School, social media and life … take up a lot of time!

I’ve been meaning to write a blog for a long time now, but I’ve been SOOOO busy these past few, well, months! I’m graduating this coming spring, and it takes up more time than I thought. Which is pretty normal, I guess, but I’ve been ignoring that the first few months of the school year.

The thing is, I have to make a thesis, which consists of research and than a practical part, in which I have to test my research results. But to do research, you have to read a LOT. And that’s my problem, I have very little concentration and because of that, I don’t like to read. Well, to be honest, I’m afraid of books.

All the time when I’m reading, I really struggle to have enough concentration to even understand what the book says and that constantly reminds me of the fact that I have Tourette and that, because of that, there’s something I cannot do. I don’t like it when I’m reminded of that, and I’m actually really afraid of that feeling, so books were just not my thing..

For the first few months I just ignored the fact that I had to read, but that also meant that I fell a few months behind. So I finally decided to go back to my psychologist and have a session of EMDR, which is a great therapy that helps me with just about anything.

After one session it was way better, and now I’m almost back where I have to be to graduate and turn in my thesis on time. I’m still struggling to start working on it every time I need to, but I noticed I wasn’t the only student — especially not the only student with Tourette — who has that problem.

I don’t really know how to change it, except for working late at night. But that only makes it worse in the morning, and I still have two days of interning every week, so I have to get up early those days. I do keep my free Wednesdays and weekends, to rest, otherwise I go crazy. So I only have two days a week left to work on my thesis and other school stuff, but that’s OK. In the end, I really think it’s gonna be OK and I will be able to turn in my thesis on time and, if so, I might even graduate early!

To end on a positive note: The Dutch TSA is now the third most influential patient organization on social media in THE ENTIRE COUNTRY (The Netherlands)! And that’s for a big part because of me! I did a social media course a few months back and now everything is organized, and I really know what I’m doing, so our Kloutscore went up big time!

We now have way more influence and also much more interaction, followers and likes, and I’m really proud of that! Of course, it takes up a bit (more) of my time, but I really love it! It’s really a lot of fun doing it and seeing my follower count go up every day 🙂 So … NJCTS, need a pro to run your social media? 😉

Tourette’s is hard, but life is good

Hi guys, my name is T.J. Stanley, I am 20 years old and I have Tourette Syndrome. I attend Mason Gross School of Arts at Rutgers University in New Brunswick, N.J. My major is cinematography, and I am hoping it will bring me to some fun and exciting new places.

I was diagnosed with Tourette’s when I was 11 years of age, and it has been a heck of a ride. Rutgers is going well, I am meeting new friends, attending all my classes and loving the film classes. But Tourette’s has still followed me; it may be hard, but I have been consistently moving on and forgetting about the tics.

My tics have been racking up a lot, and it really has been getting bad with the twitches, leg spasms, yelling of words and noises. But I can say as long as I am focused on school work and/or hanging out with my friends, it is hardly noticeable.

Attending a four-year college now has made me feel more confident and pushed me to move on from those “ticcing” years and really see what life has to offer me in the long run. I know for a FACT, I would NOT be the same person today if I wasn’t diagnosed with Tourette’s that day in 6th grade.

I am not saying that being diagnosed with it was bad, but it is definitely something “someone” had planned for me and knew it would change my way of life. I love my life and knowing that if I go through a rough time, there is always someone there to help pick me back up.

I have researched and done many different types of meditation to help me relax if I feel my tics acting up. It really is helpful and I HIGHLY recommend it. I love the state that my life and body is currently in — I’ve never felt so replenished, revived or “safe.”

I would never have made it to this point without the love and support of my family, friends and fellow Touretters. Keep moving forward and always keep your head up.

And if you’re not doing anything on Saturday and live with driving distance of Mendham, N.J., come join me at the 4th annual NJ Walks for TS. It’s gonna be a great day of fun, awareness and fundraising for the New Jersey Center for Tourette Syndrome & Associated Disorders. You won’t want to miss it!

NJ Walks for TS at Mendham is here … thank you to EVERYONE who is supporting it!

I cannot believe it is already late in 2013 and almost time for the 4th annual NJ Walks for TS at Mendham! I am so thankful for everyone that has contributed and could not ask for a better support system. This year is going to be a blast, especially with all of the familiar faces as well as the new supporters.

It has been a long journey and I appreciate all of the help while I am away at school. Back in 2009, I had huge visions of this expanding and growing into a huge event right off the bat. After being brought back to earth and thinking realistically, I realized that it would take time, work and a lot of support to get this high off the ground like I had planned.

It is crazy how much this walk has come, I and could not be any prouder! This walk and the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) organization is very near and dear to my heart. I will continue to support this cause and work on this event every year. Thank you to everyone who supports us, and we welcome any new supporter!

Life is good … make it better by joining me Saturday at the Mendham Tourette Walk!

Hey everyone. I have been so busy since the summer came to an end. I’ve been in back to back theater shows. I started COLLEGE. I love school, I never thought that those words would come out of my mouth. I am dealing with a broken foot … well, a re-broken foot. I have been in a cast since September … an old injury decided to reappear.

I am really enjoying life right now despite the big boot cast I have to lug with me. A few cool things.

  1. I not only met, but I performed for Tony Award Winner Joe Dipietro
  2. I am having a ball playing Eugene in Neil Simon’s “Brighton Beach Memoirs”
  3. People in college don’t seem to pay as much attention to my tics. They are more accepting.
  4. I am in a show on the main stage at my college.
  5. I am recording new music
  6. I had the honor of performing at the New Jersey Disability Pride Parade

You can always visit me on my Facebook fan page, too!.

I can’t wait for the NJ Walks for TS event in Mendham on Saturday so I can finally meet some of you. I am of course looking forward to singing for all of you, but most of all I am just looking forward to celebrating everyone’s efforts.

I have to give a special shout out to my friend Tommy Licato. He has worked so hard to raise funds for Team Tommy. I decided instead of building my own team I would support Tommy’s. I know I am a celebrity blogger, but around here he is the real celebrity in my opinion. He works so hard to help raise awareness and I am proud of him.

So remember to push those fundraisers out there. Awareness is key, but we need to raise money so we can keep helping others with Tourette Syndrome.

Big neurologist appointment today

Well, today is my appointment with my neurologist. Ironically, having had Tourette’s since I was 3 years old and having been diagnosed for about 3 years now, this will only be my second time seeing my neurologist. The first and only time I have seen him as a patient was when he diagnosed me about three years ago.

Now, I am looking into meds, specifically the Clonidine patch, that worked so well with so few side effects for my cousin. I’m nervous but also hopeful. What would it be like to lay down in bed to sleep and be still? I have never felt that feeling, and I there is a small part of me that holds the hope that I may soon feel that — only a small part, though, because I don’t want to get my hopes up if it doesn’t work out.

I will update you guys soon on how my neuro appointment goes. On a side note, my newest decision as of the moment is that I want to study to be a pediatric neuropsychologist who works in a hospital setting with children who have either epilepsy, traumatic brain injury, brain tumors or neuropsychiatric/neurodevelopmental disorders.

Adult Onset Tourette Syndrome: The best tics

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog who this year, at age 21, was diagnosed with TS.

WARNING: This post is designed to show what living with tics, Tourette Syndrome and coprolalia can be like. However, some of the language in this post is quite coprolalic and very offensive, so please proceed at your own risk. Teens4TS and NJCTS are not responsible for, nor do they condone, any of the content in this post.

“Bath-time with the boogie monster!”

“Hitchin’ a ride on the pleasure wagon!”

“There’s no hope for the Jews!”

“Peanut gravy shoes”

“Make me a sandwich!”

“Make me a baby!”

“Nigger in a beard!”

“Slippery Fish!”

“Kippers in slippers…”

“I’m a llama!”

“I’m an alien!”

“Vagina-face monologue”

“Fanny-hole dubstep!”

“I’m gay but I like tits too…”

“There’s a marmoset in my knickers!”

“Liam Neeson has pubes on his arms”

“Liam Neeson is secretly gay!”

“Seth Rogan has aids”

“I’m wearing a bra and it’s made of cheesecake”

“Cat wanker!”

“Mary Berry is hiding in our toilet”

“I valet pigs for a living”

“Pig valet, only 50p!”

“The world is a big place…full of gypsies!”

“Arsenic in the roast”

“Sausages are from the Netherlands. Period.”

Focus on the people who truly care about you

Well the girl I met on campus who also has TS hasn’t messaged me back. I don’t think she will, which is a little disappointing just because it would have been really neat to get to know her better. She seems like a really neat person, but I just don’t think she is interested in getting to know me better right now. Oh well.

I have my camp family and my cousin, and that’s more than enough for me. I will see my camp friends very soon — in less than two months, which is so exciting! To know that they are here for me is always the best and to know that I will have an amazing time at camp next year, too, with my cousin there as well is something I am really looking forward to!

Maybe sometime the girl I met on campus will talk more with me later, or maybe we somehow will get to know each other better … maybe she just needs to think about it for a little while. I don’t know what she’s thinking or why she isn’t wanting to be open/why she doesn’t want to respond to my message, but I am going to try to let it go — which is hard because of my OCD, but I am really going to try to.

I have people in my life who love and care about me, I have amazing friends who care about me, too. I just have to think about them and things will be alright.

Making friends can be very hard in college

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus, too. Her tics are more mild than mine, and she told me she doesn’t really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state’s TSA’s.

She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how I’m a counselor at Camp Twitch and Shout, hoping she would be interested, but she said that if she ever went to camp she would come home crazy.

Which is true — I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level. Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes.

I told myself I wasn’t going to message her on Facebook afterward because I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn’t help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD …

Anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person renegades of the fact that we both have TS, but I think it’s probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one-on-one, even though we are both on the disability awareness committee and both have TS.

I guess I feel this way because I have been feeling pretty low lately and don’t want to get my hopes up. I miss my two best friends who of course go to different colleges than I do. I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college.

I feel like a lot of my friendships here can be very surface level and like I can’t talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness and understanding, and the ease of making friends that I had at camp. It’s just not that easy here at college. It’s hard.

Tourette’s keeps fighting!

I haven’t written a post on here for an absurdly long time. I think that’s because everything was sort of just going quite well, and my tics had been really on the down low for ages. Quite frankly, there were no incidents to spark the inspiration for a post.

Now the fact that I am here again shows that nothing lasts forever, and my tics for the last week have been worse than I ever remember them being, even before I was on tablets! Quite annoyingly this happened as I was talking to some friends and said, “Yeah, my tics have been really quiet recently. It’s great!”

Tourette’s clearly didn’t want to be forgotten about, so two days later in a (tutor-less) drama tutorial I was twitching badly, hitting myself in the throat and saying my new constant vocal tic: “Achoo!”. But then, out of nowhere, I dropped the f-bomb. I didn’t know what to do. My group giggled, and I did initially because it was odd, and I don’t have coprolalia but this incident begged to differ.

Later on our tutor actually came to try and offer us some guidance, and I was still ticcing away, not subtly punching myself in the neck or face, and again accidentally swore. My tutor then just said “Language!” in a condescending, exasperated tone. And that was that.

I left the tutorial (luckily I had been leading them outside where I drama group wanted our performance to start with another girl, so she stayed and I ran away) and was left as a mess if tears wondering what on earth I was going to do.

Luckily for me, the small group I am working with for drama are absolutely lovely and gave me hugs and made sure I was OK (one even went with me to sit in a toilet while I calmed down), and they all seemed completely baffled that a tutor that I have had for over a year could even consider saying that to me. Continue reading

Adult Onset Tourette Syndrome: Suppression

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog who this year, at age 21, was diagnosed with TS.

I’ve started to realize lately how much I suppress my tics pretty much all of the time, and how tiring it is. Suppressing a tic is like suppressing a sneeze; eventually it’s going to happen, so you’re just delaying the inevitable.

When I’m driving in my car (I’m still not sure if this is legal yet or not) I let it all go, and it feel fantastic. This is usually because I’m driving to or from work, where I HAVE to suppress it, so I’m either wearing myself out beforehand or letting it out after. But still, I feel like I never take time to be completely myself in my free time and time with my girlfriend.

However, nowadays small things have been seeping out, as I have said. The coprolalia in parts as well as more painful urges. I’d be interested to see what it might be like to spend a full day with myself as I naturally am, and see how it felt to deal with the full onslaught.