The Positive Twist - a podcast about dystonia

Dystonia Europe
  • 5.0 (2)
  • MEDICINE
  • UPDATED MONTHLY

The Positive Twist is a podcast about the third most common movement disorder, dystonia. In every episode we meet patients, caregivers and experts, sharing facts, and their stories related to dystonia, each ending with a positive twist!

  1. The Pros and Cons of DBS Surgery, with DBS Patient Amybel Taylor

    02/20/2025

    The Pros and Cons of DBS Surgery, with DBS Patient Amybel Taylor

    In this episode, we sit down with DBS patient Amybel Taylor as she shares her journey of being diagnosed with dystonia at a very young age. After years of living with the condition, Amybel, with the support of her parents, made the life-changing decision to undergo DBS surgery. Now in her early 30s, she has recently undergone another procedure to update and replace her wires and device. In this candid conversation, Amybel opens up about the pros and cons of DBS surgery for dystonia. To connect with Amybel, you can email her at amybeltaylor@mac.com.

    1h 16m
  2. Mikko Juutinen on Pivoting Your Career and Hobbies With Dystonia

    01/23/2025

    Mikko Juutinen on Pivoting Your Career and Hobbies With Dystonia

    In this episode we meet Dr Mikko Juutinen, a former practicing dentist who has been diagnosed with dystonia in his hands, legs, calves and back. His diagnosis has led to pivoting in his career as well as in some of his hobbies. Listen to this inspiring story of overcoming the obstacles that a dystonia diagnosis can bring.

    26 min

  3. 11/21/2024

    Dr. Michael Zech on Dystonia Research and Receiving the David Marsden Award 2023

    In this episode we meet Dr Michel Zech from the Institute of Human Genetics, Technical University of Munich and the Institute of Neurogenomics, Helmholtz Zentrum München, in Munich, Germany. Dr Zech received the David Marsden Award 2023 for his paper: Biallelic AOPEP Loss-of-Function Variants Cause Progressive Dystonia with Prominent Limb Involvement. In this interview Michael shares about his research as well as his experience seeking funding for dystonia research and why more researchers should apply to the David Marsden Award. Michael.Zech@mri.tum.de

    29 min
  4. Jenny Sixt Shares All About Alexander Technique - A Fascinating Alternative Therapy for Dystonia

    10/17/2024

    Jenny Sixt Shares All About Alexander Technique - A Fascinating Alternative Therapy for Dystonia

    In this episode of The Positive Twist Podcast Jenny Sixt joins us to share about a fascinating therapy called Alexander Technique. "The Alexander Technique is a skill for self-development teaching you to change long-standing habits that cause unnecessary tension in everything you do" (alexandertechnique.co.uk). The therapy is used by musicians and has been known to help people with Dystonia.  For more information about Alex Technique please visit https://alexandertechnique.co.uk/

    25 min
  5. DBS Treatment and The Importance of Team Effort with Prof. Alfonso Fasano

    09/19/2024

    DBS Treatment and The Importance of Team Effort with Prof. Alfonso Fasano

    In this episode of The Positive Twist Podcast we have an informative and fascinating conversation about dystonia and DBS with Professor Alfonso Fasano from the University of Toronto. We walk through everything from finding help initially, to diagnosis, treatment, the DBS option and the importance of a multidisciplinary approach - it's a team effort! This is a great episode for anyone with dystonia! ---------------------------- Reprogramming the Brain: A Guide to the Future of the Brain and Neuromodulation by a Patient and his Doctor 2023rd Edition by Benjamin Stecher (Author), Alfonso Fasano (Author) Amazon USA: https://a.co/d/4WxUAgO Amazon UK: https://amzn.eu/d/ixNHyhT

    1h 2m
  6. Beyond the Diagnosis: Living Day-to-Day with Dystonia, Featuring Adam Kalinowski

    01/29/2024

    Beyond the Diagnosis: Living Day-to-Day with Dystonia, Featuring Adam Kalinowski

    This episode is in remembrance of Adam Kalinowski, who passed away just over a year ago. Dystonia Europe honors his profound impact and enduring legacy serving as our President and serving the Dystonia community.  Adam was a passionate advocate for those affected by this rare disease. His untimely departure has left a void that is deeply felt by us all. As we mark one year since his passing, Adam's spirit continues to resonate in numerous initiatives. His contributions are vividly alive in our  videos, and the patient journey narratives. Adam's artistic talent also shines through in all the graphic designs he skillfully crafted. And this podcast episode that was recorded 6 months before his passing we feel really captures Adam's essence, energy and legacy.  Adam's dedication to the dystonia community has left an indelible mark that will be remembered and appreciated for years to come. We are immensely thankful for everything he did to advance the cause of dystonia. In loving memory of Adam, we extend our heartfelt gratitude for all that you shared with us! ❤

    56 min
  7. Finding Answers in the Patient Community With Merete Avery

    11/08/2023

    Finding Answers in the Patient Community With Merete Avery

    In this episode Merete Avery, a board member from Dystonia Europe shares her dystonia story from first symptoms to diagnosis and finding the right treatment thanks to getting involved in the local patient advocacy group in Norway. Merete also shares a positive twist with us at the end of the episode regarding how her diagnosis also ended up helping her father understand symptoms he had been living with for decades.

    28 min

  8. 09/25/2023

    Jan's Journey With DBS, Featuring DBS Nurse Russell

    In this episode we meet dystonia patient Jan Farnworth and DBS nurse Russell Mills. Jan shares her story of living with dystonia and Russell about serving dystonia patients in supporting their journey with DBS. LINKS: Dystonia Europe: https://dystonia-europe.org/about-us/dystonia-organisations-worldwide/ DBS Nurse Association: https://www.dbsnurseassociation.org/team

    38 min
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Ratings & Reviews

5
out of 5
2 Ratings

About

The Positive Twist is a podcast about the third most common movement disorder, dystonia. In every episode we meet patients, caregivers and experts, sharing facts, and their stories related to dystonia, each ending with a positive twist!

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