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!

Treat others the way you would want to be treated

I know I have shared this pic before, but I’m sharing it again. How a person treats you truly reflects more about them than it does about you. Don’t ever let someone else make you feel like you are less. Instead, understand that the way they are treating you says everything about the kind of person they are.

If you feel someone is treating you poorly, trust your instincts and know it’s time for to move on and find different people to surround yourself with. Let these people you are leaving behind find someone else to put down, because trust me if they are putting you down, you are not the first one they have done this to and you will not be the last.

Applications for 2015 Tim Howard NJCTS Leadership Academy accepted through January 30!

The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity and will be accepted through Friday, January 30.

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially.

collage2

Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

Tim Howard’s book “The Keeper” is now available!

Here’s are two excerpts from Tim Howard’s new book, “The Keeper,” which came out yesterday, December 9. The first is from the chapter called “Like Coming Home” and talks about arriving at Everton Football Club:

“At the start of the ’06-’07 season, I step out onto the field at Goodison Park, where Everton plays. It’s the derby with Liverpool, the hometown rivals. I love the feel of the place — the rickety old stadium, as historic and un-corporate as they come. I love the fans, their pure, passionate, and deafeningly loud dedication to the team. I love the fact that the team has taken a chance on me, that they’ve pulled me out of a dark place. Standing there on the field, about to play Liverpool, all I want to do is play my heart out. I’ve come home.”

This one is from an early chapter called “Goals That Matter”, when Howard first learned that he had Tourette Syndrome & OCD:

“I struggle in school — I’m hyperactive, and I have trouble sitting in my seat. My mother, aware of my desperate need to move, to run, signs me up for soccer by age 6. I fall in love with the game. I love the fluid back-and-forth, the challenge of playing a game using only one’s feet. By age 11, I begin to show strange behaviors; I touch things compulsively. I become obsessed with picking up random items for no logical reason. Then I develop tics — twitches and jerks that I can’t control no matter how hard I try. Mom and I learn that I have Tourette Syndrome (TS) and Obsessive Compulsive Disorder (OCD). The doctor tells my mom that often, these conditions have a “flip side,” and he’s seen cases where kids have special gifts. It is only on the sports fields that I feel relief, so I focus on my athletic skills exclusively….obsessively.”

You can read much more about Tim Howard, who is a Board Member of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) here:

Thank you to everyone who offered me encouragement on my page

Thank you so much to those of you who commented on my post from the other day by coming over to my Facebook page and offering encouragement! Everyone who commented brought light to my day and encouraged me so much. I am so glad to hear that I have helped so many people though my page.

One of my absolute favorite things to hear is that a parent is sharing my posts with their child who has TS. Some of you commented to say that your child looks forward to my posts and that my posts encourage them and make them feel less alone. I cannot express how good this makes me feel and how much I love making a difference in your children’s lives.

I also love hearing how your kids are doing and about how my site is helping them, so please comment on my posts to let me know how things are going or send me a message and it will probably make my day!

Also thank you to those of you who are adults with TS who commented letting me know my posts have helped you! I love to hear that my stories and posts about my “adventures” as a college student living with TS are helpful and inspiring to you.

Today is a much better day. Even though my ticcing is still pretty bad, my body seems to be less sore and seems to have gotten used to the increased ticcing. Also my OCD thoughts are better and I’m moving though my day with a better attitude. I know that all of your comments have contributed to the fact that today has been a lot better .

Anxiety over boys … need advice!

Good evening … and the anxiety kicks in. This isn’t 100 percent Tourette’s related, but is very much anxiety related. Soo there’s this one guy I like a lot. Today I invited him over. I’m going to have a few friends over, and him. They all know I like him. One or two of them know I really want to ask him out. And one wants to ask him out for me. SO I have a lot of stress on me.

I am not sure exactly how to tell him I wanna be his girlfriend. How to tell him I have feelings for him. I want to be the bigger person cause usually I’m down to the ground. I wanted to ask him out. Alone. But I’m worried “what if one of my friends walk in while I’m asking him out?” Or “what if I kiss him then they walk in and are all like OOOOOOHHHH?” And the most stressful question is: “What if he says no?”

So I’m not sure who will reply on time, but does anyone have a way I can ask him out with the least anxiety? I’m thinking a note, but I’m not sure.. ’cause that may make me look weak. Anyways, thoughts?

Also, this is starting to make me tic a little. I haven’t ticced that much in the past 3-6 months. But its starting to kick in again. It’s scarring me … does anyone else get more tics when their nervous/anxious?

Happy December! But the cold brings on serious tics…

Hello everyone! I haven’t posted in a long time, and I had forgotten to post yesterday so here it is … HAPPY DECEMBER!! My favorite month of the year. Christmas is my favorite holiday and it’s also my birth month.  I’m loving this cold weather. My tics are like a roller-coaster, but when they occur, they’re more severe than usual because of the season change.

How are your tics doing since the cold started coming in? Have an eptasticful day! 

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.