Reviewing S7 Episode 14 - Women and Tourette

Keeping last week's episode - our analysis with tourette scientist Dr. Christine Conelea on some of the recent talk about young women and their symptoms -- in focus, this week is a referral to a response video from Tics n Tatts on YouTube. Kass, who runs the channel, adds great points. Tons left to explore with this question: has the Tourette science and treatment world gotten it wrong when it comes to Tourette and other neurological observations in women?

Tourettes in Females Part 1: Recap of the Tourettes Podcast - YouTube

S7 - Episode 14 - Science Episode: Revisiting the TikTok Thing, Sex Differences — Tourette's Podcast (tourettespodcast.com)

S7 - Episode 4 - Is TikTok Giving People Tourette Syndrome? (Science Episode!) — Tourette's Podcast (tourettespodcast.com)

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S7 - Episode 14 - Science Episode: Revisiting the TikTok Thing, Sex Differences

Recall our episode a while back with the authors of scientific report examining why doctors were seeing reported swells of young women over the course of the pandemic with Tourette-looking symptoms, and how social media like TikTok -- by way of the tic-heavy videos posted by influential Tourette personalities -- might be a player. We're revisiting that on this episode, but from a different angle. What else might be going on? Are we getting it wrong when it comes to what Tourette looks like in females?

What we examine:

Are there real differences in how Tourette expresses in boys versus girls, men versus women?

What's up with that observed boost in young women presenting tics? TikTok?

What do we know about Tourette Syndrome nowadays from a science standpoint?

How involved are Tourette patients in the conversations and work in science and medicine?

Our guest is Tourette scientist (and longtime friend of the show) Dr. Christine Conelea, who has been doing amazing work busting Tourette myths and bringing clarity to the public.

Great new review paper “The Female #Tourette Patient: Sex Differences in Tourette Disorder” by Garris & Quigghttps://t.co/1d0DLbZGvS
Highlights! pic.twitter.com/fKkw3PAFWv

— Dr. Christine Conelea (@cconelea) September 7, 2021

@cconelea on Twitter (and her 56-second summary of Tourette neuroscience)

Dr. Conelea giving us highlights from the recent paper "The Female Tourette Patient: Sex Differences in Tourette Disorder"

That paper in full

EXTRA: @ticsntatts discussing the "functional tics" thing

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S7 - Episode 13 - X-Rays

Saddiq is a radiography student and fitness Instagrammer/TikTok-er whose energy-spending workouts serve a role for his Tourette, discussed here in addition to late diagnosis, coprolalia, creativity and the stress of travel.

https://www.instagram.com/saddiqhead/

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S7 - Episode 12 - Listener Mail

A different kind of episode this week -- all listener questions, including some day-of zingers. Should we make this an occasional thing? An all-listener-questions episode? Contact.

TAA's YouTube page

Ask the Expert: Tourette and COVID-19 Vaccine

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S7 - Episode 11 - Hit a Seven

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

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S7 - Replay - Exorcism (and Other Bogus Solutions)

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/

SBM on dental appliances https://sciencebasedmedicine.org/ticd-off/

On Twitter https://twitter.com/SBMPediatrics

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

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S7 - Episode 10 - Tourrhetoric

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| crm49@psu.edu | kbub530@gmail.com

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S7 - Episode 9 - Exoplanets

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/

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S7 - Episode 8 - There Is Another

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 irritable, sensitive, sacred subject to leave out of the joke book. He explains himself perfectly here in a great conversation with a big reminder for Ben, who, separately on this episode, questions his own positivity.

Rosemarie Kearney (Jack’s mom) on Twitter

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S7 - Episode 7 - Two Cards

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

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S7 - Episode 6 - You Can't Overdose on Music

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.

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Tourette's Action UK

S7 - Episode 5 - Ticbait (With Comedian Dan Zerin)

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.

My Voice Have Tourettes podcast episodes

MVHT episode with Ben

TAA Webinars, Conference Sessions

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BONUS: The Real Life of Oliver Sacks

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.

Oliver Sacks: His Own Life

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Oliver Sacks by Maria Popova (Wikimedia Commons)

S7 - Episode 4 - Is TikTok Giving People Tourette Syndrome? (Science Episode!)

UPDATE, Sept. 2021: Please also listen to S7 Episode 14, which features a response to the conclusions discussed on this episode. Previously, S7 Episode 5 included a critical response.

Let's crack into a mystery. Scientists began to notice it as the pandemic revised our lives -- young people started showing up to the doctor in surprising numbers with what looked like Tourette Syndrome. Out of nowhere. No such prior symptoms. The common denominator? They'd all been watching Tourette content on the social media video-making-and-sharing app TikTok. Is the TS stuff on TikTok somehow bringing out some dormant, previously undocumented tic disorder in its viewers? What's going on? We bring on a couple scientists -- Drs. Tamara Pringsheim and Davide Martino of the University of Calgary -- to investigate. And, yeah, it gets interesting.

(And no — TikTok is not “giving” people TS; there’s something else, and truly interesting, happening.)

Plus: Revisiting a question from a struggling parent. And Tourette Awareness Month continues.

Going Viral: Social Media May Be Increasing Cases of New-Onset Tics

Work from Drs. Tamara Pringsheim and Davide Martino

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Photography and Mental Health

The intersection of photography and Tourette Syndrome gets a new light in this interview that artists Celine Gabrielle and Jade Usackas conduct with me here in Episode 23 of the podcast Art, ok cool.

Outside of podcasting, multimedia -- chiefly photography -- is my occupation, and my camera is very much a life-navigation tool.

Celine is the mother of someone with Tourette and knows how helpful artistic expression is for the community. Here, specifically, Celine and Jade ask me about how photography and observation helps me with mental (and physical) wellness: managing anxiety, introversion, tic frequency, etc.

If anyone has any questions for me about photography -- getting into it, what you'll need, helpful ways to think about it in relation to TS -- contact me.

Thanks to Celine and Jade for being great hosts and for having me on. Listen.

S7 - Episode 3 - Three Days Ago

What better way to celebrate Tourette Awareness Month (May 15-June 15) than to open up about having the disorder? For the first time, ever, we mean (to whom it applies).

Just a few days before this episode's conversation took place, our guest, 26-year-old Jhonelle, spoke up for the first time publicly about her life with Tourette Syndrome. To classmates, everyone.

Which came with self-questioning. Would people treat her differently? Would they doubt her? Take her seriously?

Plus: A few science facts that Touretters should know.

Jhonelle on Instagram

Dr. Christine Conelea (TS scientist) on Twitter

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Jhonelle Bean

S7 - Episode 2 - Real Life That You Don't Know

This is a milestone of sorts; we're talking with the first guest Tourette's Podcast ever had -- Maddie -- to hear how life has been since she opened it up to the world on Season 1, Episode 1. This is one of those roaming, casual-paced conversations that covers so much -- from self-evaluation to relationships to Elon Musk and cyborgs to transition points to openness with one's employer and so much more. Lots of laughing. 

Hope you enjoyed the Tourette Association of America's virtual conference last weekend. We catch up on it in the episode's intro.

Maddie on Twitter

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It's here! SEASON 7! Episodes 0 and 1

Popping with Tourette Awareness Month (May 15-June 15), here's your entry to lucky number Season 7 of Tourette's Podcast with, as always, a twofer.

Episode 0 of Season 7, "Launch," captures a super solid conversation between podcast host Ben and two giants in the Tourette advocacy world -- TV presenter and wine/spirits expert Aidy Smith; and advocate, author and YouTuber Britney Wolf. This conversation, recorded live with a big online audience, kicked off the Tourette Association of America's 2021 virtual conference (May 14-16). Funny, sharp, serious, emotional -- we hit all the strings when it comes to life with Tourette and take some great audience questions.

Past Tourette's Podcast conversation with Aidy Smith

Past Tourette's Podcast conversation with Britney Wolf

Aidy Smith on Instagram

Britney Wolf on Instagram

Tourette Association of America 2021 Virtual Conference

Episode 1 of Season 7, "Whispering For Too Long," is one of the best conversations Tourette's Podcast has ever recorded. Our guest is Gogo. She's lived with TS her entire life, but didn't know it as such until much later in adulthood -- and that's a big factor for her. When she finally got the diagnosis, it was like the world turned different colors. One thing to know about Gogo -- she speaks her mind. With that, you get some of the funniest takes ever; but there's a lot of raw stuff here, too (with uncensored language, if you need such notice). Seriously, it doesn't get any more honest than this.

Gogo White on Instagram

Tourette Association of America 2021 Virtual Conference

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BIG! Season 7! TAA Conference! Cool Breaking News, Too!

Folks! Season 7 is here, and just ahead of Tourette Awareness Month (May 15-June 15), kicked off PROPERLY by 2021 Virtual Conference with the Tourette Association of America. Here we catch up with Meghan Burns from TAA to talk about why this one is so significant. And just drops some cool breaking news on us. Listen! Check in! Lots coming up and we couldn't be more excited.

https://www.touretteconference.org/

https://tourette.org/

-

https://www.patreon.com/tourettespodcast

Big Study: Strep Infection Doesn't Bring Out Tourette Syndrome

By Ben Brown

Not infrequently, listeners will write in asking about a connection they read about online between strep infection and Tourette Syndrome. The claim usually is that strep infection causes or makes for worsened tic disorder activity.

But the consensus science hasn't supported that. Now, the release of a big Tourette study has some scientists saying firmly that strep indeed doesn't play a part in tics as claimed.

"This large, multinational Tourette study led by Davide Martino settles the debate for me. Strep infection does NOT make tics worse," Dr. Christine Conelea, assistant professor at the University of Minnesota, Twin Cities, Department of Psychiatry & Behavioral Sciences, tweeted on Feb. 17. (She also helps Tourette's Podcast answer science questions from listeners.)

Dr. Conelea added of the study: "GAS (Group A Streptococcus) work-ups and infection management aren't likely to improve tics and are 'not recommended.'"

The study was published in Neurology, the foremost journal in the field.

Martino, the primary author, is the director of the Movement Disorders Program at the University of Calgary's Hotchkiss Brain Institute.

We also addressed this in part of Episode 10 of Season 6 based on earlier information from various scientific resources.

This large, multinational #Tourette study led by David Martino settles the debate for me:

Strep infection does NOT make tics worse

GAS work-ups and infection management aren’t likely to improve tics and are “not recommended”https://t.co/YsjdpGsLoZ

— Dr. Christine Conelea (@cconelea) February 17, 2021