The Positive Twist - a podcast about dystonia

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 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 dystonia. He is a successful entrepreneur, musician, and probably most importantly, a family man. Several times throughout our interview, Emmanuel mentions how important the patience, love and support, by friends and family have been though this journey. Enjoy this truly inspiring interview with Emmanuel Dalmas and make sure to check out his music linked below! DALMAS Emmanuel on YouTube: https://www.youtube.com/channel/UCScp8WHDJOiTu7Qru1LHcBA Spasmodic Torticollis (English): https://youtu.be/vmvltorLnkk Ma Dystonie (French): https://youtu.be/LIhTkI6RFTg

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!

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 connect him further in the field. Finally both give some helpful advice and encouragement to any young researcher considering applying for the award.

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 the holidays, as well as the hardships that have come as a result of the Covid-19 pandemic.

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 promote research on a massive scale, greatly contributing to where we are today. His work was recently recognized in 2018, when he was appointed 'Member of the Most Excellent Order of the British Empire' by Queen Elisabeth II, for services to People with Neurological Illnesses particularly Dystonia. Listen to the episode and hear Alistair's fascinating story of a life's work with dystonia.

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. After trial and error, Monika found that combination treatment of botulinum toxin injections and physiotherapy exercises worked best for her. However, Monika mentions there is a lack of physiotherapists that are knowledgable of Dystonia and the best ways to treat patients. Therefore, Monika is working hard to erase the stigma, promote research, and raise awareness for Dystonia through her work in Dystonia Europe. How to Support Dystonia Europe: following Dystonia Europe on social media, sharing posts with your network, becoming a member of your national dystonia association, and meeting up with other patients to listen to their story and offering support. Monika's story is inspirational as she has turned what was one of the most difficult hurdles in her life into a blessing. Listen to the full episode with Monika on The Positive Twist!

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 about having the procedure once he turned 18. There was no hesitation on Stephen’s end, as soon as he was of age to make his decision, he opted for the DBS treatment. Stephen’s dystonia had progressively gotten worse and before his surgery it had gotten so bad that he was in a wheelchair. The DBS surgery was performed on Stephen at 23 years old and he describes his quality of life changing drastically. During recovery he picked up photography, and that has developed into a business. Listen to the episode to hear Stephen’s story of living with dystonia and having the DBS surgery. He is a true inspiration when it comes to seeing life from the bright side. You can get in contact with Stephen and view his photography through Facebook or Instagram: https://www.facebook.com/Stephen-Batey-Photography-352640098192950/ Instagram: @stephen_bateyphotography