Unstoppable Strides: Navigating Runner's Dystonia

Julie Bergfeld
  • 5.0 (2)
  • MEDICINE
  • UPDATED MONTHLY

Join Julie and JoJo for information, exploration, stories of hope and real talk related to running with dystonia. Runner’s dystonia is a type of repetitive exercise dystonia that is brought on by running. Some are affected by walking and cycling as well.  Dystonias are a class of movement disorders marked by involuntary muscle contractions in one or more parts of the body, depending on the type of dystonia. Runner’s dystonia is considered task-specific, which means that it only occurs when doing a repetitive motion—in this case, the repetitive nature of the running gait cycle.Give us a listen if you'd like to learn more. One small favor... if you like these podcasts and want to support the show, could you buy us a cup of coffee through a donation to support our hosting and producing fees? You can email us here if you're interested in collaborating or contributing - runnersdystonia@gmail.com

  1. 2D AGO

    Chris Phelan shares his long history with dystonia, botox and dbs

    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 show The 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 - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    46 min

  2. DEC 10

    Lilibet Kyte shares her MS story

    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 Angelou Links: Websites: www.lilibetsnellings.com www.lilibetsnellingskytefoundation.com Instagram @leggingitwithlilibet  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 and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    39 min

  3. NOV 18

    Casandra Oldham on moving forward

    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/about HBOT - https://pmc.ncbi.nlm.nih.gov/articles/PMC11097100/ and https://pmc.ncbi.nlm.nih.gov/articles/PMC8465921/ 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 and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    40 min

  4. OCT 23

    Kara Goucher shares her Dystonia Story

    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 system Lightspeed Lift Ketone IQ KT Tape 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 and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    47 min

  5. SEP 27

    Megan Cohea Physical Therapist Tells Her Dystonia Story

    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 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 - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    31 min

  6. AUG 13

    Lessons in Hope, Healing and Health with Karrie Hamstra-Wright

    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 show The 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 - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    43 min

  7. JUL 29

    Randy Morton - A Vision of Hope

    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 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 - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    51 min

  8. JUN 11

    The Default Mode Network - Psychadelics and Breathwork

    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 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 and do not take the place of your team of medical professionals. You can find us here: Julie Bergfeld - julie@juliebergfeld.com and juliebergfeld.com (@juliebergfeldcoaching) and JoJo Fraser - joellef510@gmail.com

    44 min
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About

Join Julie and JoJo for information, exploration, stories of hope and real talk related to running with dystonia. Runner’s dystonia is a type of repetitive exercise dystonia that is brought on by running. Some are affected by walking and cycling as well.  Dystonias are a class of movement disorders marked by involuntary muscle contractions in one or more parts of the body, depending on the type of dystonia. Runner’s dystonia is considered task-specific, which means that it only occurs when doing a repetitive motion—in this case, the repetitive nature of the running gait cycle.Give us a listen if you'd like to learn more. One small favor... if you like these podcasts and want to support the show, could you buy us a cup of coffee through a donation to support our hosting and producing fees? You can email us here if you're interested in collaborating or contributing - runnersdystonia@gmail.com

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