CARE for Tourette Syndrome Act reintroduced by New Jersey Senator & Congressman

Congressman Albio Sires and Senator Bob Menendez have reintroduced the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act to expand and further coordinate efforts towards research for Tourette syndrome.  This bill would promote activities at the National Institutes of Health (NIH) aimed at combating and diagnosing Tourette syndrome.

“Tourette syndrome continues to be a misunderstood disorder that is too often stigmatized, I am eager to reintroduce legislation that will work towards helping the lives of those affected by this syndrome,” stated Congressman Sires. “While symptoms can be suppressed overtime, too many individuals, particularly children, face the everyday challenge of trying to manage tics whether at school or in various social settings.  Expanded and collaborative research can teach us more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by Tourette syndrome.”

“Today, we reintroduce the CARE for Tourette Syndrome Act to reinforce our commitment of increasing awareness and attention to combat this condition,” said Senator Menendez. “This legislation aims to expand our research efforts into this commonly misdiagnosed and misunderstood disease, allowing us to provide families and individuals with TS the security and peace of mind they desperately need – knowing we will continue to build on the progress already made at research centers like the one at Rutgers University, to better the lives of those it affects.  I look forward to working together with both the House and the Senate to find solutions that ensure this important bill is able to become law.”

Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics.  The NIH estimates that 200,000 Americans suffer from the most severe form of Tourette syndrome, while as many as one in 100 exhibit milder symptoms such as chronic motor or vocal tics.  Although symptoms continue for many through adulthood, the disorder generally peaks in severity during childhood.

Specifically, this bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome, including the availability of medical and social services for individuals with Tourette syndrome and their families.  It would also instruct the Secretary of HHS to award grants to public or nonprofit private entities to establish new Collaborative Research Centers focused on Tourette syndrome research.  Such Centers would be established on a regional basis, and would conduct research, including investigations into the cause, diagnosis, early detection, prevention, control and treatment of Tourette syndrome.

Faith Rice, the executive director of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), said the bill would bring added awareness to the disorder and could provide vital services to those coping with Tourette syndrome nationwide.

“It’s a population that continues to suffer from misdiagnosis, misunderstanding and the tremendous stigma that’s associated with Tourette syndrome,” Rice told The Jersey Journal. “This puts a serious light on the disease, the disorder, and an awareness that we certainly could not create on own.”

Established in 2004, the Somerville, N.J.-based organization is the nation’s first center of excellence for Tourette syndrome and a loose model for what Sires and Menendez hope to replicate across the country. United States Men’s National Team goalie Tim Howard – a North Brunswick native who suffers from Tourette syndrome – sits on the organization’s Board of Directors.

Happily Ticked Off — The Book, Part 6: Chapter 3

At long last, here is Chapter 3 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

TOC

Chapter 3 — ScholasTIC

Your TS Child (And you, freaked out mama) 

Will Surive Grammar School

Five Years Later

Fourth grade started out like third grade. It had only been three weeks and I’d been stopped by the teacher three times. The first incident was innocuous enough.

“Mrs. Frazer!” Nicky’s teacher, Chris, called to me with a smile.

I internally kicked myself. “All this could have been avoided if I’d picked him up in the carpool line. This thought was quickly replaced with, “Just because you avoid an issue doesn’t make the issue go away. It just prolongs it.”

I had one more thought that went something like, “Stop talking to yourself and pay attention to the teacher- ooooooh, a hummingbird!” at which point I directed my concentration where it belonged. Turns out, if only Nicky had done the same thing, I wouldn’t be standing in the blue door frame of an elementary school room on a Friday afternoon.

“Nicky had a hard time focusing today,” he informed me.

Last year, upon hearing similar words from his third grade teacher, my face dropped like a bad L.A. facelift. I was crushed. Four years into his TS diagnosis, his tics were still pretty minimal. With his penchant for pink umbrellas and impromptu standup routines, I knew he’d never be an academic soldier, dotting his i’s and crossing his t’s with laser like precision. But I was still holding on to the hope that Nicky’s eccentricities wouldn’t mark him as different.

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“He just can’t control it”

My son, almost 11, was diagnosed with TS about 2 years ago. Looking back, it had been going on for about 2 years prior to his diagnosis with symptoms of sniffing, throat clearing, etc.

Everything became clear during a travel baseball game when he was on the mound to pitch. He could not control his head and neck, except during the actual pitch. High anxiety situations and fatigue provoke his tics.

Currently, the tics are controlled with a low dose anxiety medication. BUT the behavioral characteristics of a pre-adolescent, pre-puberty, pre-teen is our main concern at this time. It is exhausting to manage! Struggling with dysinhibition, oppositional defiance, rage, etc.

What is breaking my heart at this time is the fact that he is a really good kid, (straight A student in high-ability classes and manages his time with sports) and how hard he is working and fighting to keep it all together all day — only to release his wrath when he gets home on his little brother and sister and parents!

I can tell that he knows what is going on, but just can’t control it.

Happily Ticked Off — The Book, Part 5: Chapter 2

At long last, here is Chapter 2 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

TOC

Chapter 2 — CinemaTIC

Tourette Syndrome – Movie Style!

If Tourettes’ was your movie, what genre would you write? Whatever you choose, be prepared for lots of action, drama, tears and laughter. 

Selling a movie isn’t much different than being handed a Tourette’s diagnosis. Both involve stories of heartfelt love, drama and unpredictability. Most people have a general idea of what might be involved to proceed, but when push comes to shove, no one is really prepared for all the twists and turns.

What path does one take?

What people do you need to speak to?

Do you have to spend a ton of time and money to get great results or is it just one giant crap shoot? And really, like the script itself, is there a happy ending?

It occurs to me that despite big talk about loving the adventure of movies and parenthood, everyone feels the most safe and satisfied when they can count on the big shiny finale. Give us happy bows and Happy Meals. Let us get fat on security and hold a bit tighter to our overpriced gallon sized Diet Cokes through the scary parts, because at the end it’ll be worth it. That theme song will blare and the credits will roll.  Boy that was sure scary there for a while, but look how great it all turned out. And that heroine sure had great hair the entire time – even during the knife fight.

The problem with tics is that you can’t count on that perfect happy ending wrapped up with a bow.  There are millions of ways to manage Tourettes, and with a personal plan, created through trial and error, oftentimes one can suppress the symptoms a good deal, but there is no perfect solution.

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My 17-year-old son needs help

HELP!!! My 17-year-old son had Tourette Syndrome onset about a year ago and hasn’t been “diagnosed”. He is miserable and confused and has stopped going to school. He has isolated himself socially and has just given up. He will not express gimself to doctors for the correct diagnosis. Can you guys show him some love????

Please, he is a great guy who has tranformed before my eyes. He feels alone and trapped and will not talk about it at all …. and me and his sister are the only ones who have encountered his tics. Thanks!

52 Weeks of TS: Week 38

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 37 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

My life is a waste of time. Now don’t jump to conclusions and take that the wrong way. The reason I’m saying this is because I waste so much time in my life. I don’t think many people realize how much time is wasted having TS. I often wonder how much more free time I’d have if I wasn’t so focused on ticcing, or suppressing my tics, and don’t even get me started on how much time I waste with my OCD’s. Having TS is a full-time job, and I’m not being paid for it. I need to go to the human resources department and find out where my paycheck is.

The reason I am talking about wasting time has to do with a big event I was part of this week. Yep, I’m talking about Tic-apalooza. I packed all my stuff a week before leaving because I’m so OCD, but because of my OCD, the night before I left, I had to unpack all of my stuff and repack it just so I was sure I had everything I needed.

I was leaving the safety of my home, and going somewhere where I knew I was not going to be able to run to the store and get anything I forgot. Yes, I made sure I had my basic stuff; clothes, sleeping bag, etc. However, that was not my main concern. I needed to make sure I had enough hand sanitizer, Lysol, tissues, and hand wipes. I was headed to the wilderness with a bunch of kids, I was not messing around, and no germs were getting in this body.

As for Tic-apalooza, what can I say? I’m somewhat left speechless. It’s hard to put this weekend into words, but I’m going to try. Here’s a few. Amazing, astonishing, remarkably incredible, miraculously mind-blowing. I guess you could say I had a wonderful time. I was having anxiety about venturing to this camp, and worried about spending time with so many kids, and dealing with my OCD’s, but I went and felt completely at home. There were over fifty campers with TS, and it was such an inspiring weekend.

There was no hesitation in my mind that volunteering to be a counselor for this event was the right thing to do. However, I was concerned because this was the first time I had been a camp counselor. In fact, this was the first time ever going to camp; I never had the opportunity to go away to camp as a kid, which brought on more excitement and trepidation.

It was such an incredible experience to spend the weekend with these brave fifty kids. Friday morning when I arrived at the camp, I was excited when I saw numerous hand sanitizer machines all over the mess hall. Even though I brought enough for the whole camp, it was a great feeling to know that they had some all over the camp.

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5 Ways NOT to Help a Friend with Anxiety Attacks, part 3: Let’s talk it out

5 Ways Not to Help a Friend with Anxiety Attacks

If ESPN broadcasted anxiety stats instead of sports scores, this would be the standing in my house:

Anxiety-1:Brittany-0

I’m hitting the point in this pregnancy (27 weeks) where sleep is greatly desired, but I’m waking up more than I’d like. Last night I only got five hours of sleep before simultaneous heartburn, hunger, and the siren call of the bathroom got to me. After breakfast, I laid back down and tried to take a nap. Instead of passing out, however, I realized my breath was coming faster and faster, and my heart rate began to climb. Ever aware of the fact that what happens to me affects my baby, I had my husband take my pulse. I clocked in at 124 heartbeats per minute.

It only took a moment for me to really figure out what was going on. An anxiety attack was calling, and I’d left the door wide open. After a cautionary trip to the hospital last week to check on Jelly Bean, I’d decided to relax a bit until everything returned to normal. And while it was a good decision (in my opinion), it also meant I didn’t get nearly as much exercise as usual. (And exercise is my Numero Uno natural anti-anxiety “medication.”) Of course, there was also the song I was going to sing in some dear friends’ wedding this afternoon, and the fact that we’re moving in about two weeks, and I’m nowhere near packed or ready.

In short, there were lots of reasons for the anxiety to creep in.

My husband had a decision to make when I told him the reason for my crazy heart rate. He had to choose his words and actions so that they helped me overcome my anxiety, rather than making them worse. And thankfully, he didn’t choose any of these.

Today is the third of 5 straight Mondays in which we are going to discuss 5 ways NOT to help someone having an anxiety attack. If you can follow these 5 rules, you may just find yourself a new best friend. Here is rule No. 1. Here is rule No. 2. And following is rule No. 3:

Force them to talk it out

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New Jersey families: Have a high school senior with TS? Have them apply for a scholarship!

The NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to annouce the 2015 scholarship awards to graduating New Jersey high school seniors diagnosed with Tourette Syndrome.

The NJCTS Children’s Scholarship Program was established in 2004. Over the past 11 years, NJCTS has awarded more than 200 scholarships to graduating high school seniors in every corner of New Jersey. In 2014, 19 students were awarded scholarships by NJCTS.

To view the 2014 winners and other past NJCTS Children’s Scholarship essays, please visit the Teens4TS blog. A scholarship award recipient must:

  • Download/print out, complete and return the application form by May 1, 2015
  • Be domiciled in the State of New Jersey
  • Be a high school senior in a private, public or home school
  • Be planning to attend a college or trade school on a part-time or full-time basis in Fall 2015 
  • Have a diagnosis of Tourette Syndrome
  • Provide a record of grades from 9th grade to present
  • Provide letters of recommendation from a member(s) of his/her school staff (such as teacher or guidance counselor), coaches (who have known you for four years or less) and/or community people who know you well (church or other community members)
  • Submit an essay of 1 to 2 pages, typed and double spaced, describing how Tourette Syndrome has played a part in your life. You may also submit media (pictures, video, music) displaying your talent(s) no more than 5 minutes in length.

The winners will be selected based upon academic achievement, community involvement and accomplishments as an individual living with this challenging and complex neurological disorder. The amount of the prize, criteria and selection of the winners shall be in the sole discretion of NJCTS, which reserves the right to determine the amount of the award and whether to award it based upon the applications.

Winners will be announced in June following a review of all applications by the NJCTS Children’s Scholarship Committee, they will be notified by mail.

The winner also must agree to having his or her essay published on the Teens4TS blog; appear in local media publications and on www.njcts.org, if applicable; speaking to local students about Tourette Syndrome, if deemed necessary; and attending meetings with state and federal legislators, if necessary. Winners also may have NJCTS present the scholarship award at their school’s year-end awards assembly/banquet.

Discrimination, Bullying & Isolation In A World of Inclusion

This is going to be one of the hardest articles I’ve ever written. The reason for this is because it is deeply personal. I write about bullying and discrimination often on my own blog, and I understand it all too well. I see it everyday, in all walks of life.

“People fear what they don’t understand and hate what they can’t conquer.” ~ Andrew Smith

Everyone in this world has bullied or been bullied at some point in their lives. Any time you exert will and force on someone to get a desired outcome, this could be defined as bullying. I am guilty of it. In my quest to have the perfect IEP for my son, I have expected knowledge and wisdom of my son’s disabilities greater than my own.

This has been my life for the past 9 1/2 months. I didn’t even realize I was doing it until someone said these simple words: “You’ve had two years to understand your son’s Tourette Syndrome. His teachers have had eight weeks. And I’m sure you don’t fully understand it at times.” In a very odd way, my attempts at advocacy for my son in school can be viewed as a type of bullying. I admit I have been forceful in my attempt to do the best for my son, and at times the lines may have blurred between right and wrong ways to go about that.

“A lot of people are afraid to tell the truth, to say no. That’s where toughness comes into play. Toughness is not being a bully. It’s having backbone.” ~ Robert Kiyosaki

Those words affected me in a huge way. My son’s teachers are with him seven hours a day. When I say teachers, I mean the entire school staff, whether they are certified or not. These are people who have been placed in an educational environment to help children succeed. They have hundreds of decisions they need to make on a daily basis. We expect them to make the right choices constantly. But they can and do make wrong ones. They are only human.

Unfortunately, teachers are put in impossible situations all the time with disabled students. When I hear about my son calling out in class, or being disruptive, I sometimes wonder what would happen if a non-disabled student did the same thing. Chances are, with my son’s IEP, he would receive a gentle warning followed by a positive reinforcement statement. For a student without disabilities, the reaction may be different. Is this fair to this type of student?

“I know the world isn’t fair, but why isn’t it ever unfair in my favor?” ~ Bill Watterson

This makes me question humanity itself. We will give one type of treatment to a group of people because we are required to, but not another. Some teachers will utilize the techniques they see in an IEP with the entire class. But for those who don’t, I can see how some students and parents could see this as a type of favoritism or preferential treatment. I think, in an odd way, this creates a bizarre type of resentment against students with disabilities.

Students certainly pick up on it. I can see the conversation already: “Johnny threw a pencil and he was talked to and nothing else happened. When I did it, I had to go to the principal’s office.” For this student, something complex happens. He sees Johnny doing things and gets away with it, but for others they get in trouble. Students, especially those in elementary and middle school, are shaped by those around them. They expect everyone to get the same treatment.

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52 Weeks of TS: Week 37

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 36 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I’m sick! I find it funny how a couple of weeks ago I was talking about people with TS having a poor immune system, especially if you have anxiety disorder. Anxiety disorder can take a huge toll on your immune system, and here I am sick once again. Now besides my normal everyday pain and body ache, I have the ache from being sick.

I hate being sick, but there is a small part of me that likes it. I’ve said this before, but when I’m sick, my tics are very calm, and there’s not much anxiety. I think my body is so focused on fighting the infection, that it somewhat shuts down. It’s nice. My brain is quiet, and my body is somewhat still.

Next week I leave for Tic-apalooza and I’ve been so excited about going, but as the event come closer, my anxiety is building. I think many people that have TS deal with confidence issues. Even though I’m going to be surrounded by people with TS, I’m dealing with self-confidence issues. I know I’m going so I can help. I’m going to be a camp counselor, and I need to be strong and show these kids that we cannot let TS hold us down, or hold us back, and I have to keep that in mind.

I know in the past I have let my social anxiety get in the way of doing things, but this week I did fight my fears. I said last week that I had a wedding to go to this week, and I sucked it up, and went. It ended up being a beautiful event, and a great time had by all. I was glad I could crawl out of my shell and be a part of my friend’s special day.

I saw a few friends that I had not seen in years, and ran into an old client whose son I know has TS. She had just sent him off to college, and we briefly talked about treatment options they have been taking. She was telling me that they had tried many different things, but had recently gone to a Chinese herbalist who had put him on a regimen of herbs for muscle spasms. She went on to tell me that of all of the different treatments he has been on, this one has worked the best, many of his tics had disappeared.

I have heard many things about Chinese herbs working for some people with their TS. Is this a possible answer? Does it help with just the tics, or could it help with all the underlying disorders, too?

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