Tourette's Podcast

Seamus Evans, an ambassador for the Tourette Syndrome Association of Australia, is a standup comedian, television and radio personality, and keynote speaker working in his experience with Tourette and the boundaries it seemed to set for him -- which he essentially laughed right past. Not that it was overnight-easy. Not that he didn't have the challenges and self-doubt and depression and everything else on the TS dinner menu. He brought all of that along and today shares what he figured out about himself. His story is so kinetic that we need a part-two. Plus: a listener question about music and concentration.

https://www.seamusevans.com/

TAA's YouTube page

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

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

A small preview of the good times awaiting you on Episode 11 of Season 7, out this weekend. It'll be a good one; we're checking back in with Australia. Eyes peeled!

This is a replay of an episode from 2019 that speaks pretty well to the emails we get asking for discussion of alternative "remedies" -- and why the podcast doesn't (or does so with heavy heaps of caution). Here's the writeup that accompanied the original airing:

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

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Tourette. Rhetoric. Tourrhetoric. We're talking on this episode with Sophia Maier, a Touretter who takes extra care and study when it comes to the shapes and tones and incisions we create with our words. This isn't just a "words matter" dialogue -- it's about really caring for the language people use and why, so loaded with implications for empathy, public policy and, maybe most importantly, reflections WITHIN individual communities to allow for criticism and growth. In focus here are Sophia's life as a trans woman, her appreciation for her own tics, coprolalia (never censored here) included, and her recognition that individual challenging factors like TS aren't enough to constitute or capture the full experience of other marginalized or mistreated communities.

We're also remembering the life and work of someone we've lost -- Suzanne Dobson, chief executive of Tourette's Action in the UK.

Sophia Maier: A story of transition

On Instagram| Twitter| [email protected] | [email protected]

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Astrophysicist Mark Giovinazzi is on the show -- a guest we're meeting almost at random. Mark, an exoplanet-hunter, sees the chaos of Tourette and the universe working nicely together. Plus: that vocal-tic feeling; and Ben has an wonderful panic attack at work.

https://exoplanets.nasa.gov/

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Fourteen-year-old Jack Kearney, an active Touretter whose name you might've heard around the community, brings an important point -- when it comes to community, don't forget yourself. When Tourette became a focus at his school, with visiting ambassadors spreading peer education, Jack made sure to share his own story, style and perspective -- a solid move to improve peers' contextual connection. It includes a really comfortable openness for Jack and even a time when he bailed a fellow Touretter out of isolation. That's big -- Jack remembers telling the universe he knows there's someone else out there like him, and how it felt to confirm that in meeting a fellow Touretter. But let's go further. Jack is a budding standup comedian (and fan of Samuel Comroe) and doesn't see his Tourette diagnosis as some irritible, sensitive, sacred subject to leave out of the jokebook -- a pretty hot topic. He explains himself perfectly here in a great conversation with a big reminder for Ben, who, separately on this episode, questions his own positivity.

What an episode. Winter Tashlin is a name you might know from the Twittersphere and acceptance messaging. But hearing him speak is something else. From his accent, you'll quite understandably assume he's British. Many of his fellow Americans do. This -- along with his creativity, queerness, self-acceptance and other central elements -- all interact with his Tourette Syndrome. He also has the airport story none of you want to experience and a real neckbreaker of a tic (really, literally) in his past, but gluing this whole episode in place is Winter's sense of command and honesty with his story. He regards his Tourette in a sophisticated way.

Hello new listeners!

Winter Tashlin on Twitter

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Getting it done in a rural area with little to no support for Tourette Syndrome is just one of the vitals we hit with our guest this week, Amelie, a 15-year-old who lives in a small village in Ireland and depends on herself to not only live with her TS but educate peers as well -- something she's done a solid job with. Great takes from a seriously thoughtful teenage ambassador here.

Plus: A difficult self-observation project. And a listener tries to keep it together despite real frustrations judgmental people.

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Tourette's Action UK

Dan Zerin is here! The Iceland-based comedian and podcast host welcomes room for lighter-side talk about Tourette et al. He in fact was part of an award-winning comedy stage show about Tourette Syndrome, "My Voices Have Tourettes," which ran weekly to sold out rooms -- for years. Since the pandemic hit, it's been a podcast you'll want to bookmark if you haven't already. Somewhat in the spirit of Kurt Vonnegut's compassion-through-levity, this episode hits the real stuff and gets silly.

First, though, responses to Episode 4, about the "TikTok Tourette" thing happening. It becomes a great discussion.

Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support!

You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast

Tourette's Podcast Discussion Group on Facebook

Bonus episode! If you're new to Tourette Syndrome, it's fair if you haven't heard the name Oliver Sacks before. But he's one of the most acclaimed figures in all of neuroscience -- arguably in all of medicine, and his humanization of disorders including Tourette had incalculable benefit. In May, Ben got to interview people closely involved with Sacks and the new documentary about his life, "Oliver Sacks: His Own Life." On this bonus episode we have film director Ric Burns; Oliver Sacks Foundation Executive Director and close friend to the late doctor Kate Edgar; photographer Lowell Handler, also a close longtime friend to Sacks; and Tourette Association of America President and CEO Amanda Talty. The panel discusses Sacks' contributions, but also the early difficulties he faced being taken seriously within his own profession, drug use, and his isolating experiences as a gay man. This talk was part of the Tourette Association of America's annual conference in May 2021.