NOTES ON NEUROMUSCULAR

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.

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. 

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. Support and further information can be found at https://www.musculardystrophyuk.org/support/

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. Check out his music on Spotify. Muscular Dystrophy Blues.

Here Sarah Gregson, paediatric neuromuscular physiotherapist, is in conversation with Zoe Harrison. Zoe works at Alderhey Hospital, Liverpool and was once a patient of Sarah's. Here they discuss Zoe's personal experience of transition, living with LGMD and what helped when she was moving between services and how it could be improved to help others in the future.Zoe has her own podcast series, Dystrophy Diaries. Check it out!

Anna Mayhew in discussion with Professor Volker StraubHarold Macmillan Professor of Medicine & Director, The John Walton Muscular Dystrophy Research Centre. Deputy Dean, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University and Newcastle Hospitals NHS Foundation Trust, International Centre for Life, Central Parkway, Newcastle upon Tyne, NE1 3BZ, UKThey discuss how LGMD presents, how it progresses, important aspects around care and the future and hope for treatments.

Anna Mayhew in conversation with Lindsey Pallant, Clinical Specialist PhysiotherapistRegional Paediatric Neuromuscular Team, Leeds Teaching Hospitals NHS Trust.They talk about the reasons for and what is important in rehabilitation after a long bone fracture.

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: MyawareFor therapists: Opentact

Anna Mayhew chats to Annette Costello about living with LGMD 2B. Annette lives in Dublin and is part of a natural history study for this type of LGMD - Dysferlinopathy.  She discusses the benefits of being part of such a study as well as what is important about managing her condition.Anna Mayhew is a Consultant Physiotherapist at the John Walton Muscular Dystrophy Research Centre in Newcastle.

Anna Mayhew  is in Conversation with Emily Reuben, co-founder and CEO of Duchenne UK and mum to her son Eli who has duchenne muscular dystrophy and Jarod Wong a paediatric endocrinologist with an interest in bone health from the University of Glasgow.The app mentioned in the podcast can be found on app stores under Duchenne UK  "in case of emergency app"For more information go to: launch in case of emergency /

Gita Ramdharry in conversation with Anna Mayhew.Gita is a Consultant Allied Health Professional in Neuromuscular Diseases at Queens Square, London. She is a physiotherapist. She is also an honorary Associate Professor at UCL Institute of Neurology.In Part 2 Gita talks in more detail about the best assessments to use in this population as well as management ideas and techniques including occupational therapy, orthotics and fatigue management.

Gita Ramdharry in conversation with Anna Mayhew.Gita is a Consultant Allied Health Professional in Neuromuscular Diseases at Queens Square, London. She is a physiotherapist. She is also an honorary Associate Professor at UCL Institute of Neurology.In Part 1 Gita explains what are Inherited Neuropathies, how they present and what is the role of therapy in the management of this group of disorders.

Anna Mayhew - Consultant Research Physiotherapist from John Walton Muscular Dystrophy Research Centre in Newcastle task to Marina Di Marco,  Principal Neuromuscular Physiotherapist from Glasgow about Jaw Tightness in Neuromuscular Disorders (Trismus) and how to manage it.The associated leaflet for it can be downloaded from Scottish Muscle Network