Struggling with tics and anxiety and looking for support

Hi! My name is Hannah, and I have been struggling with Tourette’s for about 6-7 years now. I was never formally diagnosed, though. However, I was diagnosed with depression, ocd, and have multiple symptoms of ADD, however I don’t know if that’s just because of my tics or not. Ever since I was a kid I have done weird tics that made others look at me like I was crazy. I used to push in on my stomach almost as if I was trying to hurt myself. That was where it started. I then developed head-banging & hand shaking symptoms. That was in 4-5 grade. (I still have those 2 to this day & I am a junior in high school) My first vocal tic was a noise I would make as if I was trying to mock a frog. Followed by constant throat clearing and grunting. Those two have also lasted to this day, however the frog noise lasted around 2 years. By seventh grade, I started feeling extremely depressed and I got prescribed 40mg of Prozac to try and help my depression and anxiety. Once I started taking that, my tics continued to get worse. I was still feeling depressed for about 2 years and I developed new tics. They included eye blinking, kicking my leg, having to touch something with my right hand after it touches my left, mocking facial gestures of others (especially on tv), mocking others noises, thumb clicking, shoulder shrugging, jaw clenching, and a few others that were minor. (One that I have developed recently (within the past year) is that a few nights a week or when I am taking a nap, I’ll be in the middle of sleeping/ falling asleep, and I will wake myself up by shouting a random word that I have no control over.)They seem to get worse when I’m thinking about them, but they get better when I’m either doing math or art. I am an honors student in Highschool and make all a’s, which is why my mother never felt like it truly affected me as much as it does. It may not affect me so much academically, but socially and physically it is terrible. Yes, I have a small friend group that knows about my symptoms and makes sure to accept my flaws, but in an uncomfortable situation, or around new people, my tics begin to spiral out of control to where I even sometimes have minutes at a time where my whole body starts shaking and all of my tics go off at once. A lot of the time, I can suppress my tics when I am trying to attract as little attention to myself as possible. However, the longer I hold it in, the worse the urges get. Once I let it out, it all comes out at once and I can’t control it until it takes its toll. I am scared that this will be difficult for me when I apply for a job or try to do anything on my own when I graduate highschool. I have extremely bad social anxiety as well, so the job interview is the scariest part of a job for me. If I am not familiar with the person I get nervous and my tics start to spiral, motor and vocal. I always feel like an outcast because people just don’t understand. I would be so thankful if you would accept all of my efforts to join this blog! I have been looking for a support group and people to talk to that share similar struggles as me and this would be an amazing opportunity! Thank you so much for reading this it really means a lot to me.

Side note:

There are also other minor tics that I do excessively that I never knew were tics until I researched this subject. Such as nail biting, lip biting, knuckle cracking, etc. I didn’t know if those were relevant or not as many people do those things when they get nervous.

New Jersey teen wants to see more acceptance and education

NJ+Walks+for+TS+LOGO2Hallie Hoffman wants you to know that people with Tourette Syndrome (TS) are more than just their diagnosis.

“TS is just one group we belong to, just as people may identify themselves with other groups such as athletes or musicians,” she said, “TS is not a disorder that puts people at social odds with others, as it is sometimes portrayed in the media.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school-age children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder. Hallie is one of them, and she joins other teens as Youth Co-Chairs for this year’s NJ Walks for TS at Princeton.

NJ Walks for TS is a 5K walk and family fun run at Mercer County Park on March 29 by the New Jersey Center for Tourette Syndrome (NJCTS). The event raises awareness while breaking the stigma attached to the disorder.

“Our mission is one of acceptance and education, and we need the public’s help to accomplish this.” said Hallie.

To help is to attend the walk or donate. Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

Education is a very powerful tool in fighting the stigma attached to this disorder, and Hallie knows this well. Her interest in learning more about TS led her to invite a speaker to her school to talk about the disorder- before she even had a diagnosis.

“Even though I knew I had TS, my parents were afraid that if I got the diagnosis, I would be bullied by my peers,” Hallie said. ” It was my interest in educating others about TS that helped me confront my parents about getting a diagnosis, and shortly after I became trained as a Youth Advocate for NJCTS.”

Youth Advocates travel to schools and hospitals to train students and healthcare professionals about TS. Last summer, Hallie was in the first class of the Tim Howard NJCTS Leadership Academy.

“Young people with TS are a force, they are motivated and dedicated to helping their peers living with TS and other neurological disorders,” NJCTS Executive Director Faith W. Rice said. “NJ Walks for TS was founded for kids, by kids- and the work they are able to accomplish will help a new generation.”

Hallie is counting on the public to make this year’s event bigger than ever.

“Not only is [NJ Walks for TS] really fun, but it’s a great way to be a part of a larger goal,” she said. “A 5K may not seem that important, but the support shown and the money raised make a huge difference.”

Legacy of Princeton teen is growing with 2nd annual awareness event

NJ Walks for TS at Princeton returns to Mercer County on Sunday, March 29. The 5K walk/family fun run will take place at Mercer County Park (East Picnic Area) in West Windsor. The second annual walk is growing, and teen Tess Kowalski of Plainsboro is at the center of what promises to be a powerful day.

NJ Walks for TS originated in 2010 in Morris County, and last year the 15-year-old and her father, Tim, brought NJ Walks to the Princeton area. This year, she leads an impressive Honorary Committee and Youth Co-Chairs.

This year’s Honorary Committee will be co-chaired by District 14 Senator Linda Greenstein and Assemblyman Daniel Benson. They are joined by District 7 Senator Dianne B. Allen and Assemblyman Herb Conaway, Jr., and Princeton Mayor Liz Lempert. This list is expected to grow.

“Their support means so much to NJCTS and the 20,000 kids with Tourette Syndrome in New Jersey,” NJCTS Executive Director Faith W. Rice said.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder remains misunderstood and misdiagnosed in the medical community. Proceeds from NJ Walks will benefit the Education Outreach Programs of NJCTS which train health-care professionals, educators and students across the state.

“Each dollar will make a difference in helping us improve diagnosis, treatment and life for kids with TS and their families,” Rice said. “We are also working in schools to spread an effective anti-bullying message of awareness and acceptance that benefits all students and training a new generation of youth leaders, but we can’t do it without support.”

“You don’t have to know about it [TS] to walk,” but should, said Tess, “because it feels good, it’s a nice thing to do.”

Just like the Honorary Committee, the NJ Walks for TS at Princeton Youth Co-Chairs are also spreading the word. In addition to Tess, the Youth Co-chairs include, Ethan Lederman of Howell, Hallie Hoffman of Belle Mead, and Anna Heicklen of Medford Lakes.

Register for the walk here, and donate for the walk here. For more information, please visit www.njcts.org.

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.

Me time, isolation & the domino effect

“I just don’t like people.”

I have said this phrase before. I am going to let you in on a secret.

IT IS A LIE!

I mentioned in my previous post that some things can be good, even great, for you mentally and physically, but some of us can allow some of these things to become unhealthy. Today, I have been contemplating one of the things that I personally tend to take too far and allow to become unhealthy in my life.

See, every Sunday I wake up, put myself together, and make a 20-minute drive to attend church. Once I walk into the building, I extend quick greetings in the form of a ‘hello’ or ‘how are you’ to the many acquaintances, chat with the small handful of people I personally know, and take a seat.

Yesterday was very different for me, however. See, my fiancé is on the music team at our church. Quite often they team gets together bright and early to have breakfast together before heading to the church to practice a bit before they play for the worship services. Yesterday, I woke up bright and early to join the goofy crew, or shall I say dark and early considering it was four o’clock in the morning and not a hint of daylight was to be found. Jacob and I met up with the group, where we all stuffed our faces with what felt more like a midnight snack than breakfast.

After our super early breakfast, we headed to the church where I hung out in what I believe is sometimes called the ‘green room’ or ‘volunteer center’, working on a blanket I am crocheting while the band practiced and during the first service. Throughout the morning we laughing so hard. We shared stories and jokes and picked on each other.

It would be an understatement to say that I had a blast! It was great to be able to get out of my own little world, break off the shell I wear pretty much daily, and interact with a great group of people. I allowed myself to be social. Ultimately, at the end of the day, I felt like I had been allowed to be involved and included in something. I wasn’t simply ‘going to church’, but I was actually experiencing something that I have so desperately missed.

Quiet, alone time can be a good thing. After a long, hard, tiring week or work and the fifty other things that we have to try and cram into our schedules as individuals who make up a society, it is good to take some time out for ourselves, recuperate, and reload of all the energy we have somehow lost in the midst of all the chaos. ‘Me time’ is a good thing! The problem is when we turn the good thing into something really unhealthy.

Naturally, I am an introvert. I don’t put myself out there a lot. I am extremely shy and reserved around people I do not know well. Once I get comfortable in an environment, however, my alter ego comes out. I become an extrovert. I laugh and cut up and have a good time.

I require a good, generous amount of ‘me time’ so that I do not get burnt out and zapped of all social energy. It is extremely easy for me to turn needing a generous amount of ‘me time’ into becoming an antisocial hobbit, though. I tend to take too much ‘me time’ and begin isolating myself and do not allow myself to get out of my bubble and my own little world and socialize with other human beings. ‘Me time’ becomes unhealthy.

My depression feeds on isolation. We begin a domino effect when we isolate. The more we isolate ourselves, the more we feel alone. The more we feel alone, the more depressed we become. As humans, we need interaction with other humans. I mean, if you’ll read the second chapter of Genesis in the Bible, you will see that God created Adam, and then He created Eve because “It is not good for man to be alone.” (Genesis 2:18 NLV)

It’s not good for us to be alone. It is good to get some quiet time to ourselves where we can regain our energy. Even then, though, we are not truly alone. We need each other. We need to interact with other people to strengthen us. We need to be able to lift each other up, encourage each other and let each other know that we are not alone. We are not alone in our struggles. We are not alone in the things we face daily.

I created this blog because isolation and feeling alone is something that the parasite called depression feeds on. I chose to openly admit and talk about the things I have struggled with and the things I struggle with now because I absolutely hate the thought of another human being going through the same things and feeling like they are alone. If you are reading this, I want you to know that you are not alone.

You are not alone in your struggles. You are not alone in your battles. You are not alone in this great big world. It may seem that way at times, but it simply is not true.

My mission is to help others realize that they are not alone, but I have allowed myself to sit back and become isolated enough to feel alone at times. So, if you tend to isolate and feel alone…

You are not alone. You are not the only one who does this.

Stay Safe, Stay Strong, Stay Beautifully Imperfect. Bye!

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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Positive distractions

This past weekend was quite difficult. My head jerking tic came back with a vengeance. It has been painful and exhausting. After a day or two, I realized I had a giant lump on the base of the back of my neck. The next day I began one of my hitting tics, which is hitting my shoulder repeatedly. So, as you can imagine, it was not long before I had a bit of a bruise on my right shoulder. Today, I am not ticking nearly as much, but I am still a bit sore.

It was not just physically that I have felt exhausted, but mentally as well. The only other time I could think of when my tics actually hurt was when they first became a huge problem and I was finally diagnosed with Tourette’s. So, those thoughts and the anxiety that it was going to continue getting worse before it would get any better added to the natural effects of sitting around and doing nothing all weekend…well, you can probably imagine how epically BLAH I felt. 

I will admit that by Sunday evening, when I had started my hitting tic, I was beginning to feel downright horrible and slightly depressed. As I sat at home by myself Monday, I started searching within myself for ways to make myself feel better. I quickly discovered that all the old negative coping skills I used to apply in this situation were all that I could think of. I wondered…where have all the positive distractions I had adopted in time?

This morning, as I was browsing the YouTube universe, I came across a video by Emma Blackery about being angry and things to do when you are angry that will help you feel better and calm down. As I was watching this video, I began thinking of the positive distractions and coping skills that I have learned over the years. So, I thought I would share some of the things I love to do that really help calm me down when I’m anxious or upset or angry or help distract me when I am feeling depressed.

NUMBER 1!!!

Music. Everyone loves music. You can’t tell me that you genuinely do not like music of some kind. Not everyone likes the same genre of music or the same artists, but I am pretty positive that we all like some form of music or another. If not, let me know because I have never met anyone who doesn’t.

Anyway…yeah…Music is a great escape. When you can find a song that expresses exactly how you are feeling in that moment, it is as if someone finally understands what you are going through and what you are feeling. And when you find out that someone else likes the same artists or songs, you instantly have something in common with that person that you can talk about. Music brings people together in ways you can’t even imagine. Music can brighten your day and bring a whole new perspective and attitude into your day. Happy music makes people happy!

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2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

Share Your Story: Everything that happens in life can be used for good

Hello, my name is Jasmine. I am 24 years old. If you know me or have read anything I’ve written previously, you know that I have Tourette Syndrome. However, there are a few things about me you may not know.

For example, I have fought a battle for much of my life that a lot of people fight. Like others who fight, I have always fought in private. It is not a battle against others. I have defended against darkness, hopelessness and ultimately myself. Now, I am taking big steps to fight offensively, not defensively. I am not telling you all this for sympathy or for pity. I am simply sharing my story because I know how it feels to wish you weren’t alone. I know that it helps to know that someone out there understands what you are going through. Part of being human is having flaws and faults.

I was diagnosed with depression and anxiety at the age of 18. The fear I felt at having a mental illness was almost as intense as the fear that it would never end. There is so much stigma in the world around us about mental illness. It’s sad, really. I find it sad that people create such stigma. It is such a negative thing.

Not only does it create misunderstanding, but it makes those who already feel so alone in the world feel even more isolated than they did in the first place. It keeps those who truly need help from seeking it out because they are afraid of what people will think of them. We become afraid of being judged and looked at differently. Sadly, that does happen … and it’s because of the stigma. Stigma is why a lot of people, such as myself, suffer in silence for far too long.

I suffered in silence until I absolutely had to find a means of escape. I searched desperately for a way to numb the pain I felt on the inside, so I created a pain I knew the source of and could control of on the outside. That is where self-injury entered the scene. Contrary to the stigma, it was never about attention. It was never an attempt to do permanent damage such as suicide.

In fact, it was something I desperately hid from everyone around me, from all those whom I loved. It was a way to cope so that I could stay alive. Even though it was only a temporary relief, it became an addiction that I couldn’t control and didn’t know how to quit.

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