Moving & Not Moving
Anna is in conversation with Louise Halling, a trained counsellor. Louise has an undiagnosed limb girdle type muscular dystrophy, a diagnosis she has lived with for over 20 years. We discuss the ongoing grief associated with losing skills when you have a progressive neuromuscular disorder, ideas for adjusting and coping with ongoing losses and how professionals can support people better if they understand the lived experience.
Exercise & Activity: Lived example: Facioscapulohumeral muscular dystrophy (FSHD)
Anna interviews Mel alongside her specialist physiotherapist, Jo Reffin from Kings College, London. Mel has facioscapulohumeral muscular dystrophy (FSHD) and was diagnosed 10 years ago. here she gives valuable insights into keeping active and motivated whilst living with a progressive disorder.
Physical activity & exercise when living with a neuromuscular condition
Jo Reffin, Clinical Lead Neuromuscular Physiotherapist from King’s College Hospital NHS Foundation Trust is in conversation with Deri who describes his experience , the ups and downs of exercise and activity whilst living with a diagnosis of Inclusion body myositis (IBM) over time.
Becker Muscular Dystrophy – Life Goes On
Dave Hick is a talented musician who was diagnosed with Becker Muscular Dystrophy in
2023. Here he is talking to Anna Mayhew, physiotherapist, about receiving a diagnosis, getting his head around it and positive things that have happened in the meantime.
Congenital Myasthenia Syndrome with Hayley Ramjattan, Physiotherapist
Anna Mayhew in conversation with Hayley Ramjattan who is a Clinical Specialist Neuromuscular Physiotherapist at Oxford University Hospitals NHS Foundation Trust.
They discuss briefly how CMS presents, the role of specialist CMS clinics in the UK. The role of community teams and resources available for families and for therapists in assessing managing CMS.
For families: Myaware
Managing Jaw Tightness in NMD
Anna Mayhew – Consultant Research Physiotherapist from John Walton Muscular Dystrophy Research Centre in Newcastle, talks to Marina Di Marco, Principal Neuromuscular Physiotherapist from Glasgow about Jaw Tightness in Neuromuscular Disorders (Trismus) and how to manage it.
