Opening Up For Awareness Month

By Ben Brown

I’ve seen some seriously strong advocacy moves since Tourette Awareness Month began on May 15. Some of my favorites come from people who’ve used the time period (until June 15) to open up publicly about having TS, provide info about what it is and how it applies to their lives, and invite questions from anyone wanting more.

I’d like to highlight this one from a Touretter named Cail, whose backstory is kind of similar to mine: had TS since childhood and got on cloaking its noticeability rather than living with it openly (or publicly or freely or naturally, whatever the right word is). Well, after Cail and his son were both recently diagnosed with ADHD, Cail considered the link with his Tourette Syndrome and sought further info. In the process, he found the podcast, related to the guests’ personal stories, and ended up making a bulk of silicone wristbands for awareness. According to his website, a good portion of the proceeds goes to the Tourette Association of America.

But then he thought over how he’d never opened up to the people in his life about having TS; he’d only told a select few. So he straight-up went for it on YouTube with a video, titled, “I have Tourette Syndrome.” It’s three-and-a-half minutes and smoothly humanizes the explanation of what Tourette Syndrome is. Thanks, Cail!

And thanks to the masses of you sharing similar stories. I know this is one of so many successful communications. Keep it going!

S3 - Episode 11 - Everything Was a Laser Noise

By Ben Brown

As Tourette Awareness Month continues, we hear Jason from Australia, a guest as warm and comforting as hot chocolate, throw down some seriously quotable stuff here about accepting Tourette Syndrome, laughing about it from time to time, and being a darn good parent. Medication, meditation, gaming, mentoring and more discussed.

Plus: a couple special announcements.

But we start with a question -- should we rename Tourette Syndrome? Yes, that question is going around.

Jason's show, Experience This 2 https://www.twitch.tv/experiencethis2

"Rename Tourette Syndrome?" https://www.tourettespodcast.com/blog/rename-tourette-syndrome

Sunshine & Powercuts (Tourette's Podcast will be part of its August 2019 Summit) https://www.sunshineandpowercuts.com/

S3 - Episode 10 - Exorcism

By Ben Brown

For Episode 10 of Season 3, we've called a doctor. (Yes, one with TS.) Clay Jones, M.D., is a pediatrician with a frequent byline on the widely read Science-Based Medicine (SBM) blog and is co-host of The Prism Podcast, which explores science, skepticism and the perils of not being an informed or careful seeker of what should be life-improving solutions.

That's kind of an uncomfortable subject to dig into sometimes, particularly within the Tourette community. I've heard from Touretters asking whether I've tried certain alternative "remedies" or "healing" practices, or if I know anyone who has. What's tough about that is we as Touretters don't have a wholesale, go-to, zap-it-away solution presently. And as noted in a previous post here, current insurance protocols don't make it any easier.

That may lead individuals searching for relief wherever hope might be -- which, sadly, is the scenario that swindlers love. That's not to say there's no merit in looking outside the mainstream for a solution that might work for you when all else has failed. Just be careful. Really careful. Ask questions. Ask for the science behind it, and don't accept feelgood anecdotes as a substitute. Some listeners I've heard from are desperate -- the word used -- for relief from complicated TS. Clay, on this episode, discusses his own TS before helping us develop our defenses against peddlers of illegitimate answers.

Clay Jones, M.D., on Science-Based Medicine https://sciencebasedmedicine.org/author/clayjones/

On Twitter https://twitter.com/SBMPediatrics

New Tourette's Podcast website https://www.tourettespodcast.com/

Support the show https://www.patreon.com/tourettespodcast

S3 - Episode 9 - Not Real Housewives of Tourette or Anything

Packed episode with an amazing guest -- one you might already know. Kristin Moorehead has been on A&E's "Raising Tourette's" and continues strong advocacy for the community with the kind of humor that connects. Great lessons in advocacy, finding resources, and having a laugh. Plus: A non-Touretter question answered and followups to recent haps in TS science.

Links:

A Patient-Centered Perspective on the Future of Tic Disorder Diagnosis: Response to “Tic disorders revisited: Introduction to the term ‘tic spectrum disorders” by Müller-Vahl et al. - https://psyarxiv.com/egknj

Kristin Moorehead on Twitter - https://twitter.com/K__Moorehead

Tourette Association of America, "Ben Brown's Story" - https://tourette.org/ben-browns-story/