The Muscular Dystrophy UK: Muscles Matter Podcast

Episode 16 – Accessing vital home equipment for people living with a muscle wasting condition

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 Photiou, Muscular Dystrophy Head of Helpline and Support, who shares about the experiences of people she’s commonly come across on our helpline, her expertise on accessing equipment, and all about our new Home Equipment Grant scheme available to people living with a muscle wasting condition.

Episode 15 - A mother’s story of joy and grief around her son who lived with Duchenne muscular dystrophy

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 motivation for setting up a grief podcast and how this has helped.   Our podcast host is Muscular Dystrophy UK Head of Regional Support and Outreach Jackie Munroe.

Episode 14 – Parenting with a muscle wasting condition

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.

Episode 13 – Healthcare challenges and barriers for women 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 [https://www.musculardystrophyuk.org/news/womens-health-in-focus/]

Episode 12 - Barriers to attending concerts, sporting and theatre events

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.