OK, so I promised I would write more about my experience with CBIT. 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 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 rearrange 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!
So today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my junior or senior year of high school (about 3 years ago). What I’m going to do is I’m going to paste that list here and I’m going to cross out all the tics that I no longer have.
Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let’s see how many tics I’ve gotten rid of!
- Eye rolling to upper right corners
- Fast blinking
- Hard blinking/squinting
- Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
- Grimace with mouth combined with eye blink
- Pursing lips silently
Pursing lips to make a slight and quiet kissing sound
Lifting upper lip
- Slight raising of lips into fast smile
Sticking tongue out
Opening mouth really wide (looks like a silent scream)
Twisting lips to the left or right side of face
Entire face squint (just-tasted-something-really-sour face)
- Slight neck bend to left or right side
- Neck turning which results in neck cracking
Violent head/neck jerking forward
Shaking head fast from side to side
Bending head backward
I’m starting a 21-day fitness challenge for those who want to be healthier, lose weight or get shredded! It’s only three weeks — you can DO it! I just finished my meal prep and grocery list for the FIRST week! I have two more weeks to work on. I must admit, it was hard work and I put A LOT of hours into meal prepping for just the first week — researching clean eating recipes, calculating my caloric target and counting the colored containers given to me by the 21-Day Fix Extreme Program.
Thank goodness for Microsoft Excel!!! I have an entire spreadsheet of what I’m exactly going to eat each week for the next 3 weeks and portioning the food out in advance. So Saturday I start grocery shopping and Sunday I will prepare the meals for the entire week. I’m super excited for this adventure and look forward to seeing the outcome of my health, my Tourettes, my body and my mind.
This link absolutely disgusts me. NO child deserves to be secluded. I remember when I was in elementary school with extremely severe Tourette’s. I was locked in a small room for hours and hours, left there wondering why they forgot about me. School was hard enough because my tics were so painful and harmful that I couldn’t focus in school.
As a child that went through this, I am grateful to have a supportive family — especially my mom, who decided to stay with me at school every day to protect me and ensure me that everything will me all right and that I will get the education I needed in a way that I deserve despite of my Tourette’s.
5 years post National Youth Ambassador Training in Washington, DC and I am still at it!
Following my fall semester at SUNY-Binghamton I was asked to return to Memorial Middle School in Fairlawn, N.J., to speak with the 7th-graders about Tourette Syndrome and bullying. During the back-to-back presentations, I had the opportunity to tell my TS story, as well as explain what the disorder is and why you should not bully anyone.
The students were engaged throughout the entire presentation and had a bunch of questions. For example:
- Were you ever bullied in school?
- Do you still tic?
- Do you know alot of other people with TS?
They were all shocked at how difficult it was to hold in a tic when I compared it to a scratch on their head and did not allow them to touch their heads for two minutes; everyone was squiriming in their seats.
All of the students promised me that they understood my message and that they would not bully their peers.
I encourage all of you readers to speak out about Tourette Syndrome, bullying and your own personal story. If you have any quesitons about how to get involved, please contact the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).
Tourettes has taught me to feel compassionate toward those who are judgmental and narrow-minded. It has taught me to understand that perhaps they’ve never been or haven’t been exposed much to different types of abilities — that they are only afraid of what they don’t know. It has taught me to view the world with mindful conscientious — to be gentle, caring, kind, and honest.