My letter to Congress about supporting Tourette Syndrome legislation

I support H.R. 146, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013. I have had Tourette Syndrome since I was 5 years old. Battling with the disorder has brought struggle throughout the years; emotionally, physically, socially and financially. I cannot express how much stress and pain I have been through (especially considering those factors make tics get worse).

However, when I started working with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), they brought new resources and knowledge that gave me hope that there would someday be a cure; I knew I wanted to be a part of that difference. Through NJCTS, I have been trained to be a peer advocate and youth advocate so I can educate people about Tourette Syndrome.

After all, the more people that know what the disorder is, the better chance that someone will find interest in the subject and find a cure. This bill is absolutely necessary, not only for this generation of kids, but for future generations as well. With the deepest respect and passion, I ask EVERY Senator and Representative of Congress to sign this bill. It may or may not affect your life, but the Tourette community depends on it. Thank you.

To join me in supporting this important bill, please visit the POPVOX website today. It’ll only take a few seconds of your time and could change the lives of so many. Thank you!

One of those days where I just hate Tourette’s

I’ve been having a rough couple of days with my tics. They weren’t all that bad for a little bit, but with the waxing and waning of Tourette’s you always know that with a period of time where your tics aren’t all that bad you also get a period of time when your tics get bad again. Sorry if this post isn’t very well-written, my brain is just fried and tired, but I still felt the need to post this.

Anyway, yesterday I was having a sensory reaction/tic — I’m not really sure what it is, truthfully — where I just scratch everywhere on my body really, really hard. I will just have this horribly uncomfortable feeling where I feel like I need to climb out of my own skin when this is going on, too, so it’s really not very fun at all.

So I’ve been itching and scratching everywhere, and ticcing A LOT, too. It’s like my body has been having a meltdown the past two days. I’ve ended up falling on the floor and writhing around quite a few times between yesterday and today because of my tics. It makes me feel really silly to be laying on the floor ticcing and squirming around. Right now, my neck and head really hurt and feel uncomfortable from all the tics I’ve been having — and all the scratching, too.

When my tics are this bad and when I feel like I constantly want to climb out of my own skin, I feel like I just can’t be very productive because every time I go to write or do homework or read I just start ticcing more, start scratching more and get really frustrated and end up having a meltdown.

I just turned in an essay that I had to write over the weekend, and I feel like the essay is just pure junk because I had such trouble writing it and getting my thoughts onto the paper. I usually am a good writer and take a lot of pride in my academic work, which is why it upsets me so much that I am turning in an essay that I couldn’t feel any less proud of.

This is one of those times where I really hate having Tourette’s. Most of the time, I don’t hate it. Most of the time, I live with it and go on with my life and try to think about all the good things Tourette’s has brought to me, such as my amazing Camp Twitch and Shout family, my work in the Tourette’s research lab and my involvement in the Missouri TSA.

Right now, though, I’m just feeling down and like my brain is scrambled and like I can’t think straight. It’s hard to think straight when you feel like your entire body is filled with itching powder and like you just want to go and get a new body — a body that doesn’t move and make noises and feel so uncomfortable like this one, a body that can handle the sensory stimuli of the outside world without shutting down and throwing a temper tantrum like a 5-year-old.

I guess trading in this body for a new one isn’t going to happen, but at least I know I’m not the only one who has to deal with this. I have much love and support from the people around me who don’t have Tourette’s and much love and support from my Camp Twitch and Shout family, and others I know who do have Tourette’s.

In the meantime, I’m using my strategies to try to calm my tics down, such as trying as much as I can to stay focused on other things, trying to keep my stress and frustration level down, and trying to get enough sleep, food and water in my system.

I also do some random things that I have found sometimes helps, such as laying under my weighted blanket, putting on comfy and loose clothes whenever possible, drinking milk to help me calm down, and putting cold compresses on my head.

Sensory question

Hey everyone! I haven’t posted in here for a while but I have a question for you guys. Do any of you feel the need to scratch all over their body (arms, legs, head, neck, etc) when you are uncomfortable sensory wise/are having sensory problems?

Right now, my sensory system seems to be throwing a fit and I have no idea why. I’m just sitting in my bed and scratching and scratching really hard on my arms, legs, neck and head. This is not the first time this has happened. Its been going on pretty much all my life.

Anyone else experience this/ have any suggestions for how to make it better?

I’m not alone in this, and neither are you

Just when I finally am starting to get over my cold, Tourette’s decides to throw in a loud squeaking vocal tic that’s already starting to make my throat sore over again … gotta love Tourette’s. My recovery from my sore throat was pretty short-lived. And this loud squeaking vocal tic sounds pretty strange.

This documentary is helping me, though. It always helps to know I’m not alone in this. Times like this make me miss Camp Twitch and Shout, though, because everyone there knows exactly what it’s like and exactly what I go through.

Applying for Social Security Disability with Tourette Syndrome

There are many symptoms that an individual with Tourette’s syndrome may suffer from that can prevent that individual from maintaining full-time work activity. The inability to work can lead to significant financial distress. Fortunately, in some cases, Social Security Disability benefits can help alleviate some of the financial stress caused by the condition.

Qualifying for Disability Benefits with Tourette’s syndrome

In order to be eligible to receive disability benefits from the Social Security Administration, you must meet the SSA’s medical qualifying criteria. When you apply for Social Security Disability benefits, the SSA will compare your condition to a listing of conditions known as the Blue Book. This publication contains all of the conditions that could potentially qualify an individual for Social Security disability benefits, along with the criteria that must be met for each condition.

Unfortunately there is no specific listing for adults with Tourette’s syndrome in the SSA’s Blue Book. Individuals who suffer from Tourette’s syndrome may, however, be able to qualify under a Residual Functional Capacity (RFC) Evaluation.

The SSA will evaluate both your physical and mental residual functional capacity. The physical RFC will evaluate your ability to sit, stand, walk, lift, climb, etc. The mental RFC will evaluate your ability to mental and emotional work-related activities such as interacting with co-workers and getting along, ability to follow direction, etc. People with Tourette’s are more likely to qualify through the mental RFC since the symptoms of Tourette’s are frequently disruptive and can have an adverse impact on an individual’s ability to interact and be productive in the work place.

Children, on the other hand can qualify for by meeting the listing for tic disorders in the blue book. The child must experience: Continue reading

Tourette’s isn’t defining me at college

Hey everyone! So I know I haven’t written a blog post or really done an update on what’s been going on with me for a few weeks now, so I figured it was time!

This is my third week of classes as a sophomore in college, and although I have been super busy with classes, friends, extracurriculars, etc., it is for sure a good type of busy and I have been enjoying these first few weeks so much!

Everything has been going really great for me. I’m enjoying all my classes, am loving my new living situation this year (since I’m living with my three closest friends in a four-person suite in which we all get singles but share a common room and a bathroom and have more of my close friends living very close to me!), and even though my tics have been hyped up because of all the excitement and activity going on, everyone around me has been super accepting and understanding as soon as I explain myself.

At Camp Twitch and Shout, I felt so comfortable and was able to just be myself. After camp, I was so upset that I had to leave that wonderful environment, but I soon realized that I had the power to make my environment in college as close to the accepting and understanding environment of camp as possible — even though I’m the only person with Tourette’s that I know of in this environment.

So it took a lot of educating, explaining and showing my friends that if I was comfortable with my Tourette’s, they could be, too, but I have finally gotten to that point which I have pretty much been aiming to get to for a long, long time, though.

I am at the point where everyone who is a part of my life at college is comfortable with my Tourette’s, knows when to ignore the tics and when to laugh with me about them, and is comfortable and able to chime in with their own comments when I feel like talking about Tourette’s or need to get something off my chest about it.

My Tourette’s is something that is out there and that people know about, but at the same time it does not define me in college.

“Life With Tourette’s” documentary on NatGeo

Life With Tourette’s is a documentary that aired for the first time last night on the National Geographic Channel (NatGeo). It tells the stories of three individuals who are overcoming great odds to pursue their dreams. Here is the description from their website. It will next be shown at 6:30 p.m. Thursday, September 12.

Chris is a 35-year-old, bright, handsome man who has struggled to find a career worthy of his talents. He worked a series of dead-end jobs before deciding to go into training to become a park ranger. However, his very loud and disruptive tics may get in the way of him achieving his dream.

He knows that people are skeptical of him because of his Tourette’s. They see it as a disability, but he wants to prove them wrong. Chris goes through the training to become a park ranger but has a hard time controlling his tics in the classroom setting. He must also go through firearms training to pass the law enforcement academy.

At the gun range, Chris must command extreme focus in order to shoot his firearm. The instructor has doubts about whether someone with Tourette’s, who has uncontrollable twitches, can safely fire a gun. Chris nails the exercise and explains that any time he is in a very serious situation, he is able to control his tics. Still, not everyone passes the academy and he worries his Tourette’s will ruin his chances. Chris finishes his training at the academy and waits for a response to his park ranger application.

Louis is not where he wants to be in life. He is 27 years old and living in his parent’s basement. His dream is to be a standup comic. At 7 years of age he was diagnosed with Tourette’s and the doctors put him on medication. The side effect was severe weight gain. This meant he was not only the kid with Tourette’s, he was the overweight kid with Tourette’s.

It was then that he began using humor to cope with his disorder. He liked to make the kids at school laugh at his own expense so that they wouldn’t make fun of him. Now, he wants to make it big in standup comedy so that he can get out of his parents’ house and out on his own.

As a way of coping with his challenges, Louis goes to group therapy with others that have Tourette’s. It’s helpful to get together and share common experiences, but Louis also reports that it is “comedy gold.” He likes to use his sense of humor to bring levity to the sessions.

Louis gets a gig at a local bowling alley. He is always terribly nervous before any show, no matter what the size of the venue. He takes the stage and struggles to keep the room, but by the end of the show he has everyone cracking up. Louis is hopeful that he’s on his way to bigger and better things. Then he gets a big time booking at one of the best comedy clubs in New York! His nerves are on edge because he knows this could be a make–or–break show.

Zach was diagnosed with late-onset Tourette’s when he was 19 years old. He is now 27 and lives with his wife and baby daughter. His Tourette’s involves him repeatedly hitting himself in the neck with substantial force. Right now Zach makes and delivers pizza. He worries that he won’t be able to provide for his family.

His dream is to become a firefighter. He has applied at 13 fire departments and hasn’t been hired. He worries that closed-minded attitudes about Tourette’s will keep him from ever landing his dream job. Zach takes the fire department’s physical test; a very demanding obstacle course that will test his ability to react and maneuver in a fire.

He isn’t sure whether he will be able to hold his tics in during the test. He doesn’t want anyone from the fire department to know about his Tourette’s because he doesn’t want to jeopardize his chances. However, he finishes the test in record time. He successfully hid his Tourette’s from everyone and is hopeful that this time he will get the firefighter job. He just has to wait a week for a letter from the department.

Tourette’s awareness ribbon tattoo?

Hi everyone. So, I have made a big decision — a decision I thought I’d never make. I have decided that on my 18th birthday (or at least when I’m ready), I will be getting a Tourette’s Awareness ribbon tattoo on my lower back. I think it is a good idea to show off my pride for who I am and for everyone who has it. I will be scared because I hate needles, but I do like the idea. What do you guys think?

Life isn’t all good times and roses!

Lately I’ve noticed that some of you think my life is all positive and only great things happen to me. I can’t blame you for that because a lot of great things have happened to me lately and I never write about the not-so-good-times. I don’t like to write about that, but that doesn’t mean it’s not there. So today: the not-so-good-times!

Three weeks ago, my school year started and that always means that I have more tics. This year came with the lovely surprise of a new tic, which centered right on the edge of my skull and it hurt a lot. A week later, the tic was still there, but I guess I combined it with another tic and I cracked my ribs out of place. I think basically all of them, or at least a lot. That happens to me every few months, as my spine isn’t completely straight and my ribs have too much place to move.

But now, I got dizzy with every move I made and every muscle in my body started to hurt (the tension in my muscles was too high, so even my legs hurt). But the tic was gone, so that was good. I don’t think I could even do the tic with my ribs at the wrong place.

A few days later, I got my ribs cracked back in place and I figured, it would be OK from then on. But no. The muscles in my neck had space to move again and I got even more dizzy now. And the headache got worse. Now my rib wasn’t supporting my head anymore, the muscles in my neck had to do that again, like they are suppose to. But the tic, which I’d only had for one week and I hadn’t done for five days, hurt these muscles so bad that my neck wasn’t really capable to hold my head without making me dizzy and giving me headaches. And it turns out, these muscles are attached to the eyes, what explained the constant dizziness and me not able to see straight.

My physical therapist tried to relax my body (because everything hurt again because of the high muscle tension) and the muscles in my neck, which worked out a bit. And she taped my neck, so the muscles don’t have to carry my head on their own (and it also works against tics).

So now I have bright blue tape on both sides of my neck (which clashes with just about every outfit I want to wear 😉 and at night still a lot of dizziness and headaches. I basically have to lay down as much as possible and if I don’t, I have headaches and I’m dizzy. So I’m taking it slow these days and hopefully the muscles in my neck get stronger soon because I’m really sick of it after three weeks!

But, you know, it’s part of life with Tourette. Life isn’t perfect, I don’t even want it to be. Just try to focus on the good things, like I do (I haven’t had neck tics in two weeks!). And even if you think my life is perfect, when you read my blogs, remember; no life is perfect, I just decided to live my life the way I want to and so should you! 🙂