Today was my day to wear TS in a sense. Today I did not hesitate to tell people that "Yes, I am wearing a necklace to benefit TS, and yes I'm going to tell you about it because I'm not embarrassed of Tourette's. It's just a part of me".

NJCTS: Teens4TS and TS Parents Online

I've recently been branching out of my own personal blog to write on the New Jersey Center for TS's Teens4TS blog. I'm not from New Jersey, but anyone is invited to post on the blog which is very exciting! NJCTS recently started two blogs, one for teens with TS, and one for parents who have kids with TS. Both are excellent blogs that I have really enjoyed reading. NJCTS was nice enough to post a link to my blog under their TS links on the teens blog and I've already had one post (click here to see it!) on the teens site. My next post on the teens site will be up this Tuesday. I will be occasionally blogging on the NJCTS Teens4TS blog and will of course still be blogging on my own blog many times a week. NJCTS has also tweeted about my blog which has prompted me to get my very first twitter account! I've never really used twitter before, but I'm finding it very exciting and fun. My boyfriend the other day  made a cute joke and told me that I didn't even need twitter to tweet. It took me a second to get it , but I quickly figured out he was referring to my bird chirping tic. A clever comparison! Anyway, check out my blog post on the Teens4TS site as well as the other posts on the teen and parents sites. Both blogs have posts from teens and parents from all over the US and even outside of the US as well. Many of the posts are helpful, inspirational, and just fun to read! :)

TS Parents Online:

Saturday, December 10, 2011

TSA Teen Pizza Night

Just got back from the TSA teen pizza night! I'm really glad I went. In total 6 teens showed up. A 12 year old boy who came from an hour and a half away just to come to the meeting, three freshman boys, a freshman from a local college, and me!

Even though it was all boys, I was excited to be with a group of people who not only wouldn't even give me a second look if I started twitching and making noises but also twitch and make noises themselves. Everyone at the table was ticcing in some manner throughout the night and I felt right at home. I find it so fascinating that everyone with TS different and there are no two people with TS who are the same.

There were quite a variety of tics throughout the night from the teens: tongue thrusting and sticking out, shoulder rotating, head jerks, snorts, blinking, arm jerking, stomping, and facial grimacing to name a few. At one point we were all talking about Marc Elliot (Click here to see my previous experiance with Marc), and then Brad Cohen (Click here to see a video about Brad Cohen!), and then our diagnosis experiences.

One boy said he was diagnosed when he was young because he had to make shapes out of his hands and rotate his shoulders to make invisible X's in the air. Quite the creative tics! And another boy said he was diagnosed after his parents noticed he was hitting himself in the ear, hitting himself in the chest, and snapping a lot.

Anyway, we all had fun sharing stories and being around others who tic too. Its nice meeting people where the conversation doesn't have to start with explaining Tourette's. I was kind of disappointed because no one commented on my James Durbin wing necklace which came in the mail yesterday and which I wore specially for the night! I asked if any of them knew James Durbin, but they said they didn't. Oh well! I guess they weren't big American Idol fans.

The good thing is that since it turned out so well the head of the chapter told me that we should do the pizza night gatherings regularly! She said that every month that the chapter doesn't do an event like golf or bowling, they'll do a teen pizza night. The chapter really didn't have teen oriented events before and I'm so glad that they'll have one now. The whole thing was my suggestion and I feel really good about it because I know that even when I'm off in college there will be an opportunity for teens with TS in my state to meet others with TS. There will be a time (even if only for a few nights a year) where they don't have to worry about having to explain Tourette's, where they can be with other teens who understand what its like completely, and where they can just be themselves :) .