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 connec...
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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 connec...
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 connec...
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.
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 shoul...
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!----------------------------Reprogramming the Brain: A Guide to the Future of the Brain and Neurom...
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 i...
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 get to know Emmanuel Dalmas from France. He tells his very inspiring story of finding success in all aspects of life, in spite of living with dystonia. It took Emmanuel 20 years to receive the right diagnosis, a problem that we hear about all too often. He shares with us what it meant to finally know what was wrong with him and how that helped him find better treatment and cope with his condition. Emmanuel has had many accomplishments in his life in spite of living with dys...
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 wra...
In this episode of the Positive Twist we meet with Professor Mark Edwards from St George's in London, and Assistant Professor Niccolo Mencacci at Northwestern University outside of Chicago (USA). Mark was the first recipient of the David Marsden Award in 2003. He tells us about what the award has meant to him and what an impact David Marsden had on the field of neurological disorders. Niccolo received the award in 2017 and he too shares about what the award has meant to him, how it has helped...
In this episode we talk to Donna Walsh from EFNA, the European Federation of Neurological Associations and Professor Emeritus Marjan Jahanshahi from UCL Queens Square Institute of Neurology in London.We discuss the state of the world for people living with neurological disorders during the Covid-19 pandemic. Donna shares about some of the work EFNA is involved in, and Marjan gives some helpful advice on how to cope with living with a neurological disorder, and dealing with isolation during th...
In today's episode we hear Alistair Newton tell his dystonia story, as well as share with us his important involvement in the dystonia community. Alistair founded Dystonia Europe as a result of being diagnosed with cervical dystonia himself. He has furthermore been involved in many great initiatives for improving the lives of people living with neurological illnesses, and made a tremendous impact in the field as a whole. Alistair has helped share information, spread awareness, and...
In this episode we sit down with Monika Benson, Executive Director of Dystonia Europe. Monika has been living with cervical Dystonia for 19 years, and after years of feeling isolated she now feels as if she has a big "Dystonia family".Around Monica's 40th birthday, she started noticing her neck pulling to the left. She thought the pain was due to a muscle strain from working a desk job at a school in Sweden. After 6 months of doctor's visits she had received the diagnosis of Dystonia. Af...
Stephen Batey from Newcastle, UK experienced his first symptoms of dystonia as a seven year old. It started in his right foot and eventually spread to his back, neck, and upper limbs. Stephen was connected with a children's neurologist who gave him the diagnosis DYT1 positive primary torsion dystonia.Stephen was started on oral medication along with regular botulinum injections. DBS surgery was presented as an option, but Stephen’s parents decided to wait and let Stephen make the decision abo...
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 connec...
