CBIT for Tics

Today was my first day meeting with the CBIT therapist I'm going to work with. My neurologist recommended I try CBIT for tics before trying a different medication. I don't know if it's going to help, but i'm sure hoping so! I can tell you one thing, it was so nice to not have to educate the therapist about TS like I usually have to do! She was teaching me new things instead of the other way around. She is very kind and I really like her and her approach. I'm cautiously hopeful! A reduction of my tics would be so nice :) 

To learn more about CBIT, click here: http://www.tsa-usa.org/imaganw/CBIT_TSA_Brochure_English_web_version.pdf 

An Update about CBIT and how it has affected my tics after 8 months of therapy (on and off) (this update is from April, 2015): 

CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don't get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe. One thing that's helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn't. We've had to make a lot of adjustments to the original CBIT protocols because #1 paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT). So we have had to get rid of that part competently, and also re-arrange a lot of other things as well. With a lot of tweaking though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication i've been on and the best part is NO SIDE EFFECTS!

Now that's not to say some of the tics i've worked on with CBIT will never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with a lot less tics! I'd say that's pretty darn good! The ones I am most happy i've targeted with therapy of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.

 I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.

I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing responses. 

"Stand Up for What You Believe in, Even if it Means Standing Alone"

This is a post that I originally wrote in 2011. I decided to re-post it today because of a conversation I had with my mom about the night that I wrote about. I also wanted to re-post it for many of my campers from camp twitch and shout. This is something I wrote when I was only a year older than most of them! I can't even believe that! I might end up re-posting some of the other things that I wrote when I was around their age too. I think that might be interesting :) 

November 1st, 2011- 

"Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me." 

July 29th, 2014- 

Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

Nervous about Starting School Again....

Had to lay down for about 45 minutes to support my head against the mattress while having non stop vocal tics, head and neck tics, punching tics, and full body tics. It's been quite a while since that has happened. I think one of the reasons is because i'm getting nervous to start my Junior year of college. I still have 4 weeks of summer left, but my brain always seems to want to jump ahead......I guess i'm nervous about the first few weeks of school which always tend to consist of a constant stream of explaining Tourette's to the new students living in my dorm, my new classmates, and new professors. While most of the time I actually enjoy the opportunity to educate others about Tourette's, the first week of school I end up explaining myself and educating others around me so much that I just tend to get a little frustrated with it. Also even though I've done this so many times before, I still get nervous being in environments with new people who don't know about my tics yet.

Even though i'm nervous about it, I know it will be easier this year. After my second year of being a counselor at camp twitch and shout, I know I'm more confident in general, even better at talking openly and confidently about my Tourette's, and just like last year I know I have my camp family behind me who all know exactly what it's like to live with TS. Also I have some great friends from last year who will be living with me again this year who will be there to support me. Regardless of all of this though , i'm still nervous and can't seem to shake the emotions....

Camp Twitch and Shout Post #4: How Camp Has Helped My Parents Accept My TS

As those of you who have been following my blog know, when I was diagnosed with TS, my parents were in complete and total denial. They were in the room with me when the neurologist told me that I have Tourette's but they didn't believe it. They didn't believe that their daughter could have something like this. It was other people and other people's children who were diagnosed with things like this, not them. 

So their reaction to tell me not tell anyone about this diagnosis, that the diagnosis was probably false and the reason I had tics was probably because of my OCD and that once I went on OCD medication my tics would go away. They choose to ignore the fact that the head of the movement disorders clinic at a prominent university was convinced after talking with me for 15 minutes that I have Tourette's, the fact that my first cousin was diagnosed with Tourette's as well (unknown to me) about three months before, the fact that pretty much everyone on my dad's side of the family has OCD, and the fact that the Tourette's diagnosis explained pretty much everything that had been going on with me since I was three years old. They continued to ignore these facts until I came back from my first year as a counselor at camp twitch and shout. 

Camp is the thing that really made the difference with my parents accepting that I have TS. Camp gave me so much more confidence about talking about TS that I just started talking about my TS around my parents a lot more when I came back from camp. I thought my parents would never accept the fact that I have TS, but now coming back from my 2nd year as a counselor both my parents accept and beleive that I have it, are so supportive and proud of my involvement with camp and the general TS community (i'm on the board of the TSA and do research on TS as an undergrad assistant), and my mom and I frequently talk about it using the actual word Tourette's. 

At first my mom wasn't even able to say the word, and now she gives me research suggestions, uses the word freely and openly with me, and last night we watched the SBS dateline documentary about camp together and she said she really enjoyed watching it.

I think what really made the difference is camp, talking about camp with my parents, and reaching a point where I felt I no longer had to prove to them that I had TS. I knew I had TS and no one else needed to believe that besides myself and my neurologist for it to be true. Then somehow the acceptance came naturally. My parents just needed time, exposure to the concept, and quite a lot of education about what Tourette's really is.

All that being said, they aren't perfect. They continue to tell me to be very careful about who I tell about my Tourette's. They just want the best for me and don't want anything to hold me back in life, and I understand that. They don't want me to openly admit I have Tourette's publicly or on the internet (hence the pen name for my blog, because if my parents found this blog I would never hear the end of it). I feel confident that if other people know I have TS, they won't view me any differently. Again and again this fact is proven to me. I tell people in my life on a regular basis that I have TS, because, well,  it makes my life so much easier for them to know what's going on when I start making noises and twitching a bunch in front of them. Almost everyone in my life knows I have Tourette's, and they still treat me the exact same way as they did before they knew. I have so many friends who are so supportive about my Tourette's and who accept me for who I am. They love hearing about camp, openly ask me questions, and joke with me about my tics to lighten the mood when my tics are bad. I feel so lucky to have such an amazing support system and I am so glad that slowly but surely thanks to camp twitch and shout my parents are coming on board :) 

Camp Twitch and Shout Post #3: Feeling Proud of My Campers :)

Camp Twitch and Shout. How in the world do I begin to write about this place and express even a fraction of the way I feel about camp? All week I saw my campers growing into themselves, stepping out of their comfort zones, accepting who they are, and for some of them being able to be free of judgement for the first time. I loved so much that every single person at camp saw them as so much more than just a person with Tourette's. The week of camp is such an incredible gift for these kids and I feel that I am a part of that. Every time I saw one of them stepping out of their comfort zone, making new friends, relating to the others campers, or opening up I felt so proud.

At the same time I found it difficult to watch them have a hard time with their tics, anxiety, OCD, sensory issues, or other associated conditions because I know exactly how it feels. I'm so much better at managing my tics and associated symptoms than I used to be. At 15 and 16, my tics, OCD, and anxiety were at their worse and seeing my campers go through what I had to go through was difficult at times. Because I know exactly what it was like to be in their shoes and because I have moved past and conquered many of the issues I dealt with at their age, I felt like I was able to comfort them and help them through their issues in a special way. I was able to say to them the things I wish someone had said to me when I was going though the same thing at their age.

So many of my campers and the things they said to me brought me right back to when I was right in "the heat" of my disorders. They brought me back to the time when at 15 I spent time away from my parents and became so distressed by my tics and OCD that I had to go home early. They brought me back to when my swallowing tic was so bad that I couldn't sleep for days because of the pain and obsessing it caused and when my OCD made it so difficult to do simple things such as walking down stairs, drinking out of a water bottle that accidentally touched the ground, letting other people use my lap top, and touching door knobs and other people's hands because of the worries and obsessions my OCD would put in my head. It was difficult to be brought back to this time, but at the same time it helped me to share my story with my campers and motivate them to keep pushing forward through the hard times in such a personal way.

My campers really appreciated hearing my story, and hearing the things I went through at their age. First of all it made them feel less alone, but also it gave them someone older to look up to who has gone through the same things they have. Seeing that I have Tourette's and the associated conditions that come along with it and am a successful college student moving towards a degree in neuroscience gave them hope that Tourette's really is not a stop sign. They also really liked hearing that I research Tourette's. A lot of kids with TS have the strong desire to either become a neurologist or somehow work with kids who have TS when they grow up so they can help others who deal with the same things that they dealt with as a kid, so I think they could really relate to the research I do and my desire to continue to research TS in my future.

I absolutely loved the opportunity to get to know all these wonderful girls! As much as I might have inspired them, they inspired me just as much if not more! I feel like I have said this so many times, but I will say it again and again and again: these kids are so strong, beautiful, and brave and I feel so lucky to have been able to spend the week with them! As one of the camp nurses said, "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life." What she said is beyond true, and it is something I witnessed again and again throughout the incredible week of camp :) 

First night of meds for RLS, Melatonin and Iron

My first night of Melatonin went well!! I fell right asleep with no tics interfering with sleep and only a few RLS movements. I don't know if this was because the Melatonin or if I am still simply more tired than usual and less stressed than usual because of summer, but we will see. Hopefully that night of amazing sleep is just a small sample of what's to come! Gosh my life would be so much easier if every night was like last night! Fingers crossed! 

Also I took my first dose of Iron for my RLS this morning! Hoping that works too! 

Restless Leg Syndrome And Tourette's

Tonight will be my first night taking Melatonin and tomorrow I will take my first dose of Iron. Both are to help with my restless leg syndrome which is yet another co-occouring condition that comes along with Tourette's. Both my brother and I have restless leg. He was diagnosed half a year ago and I was diagnosed about two weeks ago. Restless leg is nothing compared to my OCD, anxiety, panic attacks, or sensory issues, but it has been starting to interfere with my sleep. Less sleep means more tics the next day, so hopefully this new medicine regiment will help with my sleep and indirectly improve my level of ticcing during the day! Wish me luck