About The Positive Twist - a podcast about dystonia
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!
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 connec...
23 Jan 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.
21 Nov 2024
Dr. Michael Zech on Dystonia Research and Receiving the David Marsden Award 2023
Dr. Michel Zech, a dystonia researcher from the Institute of Human Genetics, shares insights on his David Marsden Award-winning research and the challenges of funding dystonia studies.
17 Oct 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/
19 Sept 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 Neurom...
29 Jan 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 i...
8 Nov 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.
25 Sept 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
28 Aug 2023
The Road Back to Running - A Dystonia Patient Journey With Jukka Sillanpää
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.
31 Jul 2023
A Dystonia Love Story - What Good Relationships Mean For Coping Well, With Gill and John Ainsley
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.
24 Mar 2021
Finding Success in Career, Love and Life, in Spite of Living With Cervical Dystonia, Featuring Emmanuel Dalmas
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...
24 Feb 2021
The Importance of Physiotherapy and a Collaborative Approach to Treatment of Dystonia, With Physiotherapist Johanna Blom
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...
27 Jan 2021
Ten Years of The David Marsden Award, an Interview With Recipients Prof. Mark Edwards and Asst. Prof. Niccolo Mencacci
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...
22 Dec 2020
Living With a Neurological Disorder During The Covid-19 Pandemic, A Talk With Donna Walsh and Marjan Jahanshahi
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...
25 Nov 2020
How Dystonia Europe Came to Be, and What a Life's Work in Patient Advocacy Has Brought Alistair Newton
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...
29 Oct 2020
Making Dystonia Your Friend, with Monika Benson
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...
23 Sept 2020
How DBS surgery transformed a life, with Stephen Batey
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...
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
2 ratings
Spotify
5.0 / 5
1 ratings
Podcast Authority Score: 21 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
30
Social presence
0
YouTube
0
Engagement
32
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