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…
How Dystonia Europe Came to Be, and What a Life’s Work in Patient Advocacy Has Brought Alistair Newton | The Positive Twist Podcast
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…
Making Dystonia Your Friend, with Monika Benson | The Positive Twist Podcast
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…
How DBS surgery transformed a life, with Stephen Batey | The Positive Twist Podcast
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…