It’s that time of year again …

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!

Need some encouragement today please

I need some positivity and encouragement today, so if you could, I would really appreciate any comment on this post to let me know how this page has helped you or how I have helped you and your family.

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). Every time I sneeze, cough or do any type of vocal tic, I am in pain because of the pressure and aggravation the ticcing puts on my already very sore muscles. 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. My tic where I hit myself in the chest has come back as well, and that’s a rough one.

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.

So if you could, please comment about how my Facebook page has helped you and anything else you can think of that you would like to see on the page to help further.

One of our researchers talks about life with her younger sister who lives with TS

This blog is written by Diana Beljaars a PhD researcher from Cardiff University in Wales. Diana is originally from Holland and speaks Dutch and English. In this blog article she writes poignantly about her relationship with her sister who has Tourettes Syndrome.

My Touretty sister and me

Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then, things changed. She started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that finally could be named Tourette syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.

We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.

Diana’s sister has been blogging for Teens4TS for more than 2 years now. Read all about her adventures here!

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: “No negative impact on my life”

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!

Over the course of my life, I will be forced to face many challenges, many of which I will struggle to overcome. So far in my 18 years, I have faced many challenges, and today, I am still fighting a battle that will affect me for many more years to come.

Tourette Syndrome has played a huge role in my life, and has affected my outlook on almost everything. I first noticed my tics at the age of 7, and I couldn’t figure out what was wrong with me. My family and friends would always tell me to calm down and stop moving around so much, but I felt as if I couldn’t.

When it got to a point in fifth grade when I could barely control it, I began hiding myself in the back of crowds and doing anything in my power not to draw attention to myself. However, not drawing attention to myself was very hard to do, especially on the soccer field.

I was involved in soccer most of my childhood life, and Tourette Syndrome even affected me on the field. One of my tics when I was younger was spinning in circles, and I often found myself in the middle of a soccer game spinning, not paying attention to the game.

All through elementary school and middle school, I constantly had people telling me to stop my habits and asking me why I do the things I do. The only reply I ever had was, “because I want to”, until I finally asked my mom to take me to a doctor my freshman year of high school.

After many question and tests, I was diagnosed with Tourette Syndrome, and I finally understood why my body does what it does. Although I understood what was happening, it didn’t make my condition any easier. I was still embarrassed and afraid that people would notice my tics. I blinked and coughed way more than the average person, and I often twitched my head.

My friends all noticed these things, and high school is a scary place to be laughed at. However, going into freshman year,I went out for the cross country and track teams, and this was when things started looking more positive for me. I found that running helped me focus and that when I run, my tics don’t occur as often.

Outside of running, my tics are sometimes very intense, and there was a point when I didn’t know how to deal with them, Now that I have found this sport, I can live with my Tourette Syndrome, and whenever it gets too intense to handle, I can just go out for a run. There are still many times when people ask me why I do the things I do and move the ways I do, and I have now realized that Tourette Syndrome is a part of me, and that it just makes me a little different.

I like to think about the far I have come from when I first noticed my tics, and how open I can be about my Tourette Syndrom now. Tourette Syndrome no longer has a negative impact on my life, but it has taught me how to be strong and how to overcome the difficult battles life throws at you.

2014 NJCTS Children’s Scholarship Award Essay: “I’m Moving On”

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!

Tourettes. We all have our own challenges. Mine has a name. It is a name that will be with me forever. So what do I do? For me, l just move on, When I was twelve years old I was diagnosed with Tourette Syndrome.  I couldn’t control the tics that my body was doing, I was having a harder time in school, and my teachers and family were becoming less patient. I had been already been diagnosed with ADD which made school and other work harder and while my Tourettes was not as severe as some other cases,  it was still a struggle.

Tourette Syndrome (TS) is a neurological disorder in which causes involuntary motor and/or vocal tics and twitches. TS has coexisting conditions such as ADD/ADHD, speech and motor skill deficiencies, and Obsessive Compulsive Disorder. Although 1 out of 100 children have Tourette Syndrome, it is a commonly misunderstood disorder and there is no cure. When I was first diagnosed, my tics included various vocal, facial and motor tics. Tics are like a sneeze in that you can’t stop them from happening.

Having TS can feel like being a puppet on a string with someone pulling your body  in ways that you can’t stop. lt can be so consuming to try to do the tic or try to stop from doing it, that you can’t think of anything else. Tics wax and wane so you never know what each week will bring.

Despite the complications and difficulties resulting from various symptoms, the personal philosophy that I have developed has always been to deal with “the hand I’ve been dealt” and keep moving forward.

Continue reading

Improving a relationship I’ve always wanted

I am feeling really good right now for a number of reasons. First, I am finished with all my midterms for now. I had about five major midterms last week and finished them all on Thursday. Then I got to come home on Thursday night since it’s fall break and I got to spend three days at home with my parents, my dog and my brother. It was such a nice break from all the stress of college life.

Most of all, though, I am very happy right now because my grandma made my night earlier tonight. As those of you who follow my posts know, my cousin who is my age and who also has Tourette’s, OCD and its other various co-occurring conditions was in the hospital for three days last week. She came back home five days ago and the day she came home my grandma told me she sounded good over the telephone but I was still not convinced.

I was really worried about her, even though I knew she was home. I was worried she would go back to the hospital and wouldn’t be able to stay home. I was almost waiting from a text from my grandma or a post on Facebook from her brother saying she was back in the hospital. I was worried she wouldn’t recover and that things would just go downhill from here.

My grandma texted me last night, though, and her text gave me so much hope! I have been trying to reach out to my cousin and connect with her on a stronger level ever since I found out we both have a Tourette’s + (Tourette’s and all the co-occurring conditions that come with it) diagnosis.

I thought of how amazing it was that there was someone else in my family who was my exact same age and also has Tourette’s +. I thought how neat that we both are going through similar things and how great it would be if we could have a strong relationship and really be there for each other.

I had been alone for so long with my struggles, had had no one to talk to about what I was going through, and felt like no one understood me. I thought if she felt anywhere near the same way that I did that she would want to have someone to talk to and confide in as much as I did.

It would have meant so much to me to have someone like that in my life when I felt like no one around me could understand. It didn’t quite work out though. I’m not sure why. Continue reading

The future

Hey everyone, this first appeared on my Life’s A Twitch blog site back in July, but I wanted to share it here, too. Thanks for reading!

I’m kind of in a rough spot right now. I used to always have everything planned out. I knew my future and I knew what I wanted. Now that I’m getting closer to college, I’m not sure what I want to do anymore. It’s really affecting me. I like to have everything planned out right away. It’s part of my OCD. I live about three years in the future constantly. I can’t see anything in front of me.

I’m going into junior year of high school and I feel like I’m starting sophomore year of college. I do not see a computer in front of me. I see a small laptop in a tiny dorm room. I don’t see three large windows next to me. I see a loft bed and tons of textbooks. I can’t live in the present. It’s not how I work.

I need to live so far ahead that I know everything is going to be OK. I am going to be 16 years old in two months and I do not know how to drive. I have not even considered Drivers Ed in the past because of my Tourette’s. I have driven before on a few back roads, and it was terrifying. I kept taking my hands off the wheel and my eyes off the road to tic. Driving is a sort of trigger for tics.

As you already know, I don’t live in the present. Three years from now, in college, I need to be able to know how to drive. I can’t drive at the moment and I need to be able to. It is all a part of the plan. If I look farther in the future, I need to drive to my job, right?

All of you know it is true. Everyone has to do it. Go to college, get a job, get married, buy a house, have kids, retire, die. This is how life works. I want to go to college, get a job, get married, and have kids, but how can I? My Tourette’s is in the way of everything.

I know a lot of people with Tourette’s say they can drive, but I can’t. I’ve tried. If I can’t drive, I can’t conform to a normal life. Maybe I’m not meant to do things the normal way.

My Tourettes has been really bad lately. I don’t know how I’m getting through it, but I am. I haven’t been depressed for a while now, thankfully, but suicide has crossed my mind. It crosses every person’s mind though, doesn’t it?

What isn’t so normal is that today I got really stressed out about my future and then it started blurring. I didn’t want to have a plan anymore. It all seemed to be falling apart. How in the world could I accomplish anything I wanted to do? What did I even want to do?

I started planning a suicide. I think a lot of people do that, though. Maybe I’m wrong. Maybe I’m part of the not so many that actually stress out to the point that they start planning their own demise. I was so sure that tonight I was going to swallow a bunch of pills and it would all be gone. Everything would be gone. I would be gone. I wouldn’t have to worry about anything anymore. I wouldn’t have to tic. I wouldn’t get depressed from time to time. I wouldn’t be planning everything in my future, because I wouldn’t have a future. It sounded so nice to be done with everything.

Even so, there are so many repercussions from a suicide. I’m sure my family would be devastated. I’m sure my friends would be upset. A lot of times when the thoughts come to me, I think that no one loves me and that no one would care if I was gone.

Today the thoughts did not come. It was nothing like the times I was depressed out of my mind. It was not like when I felt worthless. It was different. I was stressed out of my mind and upset. I wanted to be gone. When I was able to calm down, I was still thinking about a suicide, but after putting everything into perspective, I decided against it.

I still don’t really know what my future holds, and that scares me. I like control. I like being able to know where everything and everyone is and everything that is going to happen. I don’t like that my future is shaky and blurry and that I can’t see into it. I don’t have a definite future, and it’s so frightening. I feel stressed, not in control, and unhappy, but most of all, I feel scared.

How others view my Tourette’s

The other day my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak, I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished.

Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette’s. I told her that she has my permission to educate all future guests about my Tourette’s and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette’s, which she found helpful as well.

She must have done a very good job educating our guest poet for today because I had no troubles at all. Professor B didn’t even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class.

I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high-pitched squeaks, a sound that sounds like “uh” “uh” or “ah” “ah”, and my tic where I say “woof”.

I really appreciated this positive experience with a new professor, who I had never even met before personally, and was very impressed with my professor’s ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling, though, when I’m having a lot of tics in a class or when I meet a new professor or adult that I haven’t previously talked with about my Tourette’s that the professor or adult has an automatic negative feeling toward me and my tics or is annoyed by them or doesn’t like me because of my Tourette’s. Continue reading

2013 NJCTS Children’s Scholarship Award Essay: “Taking Control”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2013 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.

Silvers, AmandaHaving no control over what your body does is a scary thought for most people. For me, it’s.just a typical day. I have Tourette Syndrome, a neurological disorder in which I make movements and noises that are uncontrollable.

My parents have always taught me to be open about it, because they didn’t want me to be embarrassed about my Tourette’s. The worst thing I could do is to hide my tics, because I would be hiding a part of myself. They wanted me to be proud of everything I am.

My parents have been there for me no matter what, especially in the worse times. Whenever I hated my Tourette’s, they would tell me that it was given to me because I could handle it, and I was strong enough to overcome the challenge. Continue reading