Unstoppable Strides: Navigating Runner's Dystonia

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:BotoxColchicineRapamycinDr. Steven Frucht at NYU-LangoneSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

Julie has a conversation with EMDR specialist, Whitney Dittmar, MA, LPC, EMDR Therapist for Athletes, Performance & Trauma SpecialistListed 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 mental and physical blocks. EMDR is therapy that encourages the patient to focus on a traumatic memory while simultaneously experiencing bilateral stimulation (typically eye movements), which is associated with a reduction in the vividness and emotion associated with the memories. This therapy is an extensively researched, effective psychotherapy method proven to help recovery from trauma and PTSD symptoms. Research shows EMDR therapy as a helpful treatment for disorders such as anxiety, depression, OCD, chronic pain, addictions, and other distressing life experiences, and may even be more effective than Prozac in treatment. Learn more about Whitney Dittmar, MA LPCEMDRIA to locate a therapist in your areaSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 hope in an awe-inspiring way.Here is a link to his training site (https://spewaktraining.com) and a bit more about Mark (https://spewaktraining.com/mark)Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 many hours of client work, he believes that Neuroplastic recovery IS possible with the right partners, tools and techniques. Please listen, comment, like and share our work. Dr. Clarke's first book is They Can't Find Anything Wrong!www.Symptomatic.me for the non-profit Association for the Treatment of Neuroplastic Symptomswww.CurableHealth.com for the app Curablehttps://www.trynervana.com for the app NervanaSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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, somatic experiencing and many other things in this session. Learn more about Brain Spotting https://brainspotting.com/Get in touch with Thad Frye (https://www.performancebrainspotting.com/)Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 healing. Please like, comment and share!Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 with Dystonia is his first book and his second will be published in the next few weeks. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 never forget how you made them feel." - Maya AngelouLinks:Websites:www.lilibetsnellings.comwww.lilibetsnellingskytefoundation.comInstagram@leggingitwithlilibet Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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.thoughtfoundation.org/aboutHBOT - https://pmc.ncbi.nlm.nih.gov/articles/PMC11097100/ and https://pmc.ncbi.nlm.nih.gov/articles/PMC8465921/Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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, here. If you really want to geek out, listen to her podcast with Des Linden, Nobody Asked Us, on your favorite platform. Here is a link to the cast on YouTube.Some products we mentioned:Lever systemLightspeed LiftKetone IQKT TapeSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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, you  can participate in the community service program - Resilient Athlete Program (RAP) - which provides sports psychology sessions with members of the lab.Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 StametsPsilocybin Research in NatureDefault Mode Network Research from Stanford UniversityDMN Modulation by Psychadelics ResearchThe Neural Basis of Psychadelic ActionSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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/find-a-doctor/a-profwesleythevathasan/DBS - Deep Brain Stimulation https://www.ninds.nih.gov/health-information/disorders/deep-brain-stimulation-movement-disordersand info on the Boston Scientific site (the implant Kirsten has received)Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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.htmlRuth ChilesDr. FariasSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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/@dystonicrunnerand Instagram - https://www.instagram.com/dystonicrunner/Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 Re+active is here. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

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 "cure," but rather one other tool that MIGHT be useful for some people. If there were one way, we'd all be doing that. Different things work for different people.PRI websiteNeal Hallinan (PRItrainer) mentioned in the castSupport the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

Julie and JoJo discuss how they have managed comments, questions and reactions from other people. If you have comments or questions, we would love to hear. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

In this episode, we do a deep dive into the Farias Dystonia Recovery Program. Benefits, Drawbacks, Cost, etc. The Dystonia Recovery Program (DRP) is an online platform tailored for individuals with various forms of Dystonia, including Cervical Dystonia, Hand Dystonia, Leg Dystonia, Blepharospasm, Oromandibular Dystonia, Facial Dystonia, Spasmodic Dysphonia, and Musicians’ Focal Dystonia. Developed by Dr. Joaquin Farias, this program integrates a multifaceted approach to recovery. Note to listeners - we do not endorse, nor are affiliated with this program. We are merely aiming to educate, share and give hope to those with this affliction. Recovery is possible. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

In this episode we talk with cyclist Chris Melia about her presentation of Focal Dystonia. Chris is a former runner and now a cyclist who recognized the signs of dystonia in 2021. She relates to us how it presented and how she detected it. Since that time, she has made much progress and this episode details what she has done to move forward. Much of what Chris shares is less about the physical and more about the mental and emotional. As always thanks for listening.Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

In this episode, JoJo and Julie review all of the treatments tired for dystonia, explaining what seems to be working and what didn't work. It's a long list and NOT comprehensive by any means. Keep in mind that this is based on our own needs, tolerances and preferences - and may not work for you. In addition, some things that did not work for us may be working for you. We are all unique in our journeys through this. By all means stay hopeful that change is possible with persistence and a curious outlook. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]

In this episode, JoJo and Julie describe our intentions for this show and give background information on what is know as Runner's Dystonia, how it presents and why it is so hard to diagnose, much less understand. We briefly share our own personal stories and journeys from initial days of knowing something was "wrong" and how we are leveraging our newly discovered resilience. Our intention is to spread the word, educate and share what we understand about Runner's Dystonia. Support the showThe information shared in this podcast is not intended to diagnose. recommend nor treat medical conditions. We are not licensed medical professionals and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - [email protected] and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - [email protected]