How CBIT has helped me and my tics

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
  • Pouting lip
  • Slight raising of lips into fast smile
  • Sticking tongue out
  • Chomping teeth
  • 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

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21-day fitness challenge

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.

NO CHILD SHOULD BE SECLUDED!

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.

 

I’m still at it!

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).

What Tourette has taught me

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.

Hiding out, the winter blues & a nice boost

I got super busy planning the wedding that I almost forgot to tell you all about it! Even though I had a whole year to plan, I, your typical procrastinator, ended up doing most of the hard work at the last minute. I began to freak out a bit when we came to the week of the wedding and I thought the entire thing was going to be a disaster, but with some help from some wonderful friends and family, everything went off wonderfully. The wedding was beautiful. Everyone absolutely had a blast at the reception.

Then, we went to Kentucky Lake for our honeymoon, which was absolutely gorgeous, especially with the trees just starting to turn colors and the beautiful fall weather. It stormed at night, which was just amazing because I sleep so well when it storms. When we got back, there was so much to clean up and deal with from after the wedding. There were things we had missed while we were gone. It took us a little bit to get settled back in to everyday life after having an entire week to ourselves.

Then came Old Man Winter. Winter can be a beautiful season. For some, however, Winter can be a difficult season. The Winter Blues turn into some major Winter Lazies. I’m not trying to make excuses. I’m just stating what is a fact for some people, including myself. I don’t like the cold. I enjoy a snow day or two, but not being cooped up in the house for days. I don’t want to get out in the cold, but then I feel isolated at home.

This past week gave us a glimpse of something entirely different. We got a taste of spring with a few warm days and a lot of sunshine. In the midst of a week where I wasn’t sleeping well and my confidence in myself was running short because of the endless tasks I was not accomplishing, the nice weather change was a beautiful reminder that better days are coming. Life has ups and downs. We just have to push through the low times and make it to the better days that are waiting for us up ahead.

I’ve been using the boost I received this week to work on and finish projects I have started. I’ve taken care of a lot of daily tasks that I have made excuses for not doing when I should have.

Another reason I have enjoyed this break in the cold weather is because even though I have had trouble sleeping this past week or so, I have felt so much more like myself than I have been feeling lately. I don’t know how to explain it. It is such a nice feeling, though. I kind of feel like I’ve been on autopilot the last month or two and suddenly I woke up feeling refreshed, even though I also felt quite sleepy.

I guess the point of this post is to simply say, “Hey, I’m still here. I’ve been hiding out a bit because I’ve been running low on fuel, but I’ve gotten a nice boost lately. I am hoping it is enough of a boost to keep me motivated and moving forward at a bit of a quicker pace than I have been.”

I also wanted to give an example of how life is constantly moving, even if you feel stuck in a situation or season. It seems cold and bleak at the moment, but it won’t always be that way. There will come a break in the weather. There will be warm, sunny days that will give you a boost to tread on. You may not be able to see it. It may not come when you want it to. It will come, though, when you need it the most.

Talking to teens about TS is a blast!

On January 20, I delivered two presentations to more than 150 seventh-graders at Memorial Middle School in Fair Lawn! I talked a lot about how my life has been affected by Tourette Syndrome and how it has been a big part of every aspect of my life. I have been one of NJCTS’ Youth Advocates over the past several years, and I love doing it!

My presentations have been taken in by more than 1,000 young minds, all of whom know more about TS today — and that’s what it’s all about, awareness and advocacy! Here are some pictures from January 20:

Happy Valentine’s Day!

Happy Valentine’s Day everyone! What are you doing to celebrate? I’ll be spending Valentine’s Day with my amazing boyfriend who accepts me, tics and all. Although I haven’t been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn’t change his opinion about me.

Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said, “Of course they like you! You’re so laid back and sweet. You’re the kind of person who a child would naturally feel comfortable with and open up to”. I so appreciated his compliment! It made me feel great and so special. 🙂

South Jersey teens with Tourette Syndrome train as youth leaders

NJCTS Youth Development Coordinator Melissa Fowler, M.Ed., leads South Jersey teens in leadership training at Virtua Health and Wellness Center in Voorhees on January 31.

Teens in South Jersey are ready to reach out and help peers and health-care professionals understand the complexities of life with Tourette Syndrome (TS).

TS is a neurological disorder characterized by involuntary sounds or movements known as tics. In addition, the majority of people with TS also have an accompanying disorder like ADHD, OCD, depression or anxiety. As many as 1 in 100 Americans show symptoms of TS, but TS is often misdiagnosed and misunderstood by the medical community.  

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is working to combat stigma and improve diagnosis through its Education Outreach Program.

“People living with a neurological disorder understand the world in a very unique way,” said Faith W. Rice, NJCTS executive director, “They can describe life with TS in ways that are having a profound effect on the community, healthcare providers, peers and educators – putting a face on an often misunderstood disorder.”

On January 31, 10 local teens and their families gathered at the Virtua Health and Wellness Center in Voorhees for an NJCTS Youth Advocate training session.

“There are families in this part of the state who are struggling without the proper diagnosis and appropriate treatments,” said Rice, “The teens we work with, because of their challenges, have an understanding and compassion far beyond their years.”

The goal is to produce teen advocates who will represent NJCTS in peer in-service trainings at local schools and will present information about TS to health-care professionals. The NJCTS Patient-Centered Education Program trains Youth Advocates to attend hospital grand rounds sessions and educate resident physicians on how to identify and recognize patients with TS.

“I now feel like I have the power to help people with TS on a larger scale,” said one participant, who chose to remain anonymous. “The training helped me realize how much more I can be doing.”

“These teens are uniquely talented, poised and capable of delivering a message that is already making difference across our state,” said Rice, “Our hope is that we will contribute to more accurate diagnosis and a safer environment for kids who are living with TS and other neurological disorders.”

To learn more about Tourette Syndrome, and the programs and services of NJCTS, visit www.njcts.org or call 908-575-7350.

Haddon Township (N.J.) High School students learn about Tourette Syndrome

Faculty members of Haddon Township High School and student members of the school’s Psychology Club devoted time on February 2 to learn about Tourette Syndrome.

Known also as TS, Tourette Syndrome is a neurological disorder characterized by uncontrollable sounds and movements known as tics. Even though as many as 1 in 100 Americans show symptoms of the disorder, it’s still frequently misdiagnosed and misunderstood.

The New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) Education Outreach Program offers school in-service presentations for faculty and students. For educators, the focus is on identifying and accommodating students with TS and its co-occurring disorders including ADHD, OCD, depression and anxiety. Students are given a lesson in acceptance, anti-bullying and empowerment.

NJCTS Executive Director Faith W. Rice is grateful for the invitations to present at schools throughout the state. “Awareness and training go a long way in creating understanding of Tourette Syndrome and compassion for those who are living with it,” she said.

“Even if a teacher or classmate hasn’t met a student with TS yet, chances are likely that they soon will,” added Rice. “Our presentations are taking away the stigma of this disorder, and by doing we’re making schools a safer place for kids with TS and other neurological disorders.”

NJCTS School In-Service presentations are delivered by master’s level educators with (often personal) experience assisting students with Tourette Syndrome. For more information about the Education Outreach Program, or how to arrange a presentation for your school or club, visit www.njcts.org or call 908-575-7350.