Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

I don’t watch Dancing with the Stars often, but when I heard that there was going to be a  Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette

If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

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Guest Blogger: Making my film about TS

bella

What Makes Us Tic is a feature-length documentary that aims to increase awareness and understanding of Tourette Syndrome. Through a variety of media including personal interviews, a short film, and an animated robot named R.T.S.T., What Makes Us Tic will illustrate what it’s like to live with Tourette Syndrome, and give audiences a good understanding of the disorder to help stamp out common stigmas and misconceptions.

The filmmaker, Bella Thomson (pictured in this screenshot from an earlier draft of the film), is a high-school student from British Columbia in Canada who has lived with Tourette Syndrome since she was 9 years old. She feels very passionate about raising awareness for the disorder because she’s experienced first-hand the ignorance and lack of understanding that so many people have towards TS, so she’s combined this with her love of film to create a documentary.

OK, enough with the formalities. I’m sure you’re wondering why any teenager in their right mind would attempt to produce a feature-length documentary, and have it finished before they graduate. Well, my best answer to this question (other than that I am just very ambitious) is that I am very driven in my passion to raise awareness for Tourette Syndrome.

To me, if society can come to understand afflictions like cancer or multiple sclerosis, then they can come to understand Tourette Syndrome, and know that it’s morally wrong to mock it, like it is for a lot of disorders or afflictions nowadays. I want people with TS to be able to feel comfortable being themselves, and not afraid of who they are. In short, I want to do my part to make a difference for TS, and I think because I’m still a student living with the disorder, that impact will be so much greater!

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7 strategies for highly successful teens

Vanessa Van Petten is the founder, CEO and lead writer for Radical Parenting.

Hi! Happy New Year! I’m so excited to announce a new life-changing program I have created for teens. In this fun, entertaining and inspirational talk I go over the 7 strategies for highly effective teens. This is nothing like your typical high school presentation. Here are some highlights:

  • Groundbreaking research insights about the teen brain and behavior
  • Hilarious and inspiring videos
  • Immediately applicable action steps to motivate and encourage teens from all levels
  • Relatable stories for teens to feel engaged and understood

I can’t give too much away, but in this talk we delve into both the lighthearted and serious issues teens face including:

  • Effective communication with peers, parents and teachers
  • Mastering the online environment — preventing cyberbullying, staying savvy online and building a digital reputation that lasts
  • School — life balance, reducing stress and finding the right outlets
  • How to have healthy relationships with the important people in a teen’s life
  • Planning for the future, smart college applications, resume building and finding your life passions

I am stoked about this new talk and have already booked out January, February and March at High Schools, youth conferences and Parent groups around the US. Please contact our manager Lynn Campbell for pricing and date availability at manager@radicalparenting.com.

Find out if we might already be coming to your city! And yes, of course, we have tween, parent and teacher versions!

Adult Onset Tourette Syndrome: The best tics

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog who this year, at age 21, was diagnosed with TS.

WARNING: This post is designed to show what living with tics, Tourette Syndrome and coprolalia can be like. However, some of the language in this post is quite coprolalic and very offensive, so please proceed at your own risk. Teens4TS and NJCTS are not responsible for, nor do they condone, any of the content in this post.

“Bath-time with the boogie monster!”

“Hitchin’ a ride on the pleasure wagon!”

“There’s no hope for the Jews!”

“Peanut gravy shoes”

“Make me a sandwich!”

“Make me a baby!”

“Nigger in a beard!”

“Slippery Fish!”

“Kippers in slippers…”

“I’m a llama!”

“I’m an alien!”

“Vagina-face monologue”

“Fanny-hole dubstep!”

“I’m gay but I like tits too…”

“There’s a marmoset in my knickers!”

“Liam Neeson has pubes on his arms”

“Liam Neeson is secretly gay!”

“Seth Rogan has aids”

“I’m wearing a bra and it’s made of cheesecake”

“Cat wanker!”

“Mary Berry is hiding in our toilet”

“I valet pigs for a living”

“Pig valet, only 50p!”

“The world is a big place…full of gypsies!”

“Arsenic in the roast”

“Sausages are from the Netherlands. Period.”

Adult Onset Tourette Syndrome: Suppression

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog who this year, at age 21, was diagnosed with TS.

I’ve started to realize lately how much I suppress my tics pretty much all of the time, and how tiring it is. Suppressing a tic is like suppressing a sneeze; eventually it’s going to happen, so you’re just delaying the inevitable.

When I’m driving in my car (I’m still not sure if this is legal yet or not) I let it all go, and it feel fantastic. This is usually because I’m driving to or from work, where I HAVE to suppress it, so I’m either wearing myself out beforehand or letting it out after. But still, I feel like I never take time to be completely myself in my free time and time with my girlfriend.

However, nowadays small things have been seeping out, as I have said. The coprolalia in parts as well as more painful urges. I’d be interested to see what it might be like to spend a full day with myself as I naturally am, and see how it felt to deal with the full onslaught.

Adult Onset Tourette Syndrome: How it started

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog.

I am a male, 21 years old, and this year, in 2013, I have developed what is in the process of being diagnosed at Tourette Syndrome (TS). I say in the process because the last medical professional I spoke to has explained to me that the condition cannot be diagnosed any earlier than 1 year after the initial onset, which for me will be early in February 2014.

However, what he did tell me after a 20-minute consultation is that he can see no other alternative diagnosis for the time being. I am awaiting an MRI scan, the results of which will be posted in a later entry, and for the time being that is the only name I can put to the condition in order to explain it to those closest to me.

So here is my story, in as many words as I can put it, to help anybody else in the world that is experiencing the same thing as I have been. And to those of you who are, come forward! Contact me, get in touch and tell me what’s going on. It’s all very new to me and I would love to be able to help and learn as much as I can. So, here’s the story… Continue reading