Episode 1 - Top daily challenges of living with a muscle wasting condition

Our latest Muscles Matter podcast episode focuses on the experience of having a child living with a muscle wasting condition who might require the use of a ventilator. Guest Kasey, mother of two-year-old Chester, who lives with SMA type 1, shares her own experiences along with our host Becca, who also lives with SMA, and uses a ventilator at night. They discuss the day-to-day practicalities, dealing with anxieties and preconceptions, and share tips and advice.

Our latest Muscles Matter podcast episode focuses on dating and relationships with a muscle wasting condition. From those first early days of meeting someone and dating to the altering dynamics that can occur in a relationship over time while living with a progressive condition. We also talk about preconceptions and stigmas around muscle wasting conditions and relationships, as well as top tips on navigating dating. We are joined in this discussion by Hugh O’Keeffe, a disability, access and i...

Our latest Muscles Matter podcast focuses on the important topic of nutrition and living with a muscle wasting condition. The challenges people affected by a muscle wasting condition might face, from getting the right nutrition, maintaining a balanced diet and a healthy weight, and how your body might need different things at different times in your condition journey. We’re joined by Angela Reddy, a senior specialist dietitian with the Lane Fox Respiratory Service at Guys in Saint Thoma...

In our latest Muscles Matter podcast, we discuss the important subject of accessing vital home equipment for people living with a muscle wasting condition. The types of equipment many people require to live in their own home, how this equipment can be accessed and barriers to access, along with details about our new Home Equipment Grant scheme. Our podcast guests in this discussion are Charlotte Hardwick who lives with a muscle wasting condition and shares her own experiences, and Kyri...

In our latest Muscles Matter podcast, we dive into a personal story to look at a mother and son relationship, a son who lived with Duchenne muscular dystrophy, their life together, and dealing with grief and loss. Alex is the mother and our guest, and she shares the story of the special times she had with her son Declan, the everyday joy they found in each other’s company, and the magical mystery road trips they took together. Along with how she processed the loss of Declan, her motiva...