Tourette's Podcast

Rinada is a prime example of a hero parent cutting through the red tape to get her son the world he needs while also giving him the room to live it his own way. As a woman of color, she also underlines the importance of storytelling, because when you don't see yourself in the everyday conversation, the everyday portrayal, the everyday slate of leadership and authority, you can feel isolated, and it's not really made better when the inclusion doesn't capture the heart of the experience. Sharing your experience will help others in your community feel empowered to share their stories, too. PLUS: Answering a question about sleep, a trying not to interrupt Zoom meetings with vocal tics.

Webinar on TS and sleep (focusing on youth) with Dr. Emily Ricketts

The interview you're about to hear was recorded before the George Floyd news story and the subsequent demonstrations across the country. But it gets into some of the points that have been brought up with regard to the lack of certain life experiences in politics, or in government, or leadership or authority. Our guest this week, Justin Farmer, is a local elected official who's running for a state legislative seat, and his story of getting into public service involves his experience not only as a young black man but also as someone with Tourette Syndrome, who understands the disability community and being misjudged for outward characteristics.

Tourette's Podcast is made possible by the support of the Tourette Association of America, https://tourette.org.

https://tourette.org/awareness

Justin Farmer

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

Amanda Talty is back! The president and CEO of the Tourette Association of America talks ways to maximize Tourette Awareness Month, what's happening in the world that hopefully leads to an easier time discussing mental health, what happened at the recent TAA Virtual Conference, and what TAA's programming is focusing on. Plus - listeners questions for Ben: What's your most awkward tic? What's kept you busy during the quarantine? Also - masking tics with an actual mask. Oh, and if you musically inclined Touretters (or anyone else) want to submit Tourette's Podcast jingles, that's 100% welcomed.

Tourette's Podcast is made possible by the support of the Tourette Association of America, https://tourette.org/.

TAA Virtual Conference

"The Story of the Human Rubberneck" by Shaharah Gaznabbi

Dr. Christine Conelea is a star in the Tourette research field (and an important support beam for Tourette's Podcast in the process). She has an fun energy for tackling TS research questions, but isn't content letting the results of her work (or anyone else's) sit quietly in the vaults. Instead, she wants the Tourette community to know what questions the scientists are researching, and even question their relevance. How can scientists know what's really important to the people who live with the disorder they're studying? And how can the Tourette community better understand what scientists are doing? Dr. Conelea is all about the creating connections of mutual information to maximize benefits on both ends. Fascinating talk here with Dr. Conelea about Tourette research and how Touretters can help to advance it.

Tourette's Podcast is made possible by the support of the Tourette Association of America, https://tourette.org/.

@cconelea

Tourette scientists directory

https://www.treatingtourettetogether.org/

Lele Pons opens up about OCD, Tourette

TAA Virtual Conference

When Kyle was growing up, he experienced the very torment so many Touretters can relate to -- being bullied, being punished for tics, a lack of empathy within the family, et cetera -- and in turn vented angrily to the people around him. Once he noticed his young son, Bryson, was clearly displaying tics, Kyle was determined to give him a different outlook. Today, Bryson, 9, is a highly focused taekwondo competitor viewed as advanced for his age, so much that people around him view his Tourette as a strength. Posting videos of his training and words of Tourette positivity, Bryson has built a following on Instagram. Now, his entire town knows his face -- it's on a giant billboard advertising Tourette Awareness Month, which begins now -- May 15 -- and runs through June 15.

There is some discussion of CBD and marijuana in a medicinal sense on this episode. Remember, Tourette's Podcast is not a medical advice show; any discussions of medications or forms of treatment you hear on the show are just things we talk about in the course of discussing individuals' experience. We covered the question of marijuana for TS treatment in last week's episode.

In other news, the Tourette Association of America's Virtual Conference begins today (May 15). The two-day event has an amazing, stacked menu of sessions you'll benefit from.

Virtual Conference May 15 and 16

Bryson Jones on Instagram - @brysonjonests

Tourette Association of America (give your support!)

TAA position on medical marijuana

Virtual Quilt

Geeks Rising

A different kind of episode this week. After hearing from Touretters on the Tourette's Podcast Answering Machine, we talk Tourette science and medicine with one of the best -- Dr. John Walkup, Chair of the Pritzker Department of Psychiatry and Behavioral Health at the Ann & Robert H. Lurie Children's Hospital in Chicago, Illinois. We get his backstory, how he wandered into Tourette as a focus, and then we cover the most frequently asked question submitted to Tourette's Podcast -- what's the lowdown on marijuana as a Tourette treatment? Valid? Problematic? Needs work? Let's circle up and learn. In the second half of the episode, we talk anxiety science -- what's going on in our brains when we feel it? What's the use of it? Where can we take it? Hugely thankful to have Dr. Walkup guide us through.

Tourette's Podcast is made possible with the support of the Tourette Association of America.

Dr. John Walkup

Tourette Association of America (give your support!)

TAA position on medical marijuana

Virtual Conference May 15 and 16

Virtual Quilt

Geeks Rising

When Ben was in the hospital (as talked about on Episode 0 of this season), one of the things that got him through was a book called "Twist and Shout: An Awkward Life With Tourettes." The author, Tyler Oberheu, had loaded it with stuff to laugh or nod over. On every page. Snarky angles. Oddities. Trials. Existential silly-string. That "can this be real?" feeling. And some warm, honest takes on what the point of all this might be. On this episode, we hear from the author himself, who immediately conveys that the personality he shows us in the book is sincere. Tyler also discusses his own time in the hospital.

Tourette's Podcast is made possible with support from the Tourette Association of America, tourette.org.

Twist and Shout: An Awkward Life With Tourettes

Tourette Association of America Virtual Conference May 15-16

Geeks Rising

Matt Sawyer AKA noMad is a rapper from St. Paul, Minnesota who hadn't put much thought into writing anything about Tourette Syndrome until his producer told him to. Seems like it would be a challenge to condense a life of experience with TS, associated school-ground ridicule and personal healing into a radio-length song. But he'd spent a lot of time learning himself, and the instincts poured out of him. This conversation captures a lot of what orbited that process and how it's good to evaluate ourselves and whether we're doing what we want or what society wants. The measures of prestige sometimes have nothing to do with our own personal quests, Matt points out. Major takeaways here. Do not miss this episode.

Tourette's Podcast is made possible with support from the Tourette Association of America, tourette.org.

noMad

"Ticcin'" music video

Tourette Association of America Virtual Conference, May 15-16

TAA website and COVID-19 resources

Geeks Rising

Daisy is a solid mom. She didn't let all the Tourette-flattening forces of the world set the course for her 8-year-old son, Angel, who was diagnosed with TS about a year ago. Even the diagnosis was a migraine, coming with some odd advice about what the world would be like for Angel. Daisy shut it down, did what solid parents do and figured out how to give her child a world he could shape for himself. This is a highlight episode, especially for parents but certainly for everyone.

Plus: An update on Treating Tourette Together. A reminder about the Tourette Association of America's Inaugural Virtual Conference, FREE, May 15-16. And your voices on the Tourette's Podcast Answering Machine. Have a message to leave? Record it (you can do it on your phone's voice memo app) and send it to [email protected].

Tourette's Podcast is made possible with support from the Tourette Association of America, tourette.org, and is part of the Geeks Rising podcast network, geeksrising.com.

Links:

Treating Tourette Together Community Report https://view.publitas.com/tourette-association-of-america/ttt-community-report/page/1

https://www.treatingtourettetogether.org/

https://www.facebook.com/groups/664680327265761/

https://tourette.org/ https://tourette.org/about-tourette/virtual-conference/

https://www.geeksrising.com/

https://www.patreon.com/tourettespodcast