Tourette's Podcast

Talking with professional writer Tara Lerman about a great many things, including the vitality we can find in highlighting Tourette stories and ongoing issues the community faces. Plus: a heap of answers to the question about good/constructive activities for a young person with Tourette.

https://www.taralerman.com/

Tara Lerman, 'Why We Need to Change the Conversation Around Tourette Syndrome'

Tourette Association of America FY22 Annual Report

Let's crack into a mystery. Scientists began to notice it as the pandemic revised our lives -- young people, almost all of them women, 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? Are they faking it? 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.

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

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

I posted this in the Tourette’s Podcast Discussion Group earlier and figured I should here too —

It's been a long day here, but I wanted to say something:

If there's one thing the Tourette community knows, it's how to be empathetic and appreciate the stories of wrongly treated populations. Clearly the magnitude of protest we're seeing expressed in so many cities in recent days highlights how long the black community and other historically oppressed populations have asked broader society and its elected leaders to truly listen and take the need for meaningful, permanent change seriously, and how it can't wait any longer. Sure, there have been great strides toward a better world over the past few decades, but there's been a lot of comfortable pretending that it's all mission-accomplished; we're obviously not where we should be. There's a horrible passivity in letting the grievances of affected people be downplayed or, if listened to, quickly forgotten as news cycles move on to the next thing. I can't imagine how frustrating and painful it must be for deeply affected populations to see chances for change disintegrate as the world slips back into business as usual. I hope the energy we see right now clears that hurdle so our leaders from the federal to the household level take seriously the threat of racism and hatred, and how we're torn apart until we do.

Here's an analogy the Tourette community might be familiar with: the longer we suppress, the bigger or more pronounced the release tends to be. I hope what's happening now makes way for actual relief, and I hope our leaders do a lot better than form some temporary task force or one-off initiative just to say we've done something. In the words of George Carlin, "An initiative is an idea that isn't going anywhere." Change requires more than that. We all need to acknowledge that we don't understand as much as we think we do. We need to listen to difficult stories, and angle our minds toward acceptance and resolution when people have something to say. I'm proud to be part of a community that understands this. I (Ben, podcast host) and Sophia (discussion group admin) stand in solidarity with everyone listening and working to educate against racism, discrimination and willful ignorance. I'm always here to listen to you and I'm grateful for your commitment as well. Love to all of you. #blacklivesmatter #thanksforlistening

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!

In the first of a two-part season finale, we've got two special guests -- Tourette Association of America President and CEO Amanda Talty, followed by Matt Capriotti, a scientist whose research is furthering our understanding of TS and its impacts. Talty answers listener questions and talks about changes going at the Tourette Association to better support the TS community of all ages. Capriotti lays out findings from a recent study of life outcomes for people diagnosed with TS. This is massively interesting stuff with loads of points about people, awareness, and where we're headed.

Some Tourette organizations around the world:

https://tourette.org/ 

https://tourette.ca/ 

https://tourette.org.au/ 

http://www.tourettescotland.org/ 

https://www.tourettes-action.org.uk/ 

Study: Long Term Follow-Up of Patients with Tourette's Syndrome https://onlinelibrary.wiley.com/doi/pdf/10.1002/mdc3.12696