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.

Continue reading

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!

Continue reading