Children/Youth Notable People with TS

New Canadian Rock Band Features Members with TS


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Say hello to Pariah.

They’re a young, ambitious Canadian rock band, and two of their members happen to have TS.

A five-piece ensemble, Pariah hails from Mississauga and Oakville, and they all love to write music, record and perform.

The band already has their own Facebook page, Twitter account and YouTube channel. On the latter you can hear a demo and watch a video of them performing live, and if you live in the Greater Toronto Area you’ll have a chance to see them play live on Sunday, April 27 at the Rockpile West in Etobicoke, ON.

Pariah is:

Chanel Martins – Lead Vocals
Jiverny Marshall – Rhythm Guitar/Vocals
Dylan Murray – Lead Guitar
Justin Speers – Bass
Ian Coll – Drums

Here’s a video of them performing a song called “Adrift”:

We wish them all the best in their musical careers!

Children/Youth Resources

TS Plus-Friendly Summer Camps in Canada


Often staff at a typical summer camp are unable to accommodate children or youth with TS Plus, whose challenges may include OCD, ADHD, mood disorders, neurological storms/rage episodes and so on. We are publishing this list of TS Plus-friendly camps now, since many camps require early registration, and some even have waiting lists, such as Camp Winston in Ontario. So if you’ve thought of planning a summer camp experience for your young one(s) this summer, it’s best to start acting soon.

If you know of a summer camp that specializes in neurological or cognitive disorders that is not on this list, please let us know by emailing ken@tourette.ca and we will update it.

Camps in Alberta

TSFC Edmonton Chapter Day Camp for kids ages 8-10
TSFC Edmonton Chapter Day Camp for kids ages 11-13
Overnight TS Adventure Camp (TSFC Edmonton Chapter partnership with Centre for Outdoor Education)
Camp Amicus
Camp Bonaventure
Camp Health, Hope & Happiness
Camp Tamarack

Camps in BC

Eureka Outdoor Camp
Venture Academy
Zajac Ranch

Camps in New Brunswick

Camp Rotary

Camps in Nova Scotia

Camp Reachability

Camps in Ontario

Camp Concord
Camp Kennebec
Camp Kirk
Camp Kodiak
Camp Prospect
Camp Tamarack
Camp Winston
Camp Zodiac
Kinark Outdoor Centre
New Stride Day Camp
Ontario Pioneer Camp (Christian)
Rainbow Day Camp

Camps in Saskatchewan

Camp Tamarack

 

Adults Guest Bloggers

Guest Blogger Roddie MacDougall: The Great Canadian Grid


GridHello everyone. I’m a long time TSFC member from way back. My name is Roddie MacDougall. Some just call me Rod. I am 46 and have been living with TS well… forever!  I would like to share with you what I’ve accomplished.  Because a lot of us with TS, including me, find ourselves isolated, afraid to meet others because of twitching, I decided to learn more about how to meet others without feeling isolated. At first it started as social media, but it’s become much more than that.

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I am the developer and creator of a virtual world grid called The Great Canadian Grid for Canadians where people can come and be themselves, either as an avatar or a person or whoever they want to be—without feeling embarrassed—and meet others from Canada and around the world. Currently I host the only Canadian virtual world open simulator grid, and I’d like others to see it. In the last five years of developing the grid I’ve discovered that it’s a great way to meet others without feeling isolated. I run the entire process myself with help from my global team and as of now I’m getting a license to allow streaming music and hosting for DJing inside the game.

Take care and hope to see you ‘in the world’ sometime!

Learn more at www.greatcanadiangrid.ca.

Adults Guest Bloggers TSFC Affiliates

Guest Blogger: Steve Colle


Steve_CSomething that I don’t often read about or hear people talking about regarding Tourette is the fun you can have with it with the right attitude. Believe me, I have my “down” days where I just want it to stop because it either hurts, exhausts me, or just makes me stand out like a sore thumb, but more often than not, I try to joke around about it or make light of it, which in turn creates a level of comfort with those around you, whether family, friends, co-workers, or even total strangers. Here are just a couple of instances where I’ve looked at the bright side:

  • Shortly after being diagnosed 5 years ago, I was picking my wife up at work and heading home when I tried to say the words “I’m hungry.” That, however, is not what came out. One of my symptoms is getting stuck on a word, syllable, or sound (palilalia, not echolalia) and repeating it over and over again until I basically lose my breathe and have to stop, which will sometimes end it but not always. Anyways, I got stuck on part of a word and what came out was “I’m hung-hung-hung-hung-hung…” She couldn’t stop laughing and I had to follow up with a corny remark which wouldn’t be appropriate to repeat.
  • My kids were all together at the dinner table with my wife and I one evening just talking and I got stuck on the word “or” and couldn’t stop, so I started to act like a seal with my hands clapping in front of me. They got a kick out of it.
  • One of the tics I get is the urge to bend forward at the waist, which is an extension of tics that I get in my neck which forces my head forward in a “yes” motion over and over again. The same thing happens at my waist, over and over, and I’ve joked that I look like I’m bowing and follow up with “Pleased to meet you, pleased to meet you…” which is deliberate, not a vocal tic.
  • I literally spent more than two full days non-stop repeating “Okay, okay, okay…” Needless to say, my wife took full advantage of that!
  • I’m at work in the lunchroom with two of my bosses and a co-worker when my right arm starts shooting backwards like I’m trying to elbow someone behind me, as usual, over and over again. I shout out, “Anybody got a lawnmower I can start?” Laughter all around.
  • I was walking for more than two months like I had MS, where my lower back and upper leg would cause both of my legs to shoot forwards (alternating) into giant steps like in the Mother May I game. However, this one day, I found that even though I wasn’t able to walk normally, I could (God knows why) jog! I’m at work in a large retail furniture store as a manager and had to show the store manager something in one of the departments, so I explained that I could run and I took off like a bolt. Next thing I know, he’s running right alongside me! Now that’s support.
  • And finally, a story of the innocence of childhood: I was growling pretty loud with only my 2-year-old son and myself in the house. He turns to me and asks “Daddy, are you a lion?”

I too often get, because my Tourette is sometimes debilitating, a “poor you” or “I don’t know what I’d do…” or “I could never live with Tourette” or some such remark, even from people who I’d thought had adjusted (not accepted) to my syndrome a long time ago. Those are the people I want to convince that, no matter how bad it gets or may seem, I’m fine, I’m healthy, and I know it will pass, even for a short reprieve before it starts back up. The more I can accept it as part of me, the more other people will learn to accept it as well.

Do any of you have similar stories or instances where you’ve been able to laugh about your Tourette?

Steve Colle is a volunteer with the TSFC Calgary Resource Unit, and is the coordinator of the 2014 Calgary Trek. The above originally appeared on an online forum about TS. You can join the official TSFC Forum by clicking here.

Children/Youth Coprolalia Guest Bloggers

Guest Bloggers Julie Spratt & Ken Shyminsky: Coprolalia Myths Demystified


This post originally appeared on Neurologically Gifted, an amazing blog managed by TSFC board member Ken Shyminsky and TSFC volunteer Julie Spratt.

Watching a MovieMyth: Children with coprolalia come from homes where they are exposed to obscene language and/or inappropriate material.

Children who have neurological differences with the symptom of coprolalia have brains that work atypically. Despite often being diagnosed with Attention Deficit Disorder, children with ADD or ADHD are not lacking in attention ability but their attention works differently than a typical child. A typical child’s attention manages their environment by attending to what is important, or what they are directed to, in the particular immediate situation. A child with ADD/ADHD has attention but it most often easily drawn outside the immediate situation and the child is said to be highly distractible. It is not an attention deficit at all but rather the inability to focus that attention where it should be. Often attention is drawn to and captured by what is brightest, what is loudest and what is most inappropriate. Their attention flickers through all the available stimuli and if it settles it will do so on language, actions and social situations that are most different, most exciting and socially taboo or inappropriate.

Actually, the diagnosis Attention Deficit Disorder is misleading. Just ask any parent whose ADHD child can play video games or watch TV for hours but can’t attend long enough to brush their teeth properly. This phenomena is called hyper focusing and it’s very common in ADHD children. To further add to this, it’s easy to focus on things that are interesting, exciting or unusual to us. It takes mental maturity, skill and focussed attention to attend to things that we find boring.

So, the stage is set. Their brilliant minds are primed to pick up the most unusual and inappropriate data their roaming focus can find.

By walking through stores, to and from school, around the mall, and every where else, a child with ADHD or TS has their attention pulled to any inappropriate language, visual material and actions of others they find different or interesting. They notice the teens huddled in the corner smoking, using bad language, or spitting on the ground. They notice how they dress, how they look at each other and how others look at them dissatisfied with their behaviour. They notice reference to sexual behaviour and materials and how society tries to shield them from it. They often get adult sarcasm, hints and inferences. They quickly learn what is inappropriate from all these cues and because of the hyper focus and attention to the behaviours, they stick in the child’s mind like glue. My son from a very young age was particularly drawn to teen behaviour. Walking through a mall with him was a struggle. It took a great deal of effort to keep him on task and with me and I could tell instantly when there was some alternate social teen behaviour happening around us. Suddenly he would be suddenly be still and silent, watching and listening and soaking it all in. He would then recount aloud what he had heard or saw repeatedly and he never forgot his observations. And he was never reluctant to share them with others.

These cases are not bad parenting, or abuse or access to adult material that could be prevented. It is simply a hyper attentive mind doing what it does most easily and effectively: finding and perpetuating that which is most exciting and most instigating.

Unhappy Child Sitting On Floor In Corner At HomeMyth: Children with coprolalia need firmer and more consistent discipline.

Children with coprolalia know what they are saying (or doing in the case of copropraxia) is socially unacceptable. That is how they were drawn to learn it. As a matter of fact, the more they understand the behaviour is unacceptable and the more unacceptable it is, the more they will be driven to do it. Simply stated, the worst possible thing to say or do becomes the hardest thing not to say or do. Ask any child if they know what they are saying is wrong or inappropriate and they will tell you, yes. Often they are embarrassed and ashamed by their own uncomfortable symptoms.

Correcting the child or punishing the child is counterproductive and can dramatically increase the chance of its occurrence. It creates a dialogue in the child’s head that tells them not to say “@!,” because they will be punished. Don’t say “@!.” My dad really hates when I say “@!.” It’s wrong to say “@!.” I will be sent to my room if I say “@!.” The child ends up consumed with thinking “@!,” reinforcing the tic’s neurobiological pathway and making it that much more difficult to prevent its expression. This process of negatively reinforcing the coprolalia adds to the child’s stress level which ultimately makes tics, including coprolalia, worse.

The child already knows it is wrong and is usually already punishing themselves internally, creating a negative impact on their self-esteem and self-worth. Imagine the feeling of being obsessed with doing something you know causes a negative reaction from everyone you care about. The time spent obsessing and worrying about coprolalia leaves the individual less able to manage everything else. Ideally, understanding and knowledge about coprolalia, for the child and adult, helps create a caring environment where the child can grow.

Ask Dr. Ticcy Resources Tic Treatments

Ask Dr. Ticcy: What About Relaxation Techniques?



imagesDear Dr. Ticcy,

Where can I find more information on relaxation techniques?

Thanks!

F.

Dear F.,

Great question.

Relaxation is important for everyone, and can be especially helpful to someone with Tourette Syndrome. Since stress, excitement, and anxiety may intensify or fuel tics, relaxation can assist with symptom mitigation. That is why non-pharmaceutical treatments like Comprehensive Behavioural Intervention for Tics (CBIT) and Habit Reversal Therapy (HRT) are often combined with relaxation therapy/techniques.

To learn more about relaxation techniques try:

 

1. CPRI Brake Shop Clinic

Video: http://www.cpri.ca/videos/Stress%20Techniques%20F.swf
Handouts: http://www.cpri.ca/uploads/section000162/files/handout_stress.pdf
http://www.cpri.ca/uploads/section000162/files/handout_relax.pdf
http://www.cpri.ca/uploads/section000162/files/breathing%20triangle.pdf

 

2. Dr. Leslie E. Packer’s website “Tourette Syndrome Plus”
http://www.tourettesyndrome.net/disorders/anxiety-disorders/relax/

 

3.The TSFC Forum
Try threads like these: http://www.tourettesyndrome.ca/showthread.php?7005-Teach-Yourself-Your-Child-Relaxation
http://www.tourettesyndrome.ca/showthread.php?5029-Relaxation-Techniques

 

4. Asking an Occupational Therapist or Another Trained Professional

 

Ask_Dr_Ticcy_LogoKeep the questions coming Canada!

Sincerely,
Dr. Ticcy

Dr. Ticcy is a pseudonym for the TSFC National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Tic Treatments TS Research

TS Research Breakthrough: Scientists Undercover Mechanism Controlling Tics


300px-Transcranial_magnetic_stimulationScientists have discovered a mechanism that controls Tourette Syndrome tics. This groundbreaking study may allow for the creation of new, non-drug therapies to help TS individuals with their symptoms.

The University of Nottingham-based team used Transcranial Magnetic Stimulation or TMS (pictured) to stimulate patients’ motor function and induce a tic response. They monitored the patients’ brains during the tic stimulation and were able to measure the alterations in brain excitability. Understanding the relationship between the cortical excitability and tics means that scientists may be able to help children better control their tics, says Professor Jackson.

Next, the team used Transcranial Direct Current Stimulation or TDCS to stimulate the brains of children with TS. Early results suggested that this type of brain stimulation may help to reduce the excitability which leads to tics, thus helping individuals to have long tic-free periods.  They also found that a different form of TDCS that increases excitability may help with memory function and learning in the context of behavioural therapies.

The hope is that the technology used in the study can be made into a cheap and portable device that can be applied to children while they are at home. The device would then help the children to control their tics and make their control more effective.

The research was conducted by PhD student Amelia Draper and was funded by the James Tudor Foundation.

For more information, click here.

The next issue of The Green Leaflet, our national newsmagazine, is The Clinical Issue. To receive more amazing content like this, please become a member of the TSFC.

Fundraising Portrayal of TS in Media Surrender Your Say TS Awareness TS History TS Research

Top 13 TS Moments of 2013


2013 was a big year for the TS community both in Canada and internationally. Here’s the TSFC’s list of the biggest TS moments of 2013. Do they match yours?

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  • 7. “Building Your Toolbox” at the National Conference on Tourette Syndrome Plus in Mississauga, Ontario

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What do you think the biggest TS moment was this year? Leave a comment below.

 

Fundraising TSFC Affiliates Volunteerism

Local TSFC Volunteer Wins City Award


Frank Spartico- Ward 9 Volunteer Awards 2013TSFC Ottawa Chapter volunteer and businessperson Frank Spartico (shown centre) received a Business Volunteer Award from Mayor Jim Watson and Councillor Keith Egli on Thursday, November 28, 2013 at Ben Franklin Place. Here are the kind words that were mentioned about him during his award presentation:

Frank is a very active fundraiser for the Ottawa Chapter of the Tourette Syndrome Foundation of Canada. As the owner of Frank’s Baked Goods & Catering (located at 283 Greenbank Road), Frank organizes a popular event every June called “Sandwich for $1.00,” which raises money for this important organization. This successful event, which is the culmination of months and months of dedicated planning and organization, is heading into its fourth year. Ward 9 is fortunate to have an individual like Frank in the community.

We couldn’t agree more. It’s people like Frank that allow our affiliates to continue to help the TS community at the local level, and we are all very lucky to have his support.

Thank you for your service and congratulations on your award, Frank!

ADHD Resources Tic Treatments TS Research

What Are Your ‘Tic Triggers’?


owenWhen someone talks about what causes TS, they’re usually referring to the underlying genetic factors that lead a person to be born with it. But when a person talks about what triggers a tic, that’s entirely different. They want to know the proximate or immediate cause of a tic.

So what does trigger tics? Do any patterns exist, or is it different for everyone? Well, to start with, it’s helpful to divide tic triggers into three categories: environment, ingested or dietary items, and mood/feelings.

When the Association for Comprehensive NeuroTherapy surveyed people about what triggered their tics, it’s no surprise that stress was the most common response. In addition to stress, anxiety, excitement (good or bad) and feeling sick or hungry are also known triggers or factors that can contribute to increased ticcing.

In terms of dietary or ingested items, common tic triggers include: caffeine, alcohol, sweets, sodas, artificial colours and flavours, certain foods like dairy, oranges, gluten, preservatives, monosodium glutamate, and dust and pollen.

For some (not everyone), ADHD medications can worsen tics. The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome states that when people first start taking Ritalin or Methylphenidate or their dosage increases, their tics may worsen. It also states that worsening of tics may occur with doses of Dextroamphetamine (Dexedrine or Dextrostat) that are higher than or equal to 25 mg per day.

Video games, light (flashing, bright or fluorescent), cell phone use, smoke or smoking, scented products, computer use, stadium or amusement park lights, watching TV or movies (especially in the dark) are also triggers for tics in some people.

What are your tic triggers? Do you know what they are? Do you ever record them? Have you ever tried to eliminate them? If so, did this reduce your tics? Please leave a comment below.

Artwork by Owen Moxam