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.

[email protected]

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/

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!

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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

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! ❤

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.

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

In this episode of the Positive Twist Podcast we meet Jukka a successful career man and runner who was diagnosed with dystonia in the middle of life. He tells his story of what he went through, how he found the right treatment and his road back to his passion - running! Jukka also shares about his dedicated involvement in the dystonia community and what that has meant for his own healing.

In this episode we meet with Gill and John Ainsley who tell the story of how Gill was diagnosed with dystonia in her forties. They were in the middle of life, rearing children and excelling in their careers. The diagnosis came with a lot of difficulty, but the couple found strength in each other and largely credit their relationship for where they are today. Listen to this inspiring story about strong love and dystonia.

In this episode we meet with Johanna Blom a physiotherapist who has specialized in helping patients with dystonia. She tells us about how she works with a team of medical professionals to ensure that her patients get the best treatment possible, and she emphasizes on the importance of a collaborative approach when administering injections, medications and physiotherapy. Johanna also tells us about her work in educating other, fellow physiotherapists, and her book that came out in 2018. To wrap things up, Johanna announces a new project coming up and gives some words of encouragement to our community. Don’t miss out on this great episode!