Unstoppable Strides: Navigating Runner's Dystonia

Tim Koh, Professor of Kinesiology and Nutrition at the University of Illinois-Chicago, shares his story of dystonia and information about a possible link with a genetic mutation (THAP 1 ).  Please share these podcasts with friends, supporters, healthcare providers, your team. Without your support, we could not exist. If you'd like to contribute to our keeping these going, please consider dona...

Julie talks with Ariel Beccia, a researcher with the Harvard School of Public Health, on her dystonia story and how she got from not running 10 years ago to where she is now with running and racing and workouts.  Please Like, Comment, Share! Support the show The information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical profe...

Julie sits down with Dr. Bernard Ravina, CEO and founder of Vima Therapeutics. His company is developing a drug that looks promising in helping those with dystonia.  Vima Therapeutic website Vima Therapeutics team Site for current Phase 2 dystonia study into first oral medication. The study is named " Stride Dystonia " Survey done with the Dystonia Medical Research Foundation ( DMRF ).  ...

Neurologist Erik van Wensen shares his personal story and where we are with current understanding and research in the area of dystonia and specifically task-specific sports dystonia.  Mentioned in the recording: EMDR - Eye Movement Desensitization and Reprocessing CBT - Cognitive Behavioral Therapy Botox - Botulinum Toxin David Marsden Dystonia Medical Research  Dart-Player Jules van Dongen Pedals...

Julie has a conversation with Boulder, CO runner David Abelson. David has cervical dystonia and has been active in running for more than 30 years. In 2022, he developed dystonia and shares his 4 keys to his path of recovery.  "Don't give up" Mentioned in the podcast: Botox Colchicine Rapamycin Dr. Steven Frucht at NYU-Langone Support the show The information shared in this podcast i...

Julie has a conversation with EMDR specialist, Whitney Dittmar, MA, LPC, EMDR Therapist for Athletes, Performance & Trauma Specialist Listed in the United States Olympic and Paralympic Committee Mental Health Directory (2025) for the Mental Health Directory. Eye Movement Desensitization and Reprocessing (EMDR) can be used with athletes and performers to enhance performance, break through menta...

Julie talks with Stacey Ginesin and Dr. Iahn Cajigas about DBS . We cover a lot of territory here, including how to get the procedure approved by Insurance, when DBS becomes a viable option, success rates, risks and Stacey's experience with dystonia and DBS surgery.  Support the show The information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We...

Julie spends some time with athlete, coach and founder of Spewak Training and Racing, Mark Spewak. Mark is a fellow St. Louisan who recently had heart surgery to repair a PFO (patent foramen ovale), a hole in his heart. in 2025, Mark had two strokes and years prior had a CSF (cerebrospinal fluid) leak. Despite these health conditions, Mark has the relentless attitude of a champion and maintains ho...

Join us in a conversation with Dr. David Clarke, a retired Doctor of Internal Medicine and Gastroenterology, who found patients with normal labs and diagnostics never were able to resolve their chronic conditions.  Through a series of fortunate events, he discovered a framework to help these patients quickly overcome many chronic issues that "modern" medicine lacked to resolve. Through m...

Julie and JoJo spend some time with Thad Frye, a licensed clinical social worker and brain spotting consultant who specializes in using brain spotting in his practice. In this episode, Thad describes how brain spotting works, who it might benefit and how it might help individuals overcome performance blocks and other issues in their personal and professional lives.  We talk about the yips, emdr, s...

Julie sits down with Dr. William Deihl from Doc Hypnosis to discuss and dispel myths about hypnosis. Hypnosis can be used as a neuroplastic tool to help heal a variety of conditions from anxiety, pain, trauma and performance blocks - among many other things. What we discuss is a lot about how the mind is intrinsically connected to how the body operates. It all works together to function AND in hea...

Distinguished athlete Chris Phelan talks openly about his dystonia story and diagnosis. Chris has been affected for more than 10 years and has had multiple rounds of botox and dbs (deep brain stimulation). While Chris is not "cured" of dystonia, he has never given up hope. He's written two books about his story and would rather shake, rattle and roll than give up. My Ride and Run wi...

This episode takes a different twist as I talk with Lilibet Kyte who, at age 36, was diagnosed with Multiple Sclerosis (MS). We talk about treatments, her diagnosis, her team and a host of other things in this insightful episode. Key message - You cannot judge a book by it's cover.  "I've learned that people will forget what you said, people will forget what you did, but people will...

Casandra Oldham has had success in her running career that was never intended to be a running career! She shares her knowledge of neurodiverse brains and how thinking outside of the dystonia "box" might be helping through nutrition, functional medicine, hyperbaric oxygen therapy (HBOT) and other modalities.  Autism Knowledge Gateway https://www.autismkg.org/ TLI Foundation https://www.th...

Julie, JoJo and special guest host Karrie Hamstra-Wright chat with wife, mother, NBC Track and Field Broadcaster, author, World T&F Silver medalist and 2-Time Olympian Kara Goucher.  Kara shares her dystonia history, diagnosis, celebrations, tendencies to compartmentalize and other struggles in this real, heart-felt cast.  You can find more about Kara here and order her book, The Longest Race,...

Julie sits down with Megan Cohea, a physical therapist living on the East Coast. Megan has Runner's Dystonia and shares her journey, symptoms and recommendations in this conversation. Apologies for the audio issues at the beginning of the recording.  Here is a link to the TENS unit Megan uses. Support the show The information shared in this podcast is not intended to diagnose. recommend nor t...

JoJo and Julie sit down with Karrie Hamstra-Wright, Clinical Professor and Co-Director of the Applied Sports Psychology and Injury Research and Education (ASPIRE) Lab in the Department of Kinesiology and Nutrition at the University of Illinois Chicago. Like many of us interested in these podcasts on the topic of dystonia, Karrie also has this condition. For those interested in the lab's work,...

In this episode, JoJo and Julie talk with Runner, turned cyclist, Randy Morton about his dystonia journey through medical in-attention, gaslighting and athletic career. Randy is resilience personified. Give it a listen and we welcome your comments and feedback. Please continue to share with colleagues, friends AND your medical team! Support the show The information shared in this podcast is not in...

Default Mode Network (dmn) discussion on how to down regulate, how it might be a factor with Dystonia. What things we have tried help to down regulate the DMN. Includes references to breathwork, meditation and psilocybin.  Paul Stamets Psilocybin Research in Nature Default Mode Network Research from Stanford University DMN Modulation by Psychadelics Research The Neural Basis of Psychadelic Action...

We talk with Australian runner Kirsten Jackson on her progress with dystonia and DBS (Deep Brain Stimulation). Kirsten had the implant in February of 2025 and considers herself cured from dystonia with this device. Listen to this intriguing talk about her story. What she has tried and the amount of money she has invested in her health is astounding.  Links: Doctors - https://www.cabrini.com.au/fin...

On this episode, Julie talks with long-time dystonic runner, Roberta Reardon. We discuss modalities that are non-drug as well as how the issues first began. Roberta shares some key insights into how her recovery has progressed to the point of feeling almost "normal." One key to all of this is Belief.  Links:  https://www.alpenboxx.com/adventures.html Ruth Chiles Dr. Farias Support the sh...

In this episode, we talk with Shannon Webb, a newly diagnosed runner with dystonia. She shares what she has tried, where she is in her progress and what she hopes to have happen in the future.  Here is a link to the University of Illinois - Chicago's ASPIRE  Resilient Athlete Program. Thanks for listening.  Support the show The information shared in this podcast is not intended to diagnose. r...

Julie and JoJo are joined by Victoria Upson in this episode to hear her journey with running and Runner's Dystonia. Victoria shares a lot about her symptoms and how her persistence have allowed her to move forward in positive ways.  You can find Victoria on YouTube - https://www.youtube.com/@dystonicrunner and Instagram - https://www.instagram.com/dystonicrunner/ Support the show The informat...

Julie and Joelle sit down with Bree Williamson to learn about her experience with Re+active PT. This is to share information and not to recommend any particular programs. If you are interested, the website for R e+active is here.  Support the show The information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals an...

Ih this episode, Julie and JoJo chat with fellow Dystonic runner Maria Winters. Maria has successfully used the principles from the Postural Restoration Institute (PRI) to enhance her healing progress. She shares how symptoms first exhibited, what she had tried and how she is doing now after several years' worth of this type of therapy. Just to note, that we are not promoting PRI as a "c...