The Muscular Dystrophy UK: Muscles Matter Podcast

In this Muscles Matter episode, we explore the joys and challenges that come with parenting while living with a muscle wasting condition. Along with the adaptations and support that our guests have found has helped them the most in doing this.Joining the podcast are Tahira, mum to two sons under five, and Joe, father to a teenager daughter – both guests live with a muscle wasting condition.The podcast is hosted by Kerry Spinks, Muscular Dystrophy Trust Fundraising Manager, and mum to twin sons living with a muscle wasting condition.

Our latest Muscles Matter podcast looks at the healthcare challenges and barriers that women living with a muscle wasting condition face, including misconceptions and insufficient understanding and knowledge. We look at how this affects both the mental and physical wellbeing of women, and what could be different. Taking part in this discussion, drawing on their own professional and personal experiences, are Mia Myers, who is undertaking a PhD in accessibility and women’s healthcare, and Louise Halling, a counsellor and psychotherapist, who has run therapeutic support groups for women. Both Amy and Louise live with a muscle wasting condition. Our host for this episode is Muscular Dystrophy UK Trustee Chloe Docker, who also lives with a muscle wasting condition.  Additional information (including information about the guest) Women’s Health in Focus: new event spotlights issues and challenges - Muscular Dystrophy UK 

In our latest podcast episode our guests Charley and Jack, along with our host Martin, discuss the challenges faced by people living with a muscle wasting condition when attending concerts/sports/theatre and other such events. Challenges that can often start at the point of buying a ticket and then on to physically accessing venues. They also share their own positive experiences along with things that have changed for the better in recent years, and what could be really make a difference going forwards. 

In our latest Muscles Matter podcast, we look at the impact winter has on the lives of people living with a muscle wasting condition. The challenges faced, ways to navigate through these challenges with things like hobbies and connections, along with advice for those, in particular, who find winter tough. We’re joined by two great guests Morvenna and Aaron, who both live with a muscle wasting condition, and share their own experiences. The podcast is hosted by Martin Hywood, Muscular Dystrophy UK Partnerships and Ambassador Engagement Manager, who also lives with a muscle wasting condition. 

In this Muscles Matter podcast, we discuss exciting developments in research and treatments for people living with muscle wasting conditions, what needs to be done to move these developments forwards and how these developments might affect treatments for people living with a condition more widely. Along with what surprising ideas could change the area of research and treatments in the future. We’re excited to have worked in collaboration with the MAGIC consortium project, in which we’re a partner, on this episode. MAGIC work to accelerate the development of gene therapies and genetic editing strategies that could make a real difference to people living with muscular dystrophies. Professor Francesco Saverio Tedesco, Clinical Professor of Neuromuscular Biology and Regenerative Medicine and an Honorary Consultant in Paediatric Neurology at University College London, who is also the lead researcher for the MAGIC project, joins our discussion with Muscular Dystrophy UK inhouse research communications expert Dr Charlotte Roy. Our podcast is hosted by Muscular Dystrophy UK Stories Officer Rebecca Torricelli who lives with SMA type 1.  If you have any questions, or would like to know more about our research work please contact us on [email protected]   

In this episode of our Muscles Matter podcast, we discuss people’s experiences of helpline support and the other services this might lead to —what people have found the most useful, how it has helped them navigate difficult times, and what types of support more generally are available for people living with a muscle wasting condition and for their wider support network. We’re joined by two great guests, Bernard and Zoe, who both live with a muscle wasting condition. The podcast is hosted by Muscular Dystrophy UK Head of Regional Support, Outreach, and Information, Jackie Munroe, who works closely with our helpline team and regional support services.  We believe no one should face their journey alone. 

In this Muscles Matter podcast episode, we look at what it’s like to have several members of the same family living with a muscle wasting condition. How this affects the different relationships, different levels of progression, and the support shared with one another.Sisters Cadi and Cerys, living with limb girdle muscular dystrophy, and mum Leanne, living with FSHD as does both her daughters, share their experiences of the above topic with our host Rebecca Torricelli, Muscular Dystrophy UK’s Stories Officer.

Our latest episode of Muscles Matter focuses on the point of receiving a diagnosis for a muscle wasting condition and the support made available from that point onwards. Our guests Charlotte Hardwick and Stewart Ross, both living with a muscle wasting condition, share their experiences and engage in a lively discussion with Kerry Spink our podcast host whose twin sons live with FSHD.  Drawing on their own lived experiences, all three discuss how diagnosis and support currently looks, what an ideal diagnosis and support scenario might be, and the support they’ve found most useful. 

In our latest episode of Muscles Matter we have two guests, Carmela Chillery-Watson MBE and Chris Stennett, who have both been inspired to do some incredible activities to raise awareness about muscle wasting conditions. They share their highlights, what’s up next for them, where their inspiration comes from, and tips for anyone wanting to start up a fundraising/awareness activity – however big or small.  They are joined by host Martin Hywood, who himself has lots of experience running fundraising events and activities. 

In this episode of Muscles Matter we discuss all things accessible travel when holidaying. Joining us are David, who lives with miyoshi myopathy and is on a mission to visit every country in the world, and Ross, who has SMA and is a regular long haul flight goer. They discuss the challenges they face when holidaying, offer tips and advice on flying with a wheelchair, getting around foreign countries, and what they look for in accessible accommodation, as well as what they enjoy most about travelling. They are joined by our host Becca, who lives with SMA.

In our latest Muscles Matter episode we explore the emotional impact of care, how it affects relationships, setting healthy boundaries, and when it might be time to bring in paid carers.Kerry, mum to twins Oscar and Seb who both live with FSHD, and Lauren who lives with SMA, share their experiences of care from both sides: being a carer and being cared for. They are joined by our host Becca, who lives with SMA.

Our latest Muscles Matter podcast episode focuses on mental wellbeing. Becca, Muscular Dystrophy UK Stories Officer, chats with Louise Halling, a counsellor and psychotherapist, and Joe Logue, a writer and travel disability expert – who all live with a muscle wasting condition. They share an honest and open discussion in which they talk about the mental health challenges each have faced, and tips on how they’ve worked through these. Louise also brings in her wider experience of running therapy groups for people living with a muscle wasting condition, and Joe on how having a creative outlet has helped him manage his emotions.The mental health impact of living with a condition is often an afterthought in advice on how to manage a disability, but this episode brings it to the forefront.This episode discusses sensitive subject matter, including [suicide & mental health issues] 

In our second Muscles Matter podcast episode, we discuss all things employment. Jack, who runs our Employability Helpline, hosts this month's chat with guests, Konstantina and Diya. They share their own challenges of employment with a muscle wasting condition, adaptions in the workplace that make their jobs easier, and tips they have for others wanting to get into employment.

In this first episode, host Martin Hywood and guests Chloe Docker and Jed Thirkettle, all of whom live with a muscle wasting condition, have a lively discussion about the challenges of daily life living with a condition. Themes include travel and accessibility, the uncertainty of a changing condition, and relationships.