What's next for the federal Tourette Syndrome bill?

Hey guys, I thought I’d give you an update on my previous post.  As a recap, the amendment on the Public Service Health Act would establish regional centers across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.

Here’s the good news: The next vote for bill H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011, will come in the House of Representatives if it successfully makes it out of committee.

Here’s the bad news: Only 8 percent of bills actually make it out of committee and into the House.

So what can you do?  You can continue calling your representatives by following the instructions on my previous post!  The more support that this bill gets, the more likely it is that it is passed! Thanks for all the help, and I’ll be sure to update you guys as more news on the bill comes in.

WANTED: Teens to participate in upcoming events!

Here are a few events coming up that are associated with the New Jersey Center for Tourette Syndrome. NJCTS offers many programs and services to the TS community., many of them geared toward kids and teenagers. We strongly encourage you to check out these events and consider signing up for, supporting and/or attending as many of them as possible!

April 5: Deadline for the NJCTS Children’s Scholarship

April 5: Deadline for the Educator of the Year nominations

April 7: “Mirror Mirror” to be shown in sensory-friendly format

April 11: Webinar on classroom accommodations for those with Tourette

April 29: Tourette Syndrome Awareness Day with the Somerset Patriots

May 11: Deadline for YMCA Camp Bernie retreat applications

May 21: Dare To Dream Student Leadership Conference at Rutgers

June 8-10: Eighth annual YMCA Camp Bernie family retreat weekend

 

Taking part in a Tourette Syndrome research study

OK, I am now ready to start blogging again! I took a little break from blogging this past week because my parents were out of town, my dog was sick and I was on spring break, so there was really not much going on to blog about.

But I want to talk about my experience when I went to interview the Tourette Syndrome experts for my documentary. A Doctoral Fellow who both has Tourette and researches it mentioned to me that she was going to be starting a research study for people with Tourette ages 18 and older.

She asked me if I was interested and if I would be willing to be a part of the research study when it was all ready, and of course I said yes! So last week she got back to me and told me that the study was all ready to go, and I let her know that I was still interested. So I am all signed up to be part of the study!

There are two parts of the study, the behavioral testing and the MRI scan. I am set up to do the behavioral testing part on April 4 and the MRI scan on April 7. During the behavioral testing part, there will be pencil and paper tests, verbal response tests and questionnaires. I am a bit worried for the MRI scan because I am not sure how long I will be able to stay still. I’m sure they will be understanding, though, considering this is a Tourette study! Continue reading

Is wanting attention in class asking too much?

Today I discovered something more about myself, something I might know about but was unaware of. In school, I am studying to work with little children, and we had a course called “expression” that requires 4 hours of knitting. A couple of times, some teachers passed by to see how we were, well, knitting.

After a while, I started to notice that every time a teacher was checking my work, I started working faster and better in hopes that a teacher would ask how I’m doing or give some (positive) feedback. I was unaware of it before. And sadly, again they didn’t ask how I was feeling or give any feedback at all.

Although I’m a bit shy, I need a teacher who gives me feedback a lot and who asks if I’m feeling fine — a teacher that shows some more interest in me. Sadly, most of the students in my class are more social than I am. They talk faster, louder and more, thus automatically getting some attention.

I could use some more attention from teachers. Just asking how I’m feeling gives me an instant boost, which allows me to concentrate better and motivates me more. But today I became aware that — actually, it was not only today — I start knitting (or working) faster and better when teachers come and check on me. I’m doing this my entire life, already! Continue reading

High school seniors with Tourette: College will be just fine

Hey guys, I haven’t written in a while, I know. I have had a lot going on, with changing rooms in college, homework and classes. I just want you to know that for those who are trying to get into college, don’t worry. Try your best on your SATs and you will get into a college.

Don’t think that because you have Tourette’s you wont get into college or do good in college. You will do perfectly fine, and college students are much more mature than high school and middle school students. They will understand about your Tourette’s and you will make friends.

Of course, there are going to be those ones that will be mean, but there are so many fewer ones then in high school and middle school. I changed rooms and am roommates with one of my best friends. She helps me through my ups and downs, and I help her through hers. It’s the perfect combination.

You will figure out who your true friends are and who the fake ones are. Don’t be afraid to let the bad ones go — they don’t deserve you. Continue reading

Medication, perspective really help make life better

I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everythingI will not refuse to do the something that I can do.

~ Edward Everett Hale

Hello everyone. This week has been half OK, half not so good for me. I’ve been doing well in school so far. I’m going to four courses after having six courses at first. I’m getting there.

The not so good part of the week is that I’ve been highly depressed. I became much more easily agitated than normal. I found myself getting mad at every little thing that didn’t go the way I wanted it to. I’ve been sad with my life. I’ve been thinking about how bad my life is. But then I realized that I had been forgetting to take my Zoloft. And I didn’t have my gummies.

I’m getting back on my Zoloft, and I got new gummies last night. So I’m feeling much better today. I am more positive about life. My life isn’t that bad at all. It’s great actually. Man, the way my mind works sometimes, huh?! Continue reading

The week of ups and downs

The wisest mind has something yet to learn.

~ George Santayana

Hi everyone. This past week for me was like a roller-coaster. After my second mom’s stepmom’s friend passed, things became hard for her. She has had a lot of people that she knew die on her the past two years.

Last Monday, I decided not to do something because of a gut feeling, and my second mom became furious with me (I knew that probably would happen), and what was worse is that was on the day of dance class. The good thing is that my friends there made me laugh and feel better about life.

We all recently had a family talk, and I realized that I don’t know how to use actions to show people that I appreciate them. I’m only good with words. It is a skill that I need to practice and learn, because I was told that twice this year by two different people. I despise hurting people. It makes me feel sick to my stomach, literally. Everything is good now, but we just need to work things out with making her feel more a part of the family. Continue reading

There are Definite Possibilities for people with Tourette Syndrome

My name is Logan Kurtz, and I am 17 years old. I am the CEO and founder of Definite Possibilities, a website that gives people with any disability or disorder a place where they can feel comfortable and express themselves. I am also the creator of the Facebook page called Help Spread the Word about Tourette’s Syndrome.

Throughout my life with Tourettes Syndrome, challenges were always present in anything I did. Problems always occurred, whether I was ready for them or not.

“My son had a dormant Tourette’s gene. It became active when a psychiatrist went the easy route and decided to put him on a stimulant drug, Ritalin, when there was Bi-polar on the father’s genetic side. A stimulant drug should NEVER be prescribed when there is Bi-polar in the history. Within 36 hours my son’s Tourette’s gene was activated. That was 11 years ago.”

My mom said about me on Nov. 3, 2010. I have many stories to tell about my life with TS. Continue reading

Videos about Sensory Processing Disorder

Some of you may have read my post about Sensory Processing Disorder. If not, you can read it here. I also would like to share with you some videos about the disorder, which is a common disorder associated with Tourette Syndrome. First, check out the videos I posted on my blog, A Little Bit Different. Then, check out a few more that are on YouTube:

Video 1

Video 2

Video 3

Video 4

Video 5

 

My experience with Sensory Processing Disorder

So last week I wrote about my experience with Dysgraphia (a co-morbid condition associated with Tourette Syndrome), and this week I figured I would write about my experience with Sensory Processing Disorder. Below are two short paragraphs that help to define and describe SPD that I found on the SPD Foundation’s website.

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.

Sensory Processing Disorder can affect people in only one sense — for example, just touch or just sight or justmovement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. Continue reading