Podcasts about tourette association

Alex speaks to Amanda Talty, President and CEO of the Tourette Association, about bringing awareness to the disorder and how the organization helps those dealing with it.

There is a lot of misinformation and stigma around neurodivergence that can create extra barriers and challenges for our families. This is especially true for Tourette syndrome, which is often referred to as “the most misunderstood well-known condition,” often the punchline of jokes on late-night TV and sitcoms. Its in large part because of these misconceptions and difficulty accessing resources that my guest today, Michele Turk, found herself at a loss when her 11 year old son Michael was diagnosed with Tourette. In her new memoir, What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome, she writes vulnerably about the challenges they faced as a family in getting the right support, navigating school, social, emotional, and academic challenges, and how she evolved from thinking she had to fix Michael to understanding her job was to accept him and help him do the same. She wanted the world to know he was so much more than the boy who shouted obscenities hundreds of times a day. Because Michele has worked as a journalist for three decades, covering parenting, health, and education for outlets like Parents, Parenting, Elle, USA Weekend, The Washington Post, Brain, Child, and Next Avenue, she was compelled to write about her journey as she was in it, and that close up, honest perspective, blended with ample reporting on Tourette make What Makes Him Tic a compelling and informative read. In this episode, Michele talks with us about the misconceptions about Tourette's that she came across often in her work as a journalist and her private life as a parent. We also talked about what some of the early symptoms were and how they managed them, how differently she and her husband approached the diagnosis and what it took for them to get on the same page, how her son's diagnosis impacted her daughter, and more.   Things you'll learn How parenting a child with Tourette syndrome be challenging and isolating, and why is it important to trust your gut and seek appropriate medical care What the most common misconceptions of Tourette are What makes navigating the school system so challenging for children with Tourette Ideas for navigating complex sibling dynamics in a mixed neurotype household How finding a passion or interest can help build self-esteem and provide a sense of belonging for children with Tourette   Resources mentioned Michele Turk's website What Makes Him Tic?: A Memoir of Parenting a Child with Tourette Syndrome by Michele Turk Yale Child Study Center Tic and OCD Program Designated Center of Excellence Debbie and Her Husband Derin Talk About Their Journey of Parenting a Differently Wired Child (Tilt Parenting episode) Tourette Association of America Tourette Association Conference (Tic Con) Dr. Robert King Billie Eilish on Living with Tourette Syndrome (Harper's Bazaar) How American Idol's James Durbin Manages Life With Tourette's and Asperger's (Tourette Association of America)   Learn more about your ad choices. Visit megaphone.fm/adchoices

Imagine a world where children with OCD and Tourette's can manage their symptoms without relying solely on medications. In this episode of Pediatric Meltdown, we explore innovative interventions like Habit Reversal Training and ERP Therapy that offer new hope for young patients. Dr. Lia's guest is a listener's favorite, Dr. Colleen Cullinan. She has a gift for taking you inside the child's mind and telling you exactly what they're thinking. She'll talk about the profound impact of intentional, compassionate care and the crucial role of family support in the treatment process. Tune in to discover effective strategies for tackling the emotional and psychological struggles these children face and how these methods pave the way for lasting improvements. [03:13 -17:21] Understanding Isolation and Negative Reinforcement in Mental HealthConcept of breaking the cycle of negative reinforcement and the importance of compassionate interventions.Connection between emotional regulation in various scenarios and therapies like cognitive behavioral therapy and acceptance and commitment therapy.Discussion on how the brain's problem-solving nature struggles with internal experiences, leading to anxiety.Therapies offer solutions that counter the brain's intuitive problem-solving approach.[17:22 - 29:42] Exposure and Response Prevention (ERP) for OCD Emphasis on intentionally facing fears without engaging in compulsive behaviors.Insights into how ERP can be rewarding for families affected by OCD.Challenges and solutions in treating internal obsessions and related mental compulsions.Significance of ERP in helping individuals understand their fears are not dangerous.[29:43 - 41:52] Nonpharmacologic Therapies for OCD, Tics, and Tourette'sOverview of therapies like exposure and response prevention, habit reversal training, and comprehensive behavioral intervention for tics.Discussion of the non-logical and visceral nature of these behaviors and breaking the cycle of negative reinforcement.Strategies for managing compulsive skin picking, including competing responses and awareness.Practice and gradual exposure to triggers as critical parts of treatment.[41:53 - 55:12] Resources and Tools for Comprehensive Behavioral Intervention for TicsIntroduction to CBIT as a detailed treatment involving awareness building and breaking down tics.Challenges in finding CBIT-trained therapists and resources to locate such providers.Mention of the Tourette Association of America and the TLC Foundation for Body Focused Repetitive Behaviors.University training programs in clinical psychology as potential access points for therapists trained in habit reversal training.[55:13 - 59:58] Closing segment TakeawaysLinks to resources mentioned on the showInternational OCD Foundation: https://iocdf.org Tourette's Association of America: https://tourette.orgTLC Foundation for Body-Focused Repetitive Behaviors https://www.bfrb.orgAACAP Facts for Families OCD:

Dr. Dan interviews author and journalist Michele Turk about her memoir What Makes Him Tic? A Memoir Of Parenting A Child With Tourette.  When Michele Turk's 11-year-old son, Michael, was diagnosed with Tourette syndrome, she made it her mission to show him – and others – that he was so much more than the boy with tics who shouted obscenities hundreds of times a day.   On today's first-ever episode about Tourette Syndrome, Dr. Dan and Michele's honest and poignant conversation will uplift, educate, and inspire special needs parents everywhere. This interview coincides with the Tourette Association of America's Tourette Syndrome Awareness Month (May 15 - June 15) and TAA's national TIC-CON24 conference where Michele and her son Michael are speakers. A journalist for three decades, covering parenting, health, and education, Michele Turk's articles have appeared in BusinessWeek, Parents, Parenting, Elle, USA Weekend, The Washington Post, and Brain, Child. For more information visit her website www.micheleturk.com. For information about Tourette syndrome go to www.tourette.org.    Email your parenting questions to Dr. Dan podcast@drdanpeters.com (we might answer on a future episode).  Follow us @parentfootprintpodcast (Instagram, Facebook) and @drdanpeters (X). Learn about more podcasts @exactlyright on Instagram. Please listen, follow, rate, and review on Apple Podcasts, Spotify, or wherever you listen to podcasts. Please support our podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/4bqTWJ2 For more information: www.exactlyrightmedia.com  www.drdanpeters.com Learn more about your ad choices. Visit megaphone.fm/adchoices

It's a whole new season of Tourette's Podcast! Ben is back at the interview mic with two very special guests who bring us a path-altering twist. On this episode, we pass the torch to your amazing new hosts from the Tourette advocacy world: Britney Wolf and Jhonelle Bean. After a bit of hello and reintroduction, Ben, Britney and Jhonelle get to the classic Touretter conversation that this podcast has been about from the start. Enjoy, relate, share, and please show your love for Britney and Jhonelle as they take over and expand perspective on the Tourette community's favorite podcast. This is an awesome development. For more information and resources regarding Tourette Syndrome and other tic disorders, visit the Tourette Association of America at tourette.org. Fight stigma, raise awareness, expand community.

CTL Script/ Top Stories of March 23rd             Publish Date: March 22nd             From the Ingles Studio Welcome to the Award-Winning Cherokee Tribune Ledger Podcast    Today is Saturday, March 23rd and Happy 71st Birthday to singer Chaka Khan. ***03.23.24 - BIRTHDAY - CHAKA KHAN*** I'm Keith Ippolito and here are the stories Cherokee is talking about, presented by Credit Union of Georgia.  Woodstock Man Convicted of Strangling Child A Farming Family's Legacy in Cherokee's Salacoa Community Woodstock Named to Smart21 Communities   We'll have all this and more coming up on the Cherokee Tribune-Ledger Podcast, and if you're looking for Community news, we encourage you to listen and subscribe!    Commercial: CU of GA STORY 1: Woodstock Man Convicted of Strangling Child Andres Felipe Sierra of Woodstock was convicted by a Cherokee County jury on March 21 of multiple child abuse charges, including strangling a child. The charges, stemming from a Woodstock Police Department investigation, relate to an incident on February 26, 2023, in the Towne Lake area. Sierra was found guilty of family violence aggravated assault by strangulation, family violence battery, cruelty to children, and reckless conduct. The jury heard testimony from 11 witnesses during the four-day trial, including the victims, law enforcement officers, and medical professionals. Sierra was convicted on one count of aggravated assault, while the jury found him not guilty on another count and convicted him of reckless conduct on the third. A sentencing hearing is scheduled for May 8. STORY 2: A Farming Family's Legacy in Cherokee's Salacoa Community John Bennett Jr., a longtime resident of Cherokee County's Salacoa community, continues his family's farming legacy in the area. He, along with his wife Joy Adams-Bennett, resides on Salacoa Road, where they raise cattle on their farm. Bennett's family has deep roots in the community, dating back to 1846. He grew up in the area, spent time studying at local colleges, and eventually returned to continue the family's farming tradition. Bennett reminisces about the area's agricultural past, including the transition from cotton and corn farming to poultry production. Despite changes over the years, Bennett remains committed to preserving the rural character of the Salacoa community and passing down the farming legacy to future generations, including his son-in-law who will eventually take over managing the cattle operation. STORY 3: Woodstock Named to Smart21 Communities Woodstock has been recognized as one of the world's Smart21 Communities of 2024 by the Intelligent Community Forum (ICF). The city received this honor at the Smart Cities and Intelligent Communities Conference in Taipei, Taiwan. Woodstock is a semifinalist in the ICF's annual awards program, with the winner to be announced at the ICF Summit in November. The Smart21 communities have demonstrated their commitment to building inclusive economic prosperity, social health, and cultural richness. Woodstock Mayor Michael Caldwell expressed pride in representing Georgia alongside fellow honoree Warner Robins and highlighted the city's efforts to improve citizens' quality of life through smart technology initiatives. Woodstock's SMART Program focuses on various aspects, including transportation systems and innovative infrastructure technology. We have opportunities for sponsors to get great engagement on these shows. Call 770.874.3200 for more info.    Back in a moment  Break:  DRAKE – HENRY CO SHERIFFS   STORY 4: Highway 140 Could Get a New Traffic Signal by End of 2024 The Cherokee County Board of Commissioners approved a $10,995 amendment to an agreement with Keck and Wood, Inc. for a traffic signal at Highway 140 and Stringer Road intersection. The original agreement was for a traffic signal warrant study, which determined that a signal is warranted to improve traffic flow. Keck and Wood completed the study and began designing the signal. The amendment covers additional engineering and survey work needed to finalize the signal plans. The design has been submitted to the Georgia Department of Transportation for approval. The county anticipates the signal to be operational by the end of the year, pending GDOT's review. STORY 5: Cherokee County Teen Named Tourette Association of America Youth Ambassador Gavin Letendre, a 15-year-old from Cherokee County, has been chosen as one of 64 youth ambassadors for the Tourette Association of America. He represented the association during National Advocacy Day in Washington, D.C., advocating for policies and services for people with Tourette Syndrome (TS) and tic disorders. Letendre aims to raise awareness and promote understanding of TS, which affects about 1 in 50 school-aged children in the U.S. As a youth ambassador, he received training on public speaking about the disorder. Letendre also educates his peers and local community about TS symptoms and acceptance through presentations at schools and community centers. His efforts contribute to increasing awareness and reducing isolation among individuals affected by TS. Commercial: INGLES 9 STORY 6: Over 40 Miles of Cherokee's Roads Scheduled for Resurfacing or Restriping Cherokee County commissioners approved a $5.7 million construction agreement with Bartow Paving Company for a countywide road resurfacing project, covering approximately 14 miles of county-maintained roads. The project, in partnership with Canton, Holly Springs, and Woodstock, includes resurfacing main roadways like Union Hill Road and Avery Road, along with various subdivisions. Funding, largely from a Georgia DOT grant and Special Purpose Local Option Sales Tax, will cover the majority of costs. Additionally, the county approved a $222,145 agreement with TRP Construction Group for traffic striping on nine roadways totaling 25.8 miles, using GDOT funds and a local match requirement. These projects aim to improve road safety and infrastructure in the county and are slated for completion by September. STORY 7: Private-School Vouchers Win Final Passage from General Assembly The Georgia Senate passed controversial legislation for private-school vouchers, with a 33-21 vote along party lines. The bill limits voucher spending to 1% of Georgia's education funding formula, with a cap of $140 million annually, targeting families earning up to 400% of the federal poverty limit. Proponents argue it aids working-class families, but critics, including Democrats, contend $6,500 vouchers aren't sufficient and divert funds from public schools. The bill also includes provisions on teacher pay raises and pre-kindergarten facilities. Governor Kemp, a supporter, is expected to sign the bill into law, prioritizing vouchers as part of his education agenda. We'll have closing comments after this.    COMMERCIAL: ATL HEALTH FAIR   SIGN OFF –   Thanks again for listening to today's Cherokee Tribune Ledger podcast. . If you enjoy these shows, we encourage you to check out our other offerings, like the Marietta Daily Journal Podcast, the Gwinnett Daily Post, the Community Podcast for Rockdale Newton and Morgan Counties, or the Paulding County News Podcast. Get more on these stories and other great content at tribune ledger news.com. Giving you important information about our community and telling great stories are what we do.     Did you know over 50% of Americans listen to podcasts weekly? Make sure you join us for our next episode and be sure to share this podcast on social media with your friends and family. Add us to your Alexa Flash Briefing or your Google Home Briefing and be sure to like, follow, and subscribe wherever you get your podcasts.   Produced by the BG Podcast Network   Show Sponsors: ingles-markets.com drakerealty.com cuofga.org henrycountysheriffga.gov acc.org/ATLHealthFair   #NewsPodcast #CurrentEvents #TopHeadlines #BreakingNews #PodcastDiscussion #PodcastNews #InDepthAnalysis #NewsAnalysis #PodcastTrending #WorldNews #LocalNews #GlobalNews #PodcastInsights #NewsBrief #PodcastUpdate #NewsRoundup #WeeklyNews #DailyNews #PodcastInterviews #HotTopics #PodcastOpinions #InvestigativeJournalism #BehindTheHeadlines #PodcastMedia #NewsStories #PodcastReports #JournalismMatters #PodcastPerspectives #NewsCommentary #PodcastListeners #NewsPodcastCommunity #NewsSource #PodcastCuration #WorldAffairs #PodcastUpdates #AudioNews #PodcastJournalism #EmergingStories #NewsFlash #PodcastConversationsSee omnystudio.com/listener for privacy information.

Award-winning writer/director Dale Peterson is the writer/director/creator of the exciting new television series In Through the Out Door,” a time travel horror-thriller starring Martin Copping (Call Of Duty), Jesse. C Brown (Halloween Ends), Christina Kilmer (High Holidays) and Garrett M. Brown (Kick-Ass). One of Peterson's notable achievements came in 2016 with the completion of his feature film, Hello, My Name is Frank, starring Garrett M. Brown (Kick-Ass), Rachel DiPillo (Chicago Med), Hayley Kiyoko (Insidious: Chapter 3) and Travis Caldwell (The Magnificent 7) which is an uplifting story about a recluse with severe Tourette Syndrome who is dragged on a road trip with three teenage girls. The film garnered critical acclaim, winning seven awards in six festivals, including Best Dramatic Feature and Best Actor at the Manhattan Film Festival. It also received the prestigious Best Feature honors at the international Tourette Film Festival. Peterson's sensitive and accurate portrayal of a man with Tourette's earned the film an unprecedented endorsement by the Tourette Association of America, further solidifying his impact as a filmmaker. Peterson has dedicated himself to writing screenplays and directing his own films and TV pilots. His documentary I'm Gonna Do It Until The Day I Die won Best of Fest at the Arizona Underground Film Festival and Best Short at the Charlotte and Detroit Film Festivals in 2009. In 2011, his film Hard to Come By earned seven awards at nine festivals, including Best Short at the Manhattan and Palm Beach International Film Festivals, and he received the Best Director award at the Los Angeles ITN Film Festival. In addition to his work in music videos, Dale Peterson has made significant contributions to the world of filmmaking. He produced Bring Your Best, a nationally-acclaimed documentary about homelessness in LA's Skid Row, shedding light on an important social issue. During the '90s, he captured the return of wolves to Yellowstone National Park in National Geographic: Wolves, a Legend Returns to Yellowstone, and delved into the rich talent of poets and musicians in the LA coffeehouse scene in Halo in My Coffee (executive produced by Steve Martin). Originally from Detroit, Dale started his career in entertainment by producing, writing, directing, shooting, and editing over 100 music videos for Detroit and Los Angeles record labels and bands including The Melvins and Alice in Chains.

Every day is difficult for Mercedes O'Dell after she was diagnosed with Tourette's at 14 years old. Many people didn't believe her at first, including her teachers and parents. Now she's a youth ambassador for the Tourette Association of America and even got to speak to lawmakers on Capitol Hill.

The Hollywood depictions of Tourette Syndrome don't tell the whole story. On May 15, the Tourette Association of America will kick off a month-long campaign to raise awareness for this somewhat misunderstood neurodevelopmental disorder. To show our support and explore the ways that Tourette affects and presents in different people, we spoke with SMB Service Specialist Claudine Venuto and her son Nick. Nick has Tourette Syndrome and served as a Youth Ambassador for Tourette Association of America in South Carolina.

It's a moving season finale episode talking with guest Allen Shoaff (a Tourette Association Rising Leader and Youth Ambassador) after highlighting the upcoming Tic Con and a dedication to a Touretter the community recently lost. A subsequent project seeks to build a top-class treatment facility for complex cases of Tourette.  Thanks so much to the Tourette Association of America for making another season of episodes possible.  Tw: Some discussion of suicide, suicidal ideation, depression during our conversation with Allen.  Condolences to the family and friends of Ryan "Larry" Lawrence. Obituary with clinic donation info.  Tic Con - https://touretteconference.org/ 

Caleb Glisson, a high school student from Woodstock, recently completed training as a youth ambassador for the Tourette Association of America. Glisson was selected along with 60 other students from around the country to attend the training in Washington, D.C. After completing training in how to tell their story of life with Tourette Syndrome, and how to accurately advocate for the Tourette community, the students met with lawmakers on Capitol Hill. #CherokeeCounty #Georgia #LocalNews           -          -          -          -          -          -          The Cherokee Tribune Ledger Podcast is local news for Woodstock, Canton, and all of Cherokee County. Register Here for your essential digital news.             This podcast was produced and published for the Cherokee Tribune-Ledger and TribuneLedgerNews.com by BG Ad Group     For more information be sure to visit https://www.bgpodcastnetwork.com/    https://cuofga.org/   https://www.drakerealty.com/   https://www.esogrepair.com/         See omnystudio.com/listener for privacy information.

You've probably heard about Tourette Syndrome and the tics associated with it. Listen as we learn more about the disease, and an organization that provides support for children, families and adults with Tourette Syndrome and Tic Disorders across the nation. Dr. Jeanine Cook-Garard talks with Amanda Talty, the President and CEO of the Tourette Association of America.

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

On Episode 5 of The Lift Up Podcast your host Sophie Packer was joined by the lovely Christy Mazzarisi. Christy is the Senior Director for Quality Compliance at Mersana Therapeutics and the chair for the ASQ Women in Quality Network. She is also a small business owner and entrepreneur, and heavily active in the world of nonprofits, particularly the Tourette Association of America and Make A Wish Foundation. She's the mother of two boys, both of whom were diagnosed with Tourette's at age three leading to Christy's passion for neurodiverse advocacy. She supports causes and raises awareness to create a better future for her children. Christy is an incredibly driven and passionate woman with a wealth of experience both in and out of work. We spoke about leadership, advocacy and empathy in this moving episode. Enjoy!

We welcome back to the podcast Amanda Talty, president and CEO of the Tourette Association of America. We talk about what TAA has been up to, the upcoming TAA gala (Nov. 10 in NYC), science and research, and more. Don't miss this one! Plus: A question from a parent about a situation at school.  Tourette Gala, Nov. 10 in NYC TAA's YouTube  Update on wearable devices for Tourette Amanda's bio

Saira Nagda is a high school senior, looking towards her future and making a difference in her community.She is a captain of her Varsity Cross Country and Track Team.  She is on the leadership board for her school's One Love Club, which educates students on what are healthy and unhealthy relationships.She founded the non-profit organization, RePlay-It, which collects gently used and new sports equipment and distributes it to children globally to encourage more involvement of sport, especially for young girls.And she has Tourette Syndrome.  Diagnosed at age 7, Saira now serves as a Youth Ambassador for the Tourette Association of America, where she helps educate others on, and dispel the myths about Tourette Syndrome.I'm so grateful to Saira for sitting down with me to have a conversation about Tourette Syndrome; what it is, what it isn't, and how it has helped form her into the activated and incredible young woman she is today.  Support the show:https://www.neuroversitypod.com/resources

We start this week with some breaking news from the Tourette Association of America: a Tourette Syndrome research study from the CDC has just landed, and it concludes that the prevalence numbers for Tourette Syndrome and persistent tic disorders are double what we previously thought. One in 50 school-age children has Tourette or a persistent tic disorder. Read more.  Our conversation this week is with superb guest host Jhonelle and an excellent guest Touretter named Shawna -- the two of them met at the Tourette Association of America's recent annual conference in Minneapolis, Minnesota, and continue to get to know one another here, with all levels of relatability. The hard times, the upsides, everything real.  And a listener question -- can Tourette positivity go too far? 

Tourette Syndrome is a condition of the nervous system. It is a neurological disorder that involves often sudden and repetitive movements, twitches, or unwanted sounds (tics) that cannot be easily controlled. Statistics show that around one in five children with Tourette Syndrome also meets the criteria for Autism. All the research that I have done, says that it is unlikely that so many children have both disorders but instead, Tourette's symptoms often mimic or seem quite similar to those of autism. No one knows exactly what causes tics to occur and they often change in type and intensity. You will usually notice that they might increase in times of excitement, anxiety, anticipation, stress, AND sleep deprivation. They can also change over time and appear, disappear and reappear, they are considered chronic. Screen time on electronic devices increases dopamine and tics are dopamine-related so if your child is using electronics in excess and experiencing tics, whether they are vocal or motor, I really would like to encourage you to evaluate their screen time and consider lessening their daily time. If your child's tics are negatively impacting their education in the educational setting, we recommend that you request a meeting to discuss the possibilities of a 504 plan or an IEP to give them the necessary accommodations or services to help them. Have you checked out our PRIVATE SISTERHOOD? You should see all the training, resources, coaching, and above all, community inside. We are an amazing group of women who are all traveling this unique autism parenting journey and we would love you have you join us. Get all the details at www.notyouraverageautismmom.com Additional Resources: https://www.notyouraverageautismmom.com/blog/electronics-and-the-benefits-of-setting-screen-time-limits https://www.notyouraverageautismmom.com/blog/72-ripping-the-band-aid-off-on-electronics You can contact the Tourette Association at www.tourette.org or by calling 888-4TOURET. HBO documentary, I Have Tourette's but Tourette's Doesn't Have Me

Episode Notes In episode 296, I sit down with Max Charney, a trans teen living with Tourette's, and a Youth Ambassador of Tourette Association of America.  We talk about teenagehood with Tourette's, misconceptions, dating, disability and a whole lot more.  Enjoy!  You can follow Max on Instagram here: instagram.com/maximus__ts  Apply now to be on Disability After Dark by e-mailing disabilityafterdarkpod@gmail.com or going to this link: https://calendly.com/disabilityafterdarkpod/disabilityafterdark  Support Bump'n and donate so everyone can access self-pleasure by going to  www.getbumpn.com  Hire Kristen Williams for disability centric therapy by e-mailing kristen.williams10@gmail.com  You can buy DISABILITY AFTER DARK themed MERCH HERE.  Support Disability After Dark on Patreon at patreon.com/disabilityafterdark   This podcast is powered by Pinecast.

The Tourette community lost a hero Dec. 15, someone I named on the very first episode (Season 1, Episode 0) of Tourette's Podcast. Steve Bachner was my first frame of reference for TS. Seeing him on an episode of 20/20 in the late 1980s was my first time seeing someone else with the disorder, and there he was, Steve, being followed by John Stossel and cameras, in a shopping mall, Steve ticcing to the fullest. I remember being a little kid guffawing at people's reactions to Steve, with a least one citizen observer telling the show he assumed he was probably high on drugs. The observer wouldn't have guessed Steve was living with a disorder that throws involuntary sounds and movements. I knew all about it. I met Steve not long after at a national Tourette Association of America (then called the Tourette Syndrome Association) conference and confirmed his heroism to me. Steve was kind, funny, witty, and willing to be talk to me like a human being. I never forgot it. We reconnected after I started Tourette's Podcast in 2018 and always talked about doing an interview. Sadly, Steve's health was declining; scheduling would be hit or miss, with very wide latitude granted to all the rest and recuperation time he needed. But we eventually, in May 2020, found the chance to record. It wasn't our dream interview; it would have been but the phone line was noisy and made listening a challenge. But, after some audio cleanup, and now in Steve's memory, it's here and it covers a lot of amazing ground. This is old-school Tourette Syndrome, with critical cracks at sensational coverage from Stossel, Geraldo, Springer and others who orbited Steve's disorder. They got to know his Tourette (or maybe a thin dimension of it) but did they ever get to know him as a person? (His friend Robin Williams did; Steve describes him here as a "soulmate.") I'm so lucky to have counted him a hero and saddened at his absence now. So this one is dedicated to the loving memory of Steve Bachner.

The Season 7 finale episode. Our guest is Tourette scientist Dr. Flint Espil, who talks with us about the latest Tourette treatments and questions before saying something we weren't expecting. In a great way. Thanks so much to Gogo, Maddie, Johnelle, Tamara, Davide, Dan, Amelie, Winter, Jack, Mark, Sophia, Shamus, Saddiq, Christine, Harper, Flint, the other Sophia, the Tourette Association of America, Geeks Rising and so many other people who've been on or closely involved with the podcast. My mind is pried wider every day with your help. This has been the most rewarding and humbling season for me. Thank you, everyone, for listening. -Ben Dr. Flint Espil on Twitter Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support! Tourette Gala is Oct. 28 You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast Tourette's Podcast Discussion Group on Facebook

Taking risks is ... risky. Might fail, right? You don't just suddenly decide to move from, say, the midwest to Los Angeles to try and turn your talents into a rewarding career. And, lord have mercy, having something like Tourette Syndrome and comorbids like anxiety doesn't help, does it? For pop singer Harper Starling, it did. This is, in fact, her story. She uprooted, made a long trek to L.A., where she knew no one, and, as we speak, is now preparing for a three week tour of England. Harper directly credits Tourette Syndrome for where she is right now in her singing career, which include a single out now called "Not Another What If" and another soon to debut. She's really forthcoming and direct in her music and that carries through this conversation. Hat-tip to Harper's manager, the very cool Cindy Valentine, for helping to coordinate this one. https://www.harperstarling.com/# Tourette's Podcast is made possible by the Tourette Association of America, tourette.org. Support! Tourette Gala is Oct. 28 You can give Tourette's Podcast individual support at https://www.patreon.com/tourettespodcast Tourette's Podcast Discussion Group on Facebook  

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) 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

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. @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 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

In this episode of Psych Matters, Dr Andrew Amos and Professor Valsamma Eapen discuss the neurodevelopmental disorder, Tourette Syndrome.Professor Valsamma Eapen is Professor and Chair of Child and Adolescent Psychiatry, UNSW Sydney and Head, Academic Unit of Child Psychiatry and Director of BestSTART Child Health Academic Unit at South West Sydney. She is Director of Early Years Program, Autism Cooperative Research Centre and Stream Director of Early Life Determinants of Health Clinical Academic Group within SPHERE, a NHMRC accredited Advanced Health Research Translation Centre.  She is known internationally for her expertise in neurodevelopmental disorders such as autism and Tourette Syndrome. She is part of major research programs totalling 40 million in funding and has authored over 300 peer reviewed publications.Links:Gilles de la Tourette syndromehttps://www.nature.com/articles/nrdp201697Nature Reviews Disease Primers 3, Article number: 16097 (2017)volume 3, Article number: 16097 (2017) https://www.nature.com/nrdp/Tourette Syndrome in children. Valsamma Eapen and Tim Usherwood, Australian Journal of General Practice , 50 (3), 120-125 (2021).https://www1.racgp.org.au/ajgp/2021/march/tourette-syndrome-in-children Children with Tourette Syndrome and Covid-19https://tourette.org.au/wp-content/uploads/2020/04/TS-COVID-19_Resource_2020.pdf Tourette Syndrome Association of Australiahttps://tourette.org.au/ Tourette Association of Americahttps://tourette.org/ Feedback:If you have a topic suggestion or would like to participate in a future episode of Psych Matters, we'd love to hear from you.Please contact us by email at: psychmatters.feedback@ranzcp.orgDisclaimer:This podcast is provided to you for information purposes only and to provide a broad public understanding of various mental health topics.  The podcast may represent the views of the author and not necessarily the views of The Royal Australian and New Zealand College of Psychiatrists ('RANZCP'). The podcast is not to be relied upon as medical advice, or as a substitute for medical advice, does not establish a doctor-patient relationship and should not be a substitute for individual clinical judgement.  By accessing The RANZCP's podcasts you also agree to the full terms and conditions of the RANZCP's Website. Expert mental health information and finding a psychiatrist in Australian or New Zealand is available on the RANZCP's Your Health In Mind Website.

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/ 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 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 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

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

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

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

Daniél joins us to share how crucial it is for parents to advocate for their children (within the school system) and more importantly, teach their children the importance and the value of self-advocacy. Parents have a responsibility to be a voice for their children but to also teach their children how to speak up (and out) for themselves, in a way that achieves its goal while still remaining pleasing to God. This program is underwritten by the Alliance for Shared Health. Check out how you can cut your health insurance premiums by 40-60% by joining a health sharing alliance. ASH is that option!! Learn more... (http://www.ashcommunity.org/Stacy-on-the-right/) Please check out our newest sponsor, Thrivent Financial! Are you interested in a career with meaning and purpose? As a Thrivent financial advisor, you can combine your values, drive and skills to create a rewarding career helping others reach their financial goals. At Thrivent you'll have the support of a Fortune 500 company backed by a 100-year legacy. to explore what it means to do work that matters email david.sampl@thrivent.com or Visit Thrivent.com/careers Download our latest PDF Guide at: GUIDE: Talking to your high schoolers about politics!! (https://familyvisionmedia.org/guide) Thank you for listening!! We are live Monday through Friday from 9p to midnight eastern on SiriusXM the Patriot channel 125!!! Donate to support the show here: paypal.me/stacyontheright Or join our Patreon: patreon.com/stacyontheright Thanks and God Bless ya!! -- Spiritual Encouragement -- For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. —Jeremiah 29:11 -- Stacy's Stash! -- For links to the articles and material referenced in this week's episode check out this week's page from our podcast dashboard! -- Get More Stacy -- Stacy's Blog (http://www.stacyontheright.com) Watch the show live, download previous episodes, and more Stacy! Contact Stacy stacy [at] stacyontheright.com -- Connect with Stacy -- Follow Stacy on Twitter (https://twitter.com/stacyontheright) Follow Stacy on Facebook (https://www.facebook.com/stacyontheright971/)

Daniél joins us to share how crucial it is for parents to advocate for their children (within the school system) and more importantly, teach their children the importance and the value of self-advocacy. Parents have a responsibility to be a voice for their children but to also teach their children how to speak up (and out) for themselves, in a way that achieves its goal while still remaining pleasing to God. This program is underwritten by the Alliance for Shared Health. Check out how you can cut your health insurance premiums by 40-60% by joining a health sharing alliance. ASH is that option!! Learn more... (http://www.ashcommunity.org/Stacy-on-the-right/) Please check out our newest sponsor, Thrivent Financial! Are you interested in a career with meaning and purpose? As a Thrivent financial advisor, you can combine your values, drive and skills to create a rewarding career helping others reach their financial goals. At Thrivent you'll have the support of a Fortune 500 company backed by a 100-year legacy. to explore what it means to do work that matters email david.sampl@thrivent.com or Visit Thrivent.com/careers Download our latest PDF Guide at: GUIDE: Talking to your high schoolers about politics!! (https://familyvisionmedia.org/guide) Thank you for listening!! We are live Monday through Friday from 9p to midnight eastern on SiriusXM the Patriot channel 125!!! Donate to support the show here: paypal.me/stacyontheright Or join our Patreon: patreon.com/stacyontheright Thanks and God Bless ya!! -- Spiritual Encouragement -- For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. —Jeremiah 29:11 -- Stacy's Stash! -- For links to the articles and material referenced in this week's episode check out this week's page from our podcast dashboard! -- Get More Stacy -- Stacy's Blog (http://www.stacyontheright.com) Watch the show live, download previous episodes, and more Stacy! Contact Stacy stacy [at] stacyontheright.com -- Connect with Stacy -- Follow Stacy on Twitter (https://twitter.com/stacyontheright) Follow Stacy on Facebook (https://www.facebook.com/stacyontheright971/)

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.

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

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 parent of a 13-year-old with TS is doubting her ability to help. And a few science facts that Touretters should know. Jhonelle on Instagram Dr. Christine Conelea (TS scientist) 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

Studies have estimated that 1 of every 162 children (0.6%) have Tourette's Syndrome (TS). A CDC study using parent reports found that 1 of every 360 (0.3%) children 6 – 17 years of age in the US have received a diagnosis of TS; this is about 138,000 children.The Tourette Association of America (TAA) is working hard to increase social acceptance and tolerance for people with Tourette Syndrome. People with Tourette Syndrome have long been misunderstood and mocked for their uncontrollable symptoms which can lead to long-term effects on their mental health. It is estimated that 1 million Americans are living with Tourette Syndrome or a Tic Disorder – and an alarming 50% are going undiagnosed. The complexities of this disorder leave the community misunderstood, overlooked, and mocked for their uncontrollable symptoms.Amanda Talty is the CEO/President of The Tourette Association of America and joins us today to tell us more about her role with the organization, working to reduce stigmas around Tourette's, ticks and picking up on possible signs of the syndrome in children.  Want better health and nutrition? Now you can get personalized supplement recommendations and custom vitamin packs delivered to your door! Go to PersonaNutrition.com/Roizen and take your free assessment and get 50% off your order today. - sponsor  BonusHow Your Diet Affects Your Risk for Cancer

Studies have estimated that 1 of every 162 children (0.6%) have Tourette's Syndrome (TS).Studies have estimated that 1 of every 162 children (0.6%) have Tourette's Syndrome (TS). A CDC study using parent reports found that 1 of every 360 (0.3%) children 6 – 17 years of age in the US have received a diagnosis of TS; this is about 138,000 children.The Tourette Association of America (TAA) is working hard to increase social acceptance and tolerance for people with Tourette Syndrome. People with Tourette Syndrome have long been misunderstood and mocked for their uncontrollable symptoms which can lead to long-term effects on their mental health. It is estimated that 1 million Americans are living with Tourette Syndrome or a Tic Disorder – and an alarming 50% are going undiagnosed. The complexities of this disorder leave the community misunderstood, overlooked, and mocked for their uncontrollable symptoms.Amanda Talty is the CEO/President of The Tourette Association of America and joins us today to tell us more about her role with the organization, working to reduce stigmas around Tourette's, ticks and picking up on possible signs of the syndrome in children.  Want better health and nutrition? Now you can get personalized supplement recommendations and custom vitamin packs delivered to your door! Go to PersonaNutrition.com/Roizen and take your free assessment and get 50% off your order today. - sponsor  BonusHow Your Diet Affects Your Risk for Cancer

Studies have estimated that 1 of every 162 children (0.6%) have Tourette's Syndrome (TS).Studies have estimated that 1 of every 162 children (0.6%) have Tourette's Syndrome (TS). A CDC study using parent reports found that 1 of every 360 (0.3%) children 6 – 17 years of age in the US have received a diagnosis of TS; this is about 138,000 children.The Tourette Association of America (TAA) is working hard to increase social acceptance and tolerance for people with Tourette Syndrome. People with Tourette Syndrome have long been misunderstood and mocked for their uncontrollable symptoms which can lead to long-term effects on their mental health. It is estimated that 1 million Americans are living with Tourette Syndrome or a Tic Disorder – and an alarming 50% are going undiagnosed. The complexities of this disorder leave the community misunderstood, overlooked, and mocked for their uncontrollable symptoms.Amanda Talty is the CEO/President of The Tourette Association of America and joins us today to tell us more about her role with the organization, working to reduce stigmas around Tourette's, ticks and picking up on possible signs of the syndrome in children.  Want better health and nutrition? Now you can get personalized supplement recommendations and custom vitamin packs delivered to your door! Go to PersonaNutrition.com/Roizen and take your free assessment and get 50% off your order today. - sponsor  BonusHow Your Diet Affects Your Risk for Cancer

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. 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

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 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

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. Episodes 0 and 1 are out simultaneously. 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 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

The fight for a cure to Parkinson’s Disease has been a decades-long battle, with several treatments evolving alongside the evolution of medicine as a practice. In this episode, host Richard Miles sits down with Dr. Michael Okun, the Chair of Neurology, and Professor and Executive Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida College of Medicine. He is an expert on deep brain stimulation, and author of over 400 peer reviewed articles as well as the book Parkinson’s Treatment: 10 Secrets to a Happier Life. Here, Dr. Okun dispels myths surrounding Parkinson’s, talks about his research and clinical work, and discusses his involvement with several non-profits raising awareness on other conditions and diseases. “Every day that I practice medicine, I know less,” says Dr. Okun. “It’s a profession where you have to have a lot of humility. You have to have an open mind and things change over time.” TRANSCRIPT: Intro (00:01): Inventors and their inventions. Welcome to Radio Cade, a podcast from the Cade Museum for Creativity and Invention in Gainesville, Florida. The museum is named after James Robert Cade, who invented Gatorade in 1965. My name is Richard Miles. We’ll introduce you to inventors and the things that motivate them, we’ll learn about their personal stories, how their inventions work and how their ideas get from the laboratory to the marketplace. Parkinson’s Disease. What do we know about it? Why does it seem to be more common and how do we treat it? Welcome to Radio Cade. I’m your host Richard Miles today. I’m pleased to welcome Dr. Michael Okun the Chair of Neurology and Professor and Executive Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida College of Medicine. Dr. Okun’s also an expert on deep brain stimulation and author of over 400 peer-reviewed articles, as well as the book “Parkinson’s Treatment: 10 Secrets to a Happier Life.” Welcome to Radio Cade, Dr. Okun. Dr. Michael Okun (01:11): My pleasure to be here, Richard. Richard Miles (01:12): So before we start, I have to mention you’re also a poet and that caught my eye mostly because I find myself in middle age becoming very interested in poetry, but only as a reader, not an actual poet. So I have to start, is this something you’ve always done or is it because being a brain doctor wasn’t challenging enough for you? What got you into poetry? Dr. Michael Okun (01:28): My original bent was in humanities, and I have a degree in history. And so, I love to write, and I love to try to express myself in different ways. I love poetry, because there’s a new precision towards, and I think that through poetry, you can express concepts using emotions and other modalities to reach your readers. And so, over the years I’ve done a number of poems, and I have an old book called “Lessons From the Bedside” and have done some writings in said time as well. Richard Miles (02:01): I love that analogy too, to the work that you do. Cause one of the things I have noticed in my very limited foray into studying poetry is precisely what you said, that the precision of the use of certain words versus not other words. And that reveals a lot of the thinking and so on. And I imagine studying medicine, there is some similarities there. Dr. Michael Okun (02:18): That’s right, and really keeping an open mind. And I am also a neurologist by training. And so I practice medicine and I say often that every day that I practice medicine, I know less. It’s a profession where you have to have a lot of humility. You have to have an open mind and things change over time. And we’re really like cabinet advisors to people. We’re here to help with the best information that we can, but we really shouldn’t be so prescriptive, and so sure of ourselves. And I think anybody, whether you’re an inventor, you’re a scientist, you’re a clinician or all of the above, will look back and say what I did five years ago, versus what I’m doing now, is different. And it might seem subtle because you lived it, but if you think in those terms, that’s, I think what I would term as wisdom and you realize that practice of medicine and the understanding of diseases evolves and that there’s not one solution for everyone. Richard Miles (03:15): That’s a great way of looking at it. And that really helps, I think, for what we’re about to talk about now, and that is you have developed, or you’re known as really one of the world’s experts on a technique to treat Parkinson’s. But before we get into the details of what that is and how it works, I’d like to talk more broadly about Parkinson’s itself, which is a disease that most people probably have heard of or know somebody with Parkinson’s, but they may not know exactly how it works and what are some of the underlying causes. And I noticed that a few years ago, you wrote a paper called “The Emerging Evidence of the Parkinson Pandemic,” which caught my eye, obviously because we’re in the midst of another pandemic. And so pandemics in general, I think are of higher interest to everyone. But in that paper, you said that neurological disorders are now the leading source of disability globally, and the fastest growing neurological disorder in the world is Parkinson’s disease. And you said that from 1990 to 2015, so about a quarter century time period, the number of people with Parkinson’s disease doubled to over 6 million. And finally your quote, “for most of human history, Parkinson has been a rare disorder, but various factors have now created” what you call Parkinson’s pandemic. There’s a lot there, but why don’t we start by briefly describing for listeners who are maybe not exactly sure how Parkinson’s differs from other types of neurological diseases. Define it for us. And then why don’t we spend some time talking about those various factors that have caused it apparently to go from a rare condition to pandemic-level proportions. Dr. Michael Okun (04:40): So first Parkinson’s Disease, it’s a neurological syndrome, and it comes with symptoms that people can readily detect. Oftentimes when you’re in a crowd, you see somebody might be shaking, they might be shuffling their feet, their handwriting might be small when they’re at the bank, and they may be struggling with some of these, what we call motor features and also what we call non-motor features. So it’s a brain disease that affect depression, anxiety, and quality of life. And it turns out that Parkinson’s Disease is not just a disease of dopamine. And so a lot of people believe that you lose dopamine in the brain and you get Parkinson’s, it’s actually degeneration of multiple circuits. I’ve spent my career studying the circuits and Parkinson and in other diseases. And when we think of Parkinson, I remember when I was at the White House in 2015, I was quoted as saying, “Parkinson is,” and I’m not the first person that said this and won’t be the last, “the most complex medical disorder period,” because there’s over 20 motor features and non-motor features. So tremor, stiffness, slowness, (and not everybody gets tremors and not everybody gets stiff necessarily, it could be different varieties) in depression, anxiety, sexual dysfunction, other issues too. And then you throw in dopamine replacement therapies, you throw in deep brain stimulation ,what you mentioned, and it’s something that we’ve been researching now for a few decades here at University of Florida with one of my partners, Kelly Foote, and Mendez and many other people in the laboratory. And so Parkinson’s Disease is a neurological disorder. It is rapidly expanding. And about eight years ago in the book, 10 Secrets to a Happier Life, in the prologue, I said: “Parkinson has all the same characteristics of a pandemic.” And that was very controversial at the time. That’s eight years ago. And our most recent book that just came out from Hatchette publishing, “Ending Parkinson’s Disease,” it was originally titled the Parkinson’s pandemic. The publisher changed the title, and they wished they could have that back because it came out in March, 2020. So, “pan” means “all” in Greek, “demos” means “people.” And when you apply the concepts of a pandemic, they can apply to other diseases. Although, I was just on a call with the World Health Organization last week, and I think it’s fair to keep the term pandemic reserved for infectious diseases. Although people should know that the rapid expansion, the geography, the people not being immune to it, it all applies to other diseases like Parkinson’s. Richard Miles (07:06): So tell us, what are some of the factors that researchers have uncovered, or maybe that you hypothesized are at work here that are causing it to grow, I’m guessing, dramatically on a per capita basis? Are there geographic differences, for instance, in range between different countries or different demographic groups? What is going on here, and what do you think is behind it? Dr. Michael Okun (07:25): So we just had a conference with our colleagues in Geneva, Switzerland at the World Health Organization that have taken this on. And there’s a working group of us from all different countries, from rich countries, from poor countries, from countries somewhere in the middle…Parkinson occurs in all of the above. Now, one of the myths of Parkinson is that it’s all due to aging. And so as you get older, you get a higher prevalence of Parkinson and that’s true. Now, many people might be surprised when I tell you in our waiting room, I see people in their teens, and twenties and thirties with Parkinson’s, and it becomes more of a common as you get older, but it doesn’t mean it can’t occur in young people, as well as people–I don’t say old people–I say more seasoned people. And it turns out that age, it’s a myth. Age is not the only thing that’s driving this increase. There is going to be a doubling of Parkinson between 1990 and 2015. That’s already happened. It’s going to double again from 2015 to 2040 and could collapse healthcare systems, cause lots of suffering if we don’t get out in front of it. And so there are other factors that are driving this. And one of the ones that we talked about in the latest book is about pesticides and chemicals and environmental factors, and how those factors and the industrialization of society and how that’s changed the game. Richard Miles (08:47): That’s fascinating. So let’s move on to, what are some of the treatments that are available? You mentioned deep brain stimulation that you and Dr. Foote and others have been working on for a couple of decades. What led you to that I guess, and tell us how it works and what sort of improvements that you see? Dr. Michael Okun (09:02): Back in the 1930s and 40s, there weren’t treatments for Parkinson’s and for other diseases of movement. Some of the early attempts were actually making holes in people’s minds and disrupting these abnormal conversations. So if we think of the brain as a group of islands and the islands are all talking to each other, if you disrupt the conversation, people discovered that this is a potential way to treat specific symptoms, depending on which circuit you disrupt that conversation. And as time evolved, we were able to modulate conversations by using medicines. And the first major medicine was introduced by George Cotzias in the 1960s, and that was dopamine replacement therapy. And that actually modulates, it changes the way the brain’s oscillations are moving, and everybody, whether you’re awake or you’re asleep, your brain is always oscillating. And when you have a disease, particularly in neurological disease, that oscillates in different ways. So surgeries came back; when we have better technology to get to very specific sub millimeter zones of the brain, we started burning out pieces of the brain and that’s what I did during my training. And then as we moved along, we began to understand how the different areas were talking to each other, and we develop what’s called neuromodulation, so sticking straws in, introducing electricity into those circuits, I’m trying to change the way that they would talk to each other. And so my mentor and one of Kelly Foote’s mentors who I work with is a man named Mahlon DeLong at Emory University. He’s retired now, but a tremendous human being, and he was the one that really spent years and years at the National Institute of Health, and then at Hopkins, and at Emory decoding what the circuits are. And in 2015, he received the Lasker Award, which is one of the highest awards in medicine, just under the Nobel, for this work. Richard Miles (10:50): Doctor, now that this is becoming more common and will become more common, walk us through what happens when, let’s say someone’s parent they’re 60, 65, 70 years old, they’re brought in to a doctor like you or a clinic somewhere, and they’re diagnosed with Parkinson’s. What are some of the first steps of treatment? And coming back to deep brain stimulation, is this a one and done type of treatment, or is this a continuous regimen of treatments over time? And then what does the outcome look like for, say, someone in their mid-fifties or early sixties? Dr. Michael Okun (11:20): So when we think about Parkinson’s Disease, the first thing we think about is when somebody comes in, we need to understand when you say those words, “you have Parkinson’s Disease,” it’s not the end of the world. Okay? There are a lot of different forms of Parkinson’s Disease. And I have folks in my practice I’ve taken care of for 20, 30, 40 years. Okay? So it’s important for us to dispel that myth. And as we dispel the myth and begin to deliver treatment, we recently wrote in the Lancer last week, a seminar on Parkinson’s Disease, 20 page-seminars, get your coffee if you want to read it. But we talk about, in that seminar, there’s a picture of when we started here at University of Florida, we had this concept of model for caring for the Parkinson person. And we said, the person’s the sun, and we should all orbit around the person and the family, because this is such a complex condition. And there are so many, you know, specialists; you need an archeologist, a neurosurgeon, neuropsychologist, PT, OT, and speech, or maybe you need a nutritionist, access to clinical trials… We have over a hundred clinical trials, it becomes confusing. And so, we need to integrate the care, and if we integrate the care into what we call a multidisciplinary team, we’ve learned that it isn’t just–I call myself the drug dealer as a neurologist. It isn’t just the drug dealer or the device dealer, where we take people to the operating room and put a device in that provides the best possible care. It’s this model of interdisciplinary care, and it continuously changes over time, and you have to actually listen to the people, so it’s a different specialty, and to actually listen to the clues that they give you on how they’re living in order to change timing and change doses. There’s over a dozen different medications, there’s all sorts of infusions, there’s deep brain stimulation. And I like to teach, and we have fellows here who, after they’re done with their neurology residency, spend two years with us to train in this, and we’ve trained about 70 of these were all over the world. And what I like to tell people is Parkinson is like a lifetime disease. Think of all these different therapies, and you need to understand how the disease evolves and when is the right window to apply each one. So deep brain stimulation isn’t for everyone at all times, but there are points in the treatment where it can provide extremely beneficial effects on things like just suppressing tremor or movements we call dyskinesia. And so knowing the disease and knowing the person, and then creating the right multidisciplinary plan is important. And the last point is, we wrote something for the Journal of the American Medical Association last year with Melissa Armstrong here at UF. And we, as experts said, a first-line therapy now is exercise. We now recognize that exercise is so beneficial for this disease, that it’s now considered a first-line therapy, right along with the medications. And so that should tell you something about the humility of treating this disease for so many years and us understanding what’s good for folks and what’s not. Richard Miles (14:18): If we compare this to a disease like cancer, is Parkinson’s something that could actually be put into remission, or is this a steadily degenerative disease? All the treatments are just slowing down or resting that trajectory, but essentially it’s going down, or can you stabilize somebody for a decade, for instance, with no decline? How does that compare to something like cancer? Dr. Michael Okun (14:37): Parkinson’s is a progressive neurodegenerative disorder. Now there are multiple what we call phenotypes. So we have what some people call benign Parkinson, because it progresses so slowly. And then there are other forms that progress faster. We’re just beginning–it’s like Genesis of the Bible–we’re just the in first couple of days in understanding actually the differences between some of these entities, but it is progressive. Now people might say, well, tell me, how did Pope John Paul get anointed as a Saint, right? Didn’t he cure a nun of Parkinson disease, and that’s how he achieved sainthood. Well, we’d like to leave that story alone because it turns out that many people who are presumed to have Parkinson’s disease do not. And so if you get better then you may not have Parkinson’s, and then there’s a group of people who have tremors and other symptoms that look like Parkinson’s. About 10%, about one in 10, very early on, when you first see them, then never progress. And a lot of times people don’t go back and realize, wait, this person’s not progressing at all — hey actually don’t have Parkinson, they have something else that’s more benign. And we realized that, and we gave this crazy name to that called scans without evidence of dopaminergic denervation. I would never call a person a sweat, that’s what it stands for. But, if you’re not progressing, you may not have Parkinson’s. And sometimes early on the diagnosis can be made in the wrong direction as well. And so it’s very important, but when you do have Parkinson right now, it’s progressive. Now we are searching for things that will slow the disease down and, or provide precision medicine or other treatments for it, but we haven’t gotten there yet. Richard Miles (16:15): So let me come back to something you just said about perhaps a faulty diagnosis. It sounds like the ideal treatment or regimen of treatment is this interdisciplinary approach, which you’ve got multiple people looking at it and working on it from different angles for a patient, but I’m guessing that that level of complexity of care is not available to everyone. Do you have to be next to, say a major research hospital, like University of Florida, or some major metropolitan area to get that kind of care? And if you’re not, and you’re in a rural area or in a very poor country, for instance, what is the outlook for somebody in their mid-sixties? Dr. Michael Okun (16:44): So in general, if you can get access to one of these multidisciplinary teams, it’s better. We know from Medicare data done by Allison Willis, who is at the University of Pennsylvania, that if you have access to even a neurologist, and most people don’t actually see a neurologist, if you have access to a neurologist, your morbidity and mortality, your nursing home placement, all of those things that are super important, those numbers get better. Just having access. If you have access to multidisciplinary care, the data is beginning to point that this is also better. There are centers of excellence that have been set up through foundations, ike I work as a medical advisor and former medical director for the Parkinson Foundation. We have 47 centers all over the globe, but these aren’t widely available to people. What we do at the University of Florida is we see people from all over the world, we always have, and we try to construct plans for them, so these plans can be carried out by people within local zip codes, whether your local zip code is in Australia or Asia, or you have flown in to be seen, you know, from there where we set the plans, and then we ask the therapists to follow them out. Beause a lot of therapists and other members of a multidisciplinary team, they may be giving you the wrong therapy. And sometimes the wrong therapy, Richard, is worse than no therapy in a disease like this. And so setting the right plans, communicating and creating public health value is important. And one of the three things, we just had a campaign it’s still ongoing called the Give a Dime for Parkinson’s Disease campaign, and our first goal was to get to 10,000 red cards to the White House. We’ve now reached 25,000. One of the three points, while we asked for three things– because if you ask for too many people get distracted–we’re asking the White House and congressional members to consider as one of the three things is to maintain telehealth access for people in the United States. That didn’t happen before COVID-19, and many people don’t realize that that’s not permanent. That has to be made permanent, and then we have to develop these types of interdisciplinary models, so that people who don’t have access or don’t live right next door can still get access and the right advice, and then put the right team together, so they can have the best outcomes. The best outcomes mean less falls, less fractures, billions of dollars in healthcare savings, happier people. And so I think it’s in everybody’s best interest, particularly as the disease has exploded. Richard Miles (19:06): And Dr. Okun, In addition to your research and your clinical work, I know you are involved in at least several nonprofits that I know of, probably more. Tell us a little bit about what you’re doing in those areas, like Tyler’s Hope and so on, and what has been the response as you’re trying to raise awareness on some of these conditions or diseases that are not as well known. Dr. Michael Okun (19:23): Yeah. So I think when you look at other diseases and what they’ve done to change the trajectory, the story of polio, the story of HIV, and in HIV, it took what we call four pillars to do that. So you have to develop a system with any of these nonprofits for any of these really important diseases that are going to affect society. P is for prevent, A is for advocate, C is for care, and T is for developing new treatments through research. We call it the PACT. So when we went and we researched, we said, what do you need to do? So we need to get all of our non-for-profits together and we need to organize and sum our voices, and reach that inflection point where we can become loud enough. We can advocate with enough force to actually push change. And that’s what happened in HIV. For example, they went from a few hundred million in funding to 3 billion, a year in funding. And now HIV, when I was an intern, my first year out of medical school, 25 years ago, this was a bad word to be on. If you have HIV, it was kind of the death word, and it was really not great. And now, it’s a chronic livable condition, the trajectory has changed for literally tens of thousands, if not more people, worldwide. And there’s a reason why that happened: prevent, advocate, care, and treat them. And advocacy was huge. And so I’m a big believer in non-for-profits and even more than opening the checkbook and writing the check, getting involved. And I’m a believer that when you sum voices together, if you can get to a certain level–and nobody knows exactly what that is, maybe we can ask them out loud while our tipping point lives through these things. But there is a moment where things tip. And so one of the things in Perkinson, for example, we’re trying to tip, one of the three things we’re asking for us increase the funding from 200 million to 2 billion a year, by 10 times, because we know that if you increase it by two times, you’re going to get twice as much research, twice as many young researchers. And so this is going to have a multiplicative effect. When it comes for Tyler’s Hope for just only a cure, here, this is a disease where we know the deletion. We know where it lives. We know quite a bit about it. We have a lot of technology, we just need to, sum our voices, push more money into this, and that’s what Tyler’s Hope is doing, push the advocacy, and we can create a precision medicine treatment. And I think we’re on our way and that disease as well, there’s still a way to go, but the same for Tourette. So I’ve been in the tourette world with a non-for-profit called the Tourette Association of America. So I think the story is the same, but I think part of the formula to reach impact is you have to bring together globally voices. And when we were speaking with World Health Organization, there were representatives from all countries talking about Parkinson and creating that grassroots movement. And we have a grassroots movement called the PD Avengers on Twitter. Now there’s 3000, like really loud, obnoxious people on one of them that are really making a lot of noise. And that’s what we need. We don’t need to be polite anymore. We need to be aggressive and charismatic and a bit obnoxious for these diseases. Richard Miles (22:26): I like how you put that and, as a comment, as an aside, I spent a good portion of my career overseas. And one thing that non-Americans are amazed by is the level for nonprofit activity that we have in the United States, directed towards all sorts of things, but in particular medicine or health, and the vibrancy of that sector really is something almost distinctly American. They obviously exist in other countries, but not nearly at the level and scope of what you see all over the place in small towns, big towns, and so on. Dr. Michael Okun (22:53): It’s a very special thing. And you’re absolutely right. I’ve done outreach to other countries. And I, I won’t say which country I was in, we actually brought some devices in and probably could have been arrested for doing that. And we were helping the doctors with some devices and some implants. And we were out seeing people all over, who just needed help. And it struck me in that experience, and I’ve seen it in other countries as well, that we helped a woman, and then they invited us to dinner, and we realized that, Oh my God, this woman that we helped is the mother of somebody huge in the country that has these huge business interests all over the country. And we said, why don’t you give a whole bunch of money to Parkinson’s disease? And they said, “give money to Parkinson disease? We don’t give money. This is an American thing.” You know, too, we’re having this discussion. “You all give away your money. We don’t do that. We don’t do charity.” And I thought, wow, it is really something special. And, and then I think they felt a little bit embarrassed. And then they said, well, we do give charity. But the charity we give is we support our sports teams. And so we explained to them, well, that’s not exactly charity. And so I do think that it is a uniquely American thing. It’s one of the things that differentiates us, makes us stronger and gives us the potential to mobilize and galvanize against diseases and other issues that face society. Richard Miles (24:12): And it’s also a perfect way to mediate between the individual who alone can’t do much, and the government, which often has a lot of resources, but is not terribly efficient in how it distributes them, so it creates this whole layer between small groups and very large governments. Dr. Okun, one final question or a couple of questions actually. At the Cade Museum, we like to not just tell a story of inventions, but the inventors, and not just the story of technology, but the researchers behind the technology. So tell us a little bit about pre-professional Michael Okun: what were you like as a kid? Did you know, early on you wanted to be a doctor or a researcher? What were some of your early influences? Dr. Michael Okun (24:48): Yeah, so I had it pretty good as a kid. I grew up with a good house. I had two parents. My father was a dentist, my mother was teacher. And so I kind of got left brain, right brain. They had very different ways of looking at the world. I was always memorizing things like the backs of baseball cards, statistics, things like that. And my life I’ve always had a joy. I’ve always been a person that’s had pure joy to be part of things. And so for me, a lot of my joy was in reading history and humanities and things like that. And so I saw myself more as a teacher and a teacher of history and even going into medicine for me, I saw myself as a black bag family practice doc. But what happened to me was life as a journey. And it’s like a lot of Chinese philosophers say, Lu Zhen is a famous Chinese philosopher who talks about roads, and there are no roads, and when there are no roads, a road is formed because people walk on that road. And so you walk your journey and you take your opportunities. And sometimes you don’t know exactly what you’re interested in or not interested in. And so even when I ended up saying, I want to go to medical school now and try to help people in underserved communities, I couldn’t tell you the difference between a neurologist and neurosurgeon you know, at that point in my life, and you just keep walking the road, and it turns out I’ve always been fascinated by people with tremors and movements and saying why. And I said, I would never do research. I’m a teacher. I would never do research. And then I realized that the government will give you a whole bunch of money to study things that you’re super passionate about that can help people. And so I was super passionate about figuring out where in the brain ticks came from. And so I’ve spent 20 years working on that problem, and we’ve developed devices, systems and things to try to address that problem, same with Parkinson and tremors and certain movements and funny walks. And so I’ve always been fascinated by that. I think the secret is, you find your passion, you spend as many minutes as you can doing your passion. And if you can get somebody to actually pay you to do it, then that’s the bonus, but the bonus doesn’t always happen. And I think in my life, all of those things have aligned and I have great joy every day that I come to work ,every day that we go to the operating room, Kelly and I, I have great joy. We’re always thinking, we’re always innovating. And we consider our labs a continuous beta test. We’re always writing papers. We’re always thinking about stuff. Now, one thing we’re not for people that are listening to this podcast, we’re not like business entrepreneurs. So we patented a whole bunch of different things: how you do a cap on this, how you do reporting on that, how a device would do this, how one side might turn this side on. And, we get involved with all of these things–vaccines–but our job is we just keep innovating, and then we hand that over to someone else and innovations square and let other people run with it, because our passion and our impact is trying to help as many people as we can. And so there are various different aspects to the creativity process, to the invention and the innovation process. And we have kind of a human laboratory, you know, in the operating room and in the clinics and in seeing people and they tell us what the problems are and we try to innovate for them. And the next steps happen as we try to create that, we try to write it down. Remember I like to write poetry and other things. We try to write it down and tell people what we did, and then the next steps will happen. So there is this beautiful process of innovation that happens, and there are a lot of people that quietly do that in the background like Kelly Foote and groups here that are just quietly doing their jobs, writing down what they’re doing, and then letting other people take it to the next level and commercialize these things and make sure that they get out there to help people. And there’s a great quote, I think it was Jonas Salk who they said, are you going to patent polio vaccine? And he said, well, that would be like patenting the sun. And so we’re all into patents and innovations and everything. But at the end of the day, we have a certain amount of minutes on the planet, and if we can come up with innovations that are going to help and impact people’s lives, I think that’s what most of the people, at least on the medical disease side of innovation, are interested in. And so you asked me what my message would be for kids or young people would just be follow your road, spend as many minutes doing the passion that you can, impact as many lives as you can. Don’t worry about the money. Don’t worry about that. Just worry about how much joy you have in your heart. That’s all you need to do. Richard Miles (29:14): That’s a great answer. And whether intentionally or not, you summarized also a good chunk of the origin story of the Cade Museum and Dr. Robert Cade, who invented as you know, Gatorade, because he didn’t have any idea how to take that product to market. He liked to write poetry. He had just a real joy in life for helping others and to his final day, he and his co-inventors, the number one thing they were proudest about, about Gatorade, was the fact that it became the cheapest and most widely available treatment for infant diarrhea in the third world. Wasn’t intended to do that, but that’s what they are really the proudest to have, not that it became a culture or a sports icon. And so it’s nice to hear you say that, but just in different words. Dr. Michael Okun (29:50): I think it’s a great story, and one I hope kids are listening to, but so many people will give you advice about your career and everything, and I think they make it more complicated than it needs to be. Richard Miles (30:01): You precluded my last question, was what would your career advice be? And you just gave it to me anyway, but it’s great advice and really appreciate having you on the show. You’re doing tremendous work, keep doing it. It’s inspiration on all sorts of different levels and wish you the best of luck. Dr. Michael Okun (30:13): It’s my pleasure, and we love the Cade Museum. We talked about being involved in non-for-profits, my wife and I are involved in, and we think it’s just a great thing for not only this community, but for the world. So thanks for all you do. Outro (30:25): Thank you. Radio Cade is produced by the Cade museum for creativity and invention located in Gainesville, Florida. Richard Miles is the podcast host and Ellie, Tom coordinates, inventor interviews, podcasts are recorded at Heartwood, soundstage and edited and mixed by Bob McPeak. The radio Cade theme song was produced and performed by Tracy Collins and features violinist Jacob Lawson.

April marks National Parkinson's Awareness Month and Dr. Joohi Jimenez-Shahed, MD, movement disorders neurologist at the Icahn School of Medicine at Mount Sinai in New York, and Jeff, who she treats for Parkinson's Disease (PD) discuss the latest technology surrounding deep brain stimulation (DBS) and how it can help improve or relieve movement symptoms of PD. They also talk about how to know if DBS is right for others with PD and the impact of the disease on those living with it. Dr. Shahed - After completing her undergraduate degree at Washington University in St. Louis, Dr. Shahed received her medical degree from Baylor College of Medicine (BCM) and Neurology residency training at Duke University Medical Center. She then completed a fellowship in Movement Disorders at the Parkinson's Disease Center and Movement Disorders Center (PDCMDC) at BCM. Her research interests lie in investigating the intraoperative neurophysiology of patients undergoing deep brain stimulation (DBS) for movement disorders and the application of wearables and digital health technologies to the care of patients with Parkinson's disease. Dr. Shahed serves as Chair of the Functional Neurosurgical Working Group of the Parkinson Study Group, Chair of the Science Advisory Board for the Davis Phinney Foundation for Parkinson's, member of the Medical Advisory Board of the Tourette Association of America and past chair of the Medical Advisory Board of the Houston Area Parkinson Society. She is the lead investigator for RAD-PD: a national quality improvement registry for patients undergoing DBS surgery for Parkinson's disease. She is also an investigator with the Huntington Study Group, Dystonia Coalition and TSA International Database of DBS Studies in Tourette syndrome. She has served as Principal Investigator for industry-sponsored and investigator-initiated clinical trials and has authored several papers and book chapters. She is the recipient of the Roy H. Cullen Quality of Life Award (Houston Area Parkinson Society), the Rising Start Clinician Award (BCM), the Fulbright & Jaworski L.L.P. Faculty Excellence Award in Teaching and Evaluation (BCM) and the Healthcare Heroes Award for Outstanding Health Care Practitioner (Houston Business Journal). She was recognized as a Woman of Excellence at BCM, and is a 2018 graduate of the inaugural Women Leading in Neurology program of the American Academy of Neurology. Jeff was diagnosed with Parkinson's Disease in July 2016 at the age of 64. He practiced dentistry in Long Island , NY for over 40 years prior to his diagnosis ,retiring shortly after. He spends his retirement golfing, caring for his young grandchildren, and working out with his friends at Rock Steady Boxing. Originally from Baltimore, MD Jeff attended Emory University in Atlanta where he met his wife Jan. #DeepBrainStimulation #DBS

Danielle Natoni is an elementary school teacher turned 7 figure earner who started her business 10.5 years ago when she was looking for a side gig. She hit the top rank at her company in only 2 years and have over 25,000 people on her team today. She built her business on a steady trajectory and truly believes that the key to her success was her consistency and discipline. In this episode, listen as she shares how anyone can be successful if they stay at it, tips on habit formation like time blocking, calendaring and habit stacking, how to help your team members who fall off, and how accountability and success partners are crucial to it all.Listen now and find out how to help your team show up consistently and put in the work to get to their goals!You can find Danielle at https://www.facebook.com/DanielleNatoni or https://www.instagram.com/daniellenatoni.Recent inspiration: People using social media to share heartwarming  stories.Cause she's passionate about: Tourette Association of America and helping to educate and raise awareness around the syndrome.Best advice she's ever received: "Be proud of who you are."

“ Love where you live.” That's the mission of Utah Realtor Jake Melton. He has moved 12 times in the last 8 years and has come to appreciate what it means to live somewhere you love. He helps his clients not only find homes they love, but makes sure they are also in love with their neighborhoods and communities. Along with being a licensed real estate agent, Jake is a public speaker, author, and mental health advocate. In 2018, Jake published Minimalize to Maximize Your Happiness: Cut the Crap, a book about the essence of minimalism and what it means to live a simplified, decluttered life. (You can purchase it here.) He has spoken to thousands on stages around the country and was a leading voice on LinkedIn in 2019. Jake initially pursued minimalism at a point in his life when he couldn't find any other options to cope with his mental health struggles. Diagnosed with anxiety, depression, and PTSD, he has also dealt with Tourette Syndrome since he was a little boy. Jake has become a proud voice and representative for the Tourette Association of America and spends as much time as he can supporting Tourette Syndrome and other mental health causes. He, his wife of 8 years, and their two beautiful children live in Salt Lake City, UT. He loves real estate, design, exploration, traveling, Diet Coke, personal development, basketball, music, bbq, and the beach. If you'd like to get in touch with Jake, either to hire him as your Realtor or to book him to speak, you can visit his website www.meltonrealtyteam.com or reach him via social media @slchomeboy

http://mothersonthefrontline.org/wp-content/uploads/2017/07/episode-3.mp3 In this episode, Emily talks about her journey raising a young son with Tourette's Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son's school, and the larger community. By educating those in their lives about Tourette's Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen. Topics include: Tourette's Syndrome, Self-Care, Family, Community, Advocating for your child at school. Resources mentioned in this podcast: Tourette Association of America  - (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support. https://tourette.org/ The book: The Fringe Hours by Jessica Turner Transcription Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette's Syndrome, living in Iowa. Tammy: Well, I was wondering if you could just start by telling us a little about yourself? Emily: Sure, my name is Emily and I'm a wife and a mom of two kids. I have a daughter who's seven and I have a son who's nine, and my nine-year-old son has Tourette's syndrome. Tourette's syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son's case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we're sort of new to all of this but he is a joy in our family and we're just really learning how to best care and best parent him. Tammy: Awesome. So, before we get started I'm just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you. Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that's just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them. Tammy: (laughs) Emily: I'm not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I'm a big Disney fan, it truly is my happy place. So, those are some of my passions and interests. Tammy: Wonderful, thank you for that. I want you to pretend that you're talking to other moms, what do you want them to know? Emily: I would say that the thing that I would want them to know is how community is so important when you're the parent of a child with Tourette's syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I'd share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What's the one thing that I do as your mom that helps you as a person living with Tourette's Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it's a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it's figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too.