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Living With SMA

Living With SMA

Hosted by Spinal Muscular Atrophy UK (SMA UK)

BusinessInterviews guests

Episodes

55

Latest episode

Dec 2025

Language

EN-GB

About the show

The charity SMA UK invites different hosts from across the SMA Community together to discuss different topics. This is great place to find useful tips, recommendations, and hear personal stories.

Listen to episodes

55 recent
December 27, 202552 min

EP:45 Talking Men’s Wellbeing While Living With SMA

In the latest episode of the Living With SMA podcast, hosts Stephen, Louis, and Ben delve into the often-overlooked topic of men's wellbeing, particularly in the context of living with spinal muscular atrophy (SMA). With personal stories and practical coping strategies, they highlight the importance of mental health and the unique challenges faced by men in society today.Main Content:Understanding the Challenge of Mental WellbeingThe episode begins with a warm welcome to listeners and a brief introduction to the podcast's mission of making SMA discussions accessible to everyone. Host Stephen Jones, who lives with SMA type three, shares a personal struggle with sleep as he reflects on how anxiety about upcoming responsibilities affects his rest. He notes, "As I got older, my sleep has been getting a bit worse... I started to sort of worry a little bit about actually, will I be able to... do the drive and get there?" This sentiment resonates with many listeners, highlighting the connection between physical health and mental wellbeing.Sharing Personal ExperiencesLouis, who has SMA type two, echoes Stephen's concerns about sleep, stating, "I struggle to get to sleep because my mind is always going at a million miles an hour." He describes how small anxieties, such as planning for meetings and bathroom breaks, can disrupt his sleep more than significant events. Similarly, Ben shares his experiences with anxiety, emphasizing the cumulative stress of daily life and the need for effective coping mechanisms.Coping Strategies for Mental HealthThe discussion naturally shifts to coping strategies that have helped the hosts manage their mental health. Ben mentions a grounding technique that focuses on engaging his senses to bring him back to the present moment, saying, "If I do find myself sort of spiraling into my own head... I sort of just have to focus on my senses." Louis introduces the use of white noise to create a calming environment, and he also mentions the impact of prescribed marijuana oil on improving his sleep. This open dialogue about coping strategies serves as a valuable resource for listeners seeking practical advice.Addressing Societal Pressures on MenAs the conversation progresses, the hosts reflect on societal expectations placed on men, particularly regarding emotional expression and mental health. Louis shares his journey of overcoming the pressure to conform to traditional masculinity, stating, "I could never really fit that mold... it is hard when you think about society will say, you know, men have to be strong." Ben adds that acknowledging the need for help is vital, emphasizing that seeking support does not equate to weakness. This discussion challenges stereotypes and encourages listeners to redefine what it means to be a man in today's world.Conclusion: Key TakeawaysThe Living With SMA podcast offers a refreshing perspective on men's wellbeing, particularly for those living with SMA. The hosts' candid discussions about sleep struggles, anxiety, and societal pressures encourage listeners to prioritize their mental health and seek help when needed. Key takeaways include the importance of sharing personal experiences, exploring coping strategies, and challenging traditional notions of masculinity. By fostering an open dialogue, the podcast aims to create a supportive community for individuals navigating similar challenges.

April 28, 202537 min

EP 44: Resonate 2004 - Adventure Without Limits

Resonate 2004: Adventure Without Limits – A Look Back at 2024 Join us as we rewind to one of the most inspiring moments of Resonate 2024 – Adventure Without Limits at Calvert Trust Exmoor. In this special reflection, we sit down with brothers Sam and Alex Bolton, who took part in a weekend full of excitement, courage, and firsts. With heartfelt input from their PA, Natalie, we hear what it meant for their family to be part of an inclusive adventure experience where barriers were broken, and limits redefined. From climbing walls to zip wires, canoeing to abseiling, the Boltons share how the weekend opened doors to activities they never imagined possible. This is more than just a trip down memory lane – it's a celebration of possibility, accessibility, and the joy of trying something new. Come be reminded of the power of adventure, community, and the lasting impact of creating spaces where everyone can thrive.🔔 Don’t forget to like, comment, and subscribe for more content on living with SMA and thriving as a parent! #LivingWithSMA #Motorhood #ParentingWithDisability #SMA #AdaptiveParenting THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul..If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

April 7, 2025Episode 4331 min

EP:43 - Motherhood, My Way: Parenting with SMA

Motherhood & Living with SMA: Everything You Need to Know  Description:  Becoming a parent is a life-changing journey, and when you’re living with a long-term condition like Spinal Muscular Atrophy (SMA), it comes with its own unique set of challenges and joys. In this video, we dive into Motherhood—the experience of parenting while managing a disability.  Join us as we discuss:  ✅ Preparing for parenthood with a long-term condition  ✅ Adaptive parenting techniques & equipment  ✅ Navigating healthcare & support systems  ✅ Overcoming challenges & embracing the joys of parenting  Whether you have SMA, another disability, or just want to learn more about inclusive parenting, this video is packed with insights and real-life experiences to support you on your journey.  🔔 Don’t forget to like, comment, and subscribe for more content on living with SMA and thriving as a parent!  #LivingWithSMA #Motorhood #ParentingWithDisability #SMA #AdaptiveParentingTHIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...  If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

October 31, 202431 min

Ep 42: Uni the practical stuff

Uni Life: Disabled and Thriving*In this episode, host Ross Lannon is joined by Molly Everitt and Zoe to dive into the real, practical side of university life as a disabled student. Together, they discuss everything from navigating campus accessibility to dealing with accommodations, managing workloads, and finding support networks. With personal stories, tips, and advice, this conversation covers what it’s really like to balance studies, independence, and disability. Whether you're a student or ally, this episode provides insights and practical advice to make university a more inclusive and empowering experience for everyone.

October 4, 2024Episode 4133 min

Ep 41: Getting ready for Uni

Uni Bound: Navigating University Life with a DisabilityIn this insightful episode of *Uni Bound*, host Ross Lannon is joined by guests Molly Everitt and Zoe Henderson for a candid discussion on preparing for university while living with a long-term disability. Together, they explore the added pressures of managing university life, from securing accessible accommodations in halls to coordinating support from carers. The conversation dives into the emotional and logistical challenges that disabled students face, while offering practical advice on advocating for your needs, navigating university services, and building a support network. If you're a student with a disability or simply want to understand the complexities of university life from this perspective, this episode provides invaluable insights, empathy, and encouragement.

July 2, 202439 min

Ep 40: Celebrating Pride

Join host Steven on this special Pride episode of *Pride and Possibility*, where we celebrate the vibrant intersection of the LGBTQIA+ community and disability pride. Steven is joined by three incredible guests: Shelby, Emily, and Jordanne, who each bring unique perspectives and experiences as individuals living with disabilities and proudly identifying as part of the LGBTQIA+ community.In this heartfelt and empowering episode, Shelby, Emily, and Jordanne share their personal journeys, discussing the challenges and triumphs they have faced in navigating their identities. They delve into the importance of representation, the power of community, and the ways in which their disabilities and LGBTQIA+ identities have shaped their lives.Listeners will hear inspiring stories of resilience, advocacy, and joy as our guests talk about what Pride means to them. This episode is a celebration of diversity, inclusion, and the strength found in embracing all aspects of one's identity. Tune in to *Pride and Possibility* for an uplifting conversation that highlights the beauty of living authentically and the importance of solidarity within the LGBTQIA+ and disability communities.Celebrate Pride with us and discover the incredible stories of Shelby, Emily, and Jordanne as they inspire us all to live with pride and possibility.#PrideAndPossibility #DisabilityPride #LGBTQIA+ #Intersectionality #celebratediversity HIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul... If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

May 29, 2024Episode 3942 min

EP39: Festivals and Gigs

Get ready to roll into the beat of festival vibes with our latest podcast episode, where we explore the world of festivals and gigs through the eyes of wheelchair users Jordanne, Mollie, and Ross, all living with SMA! 🎶✨Join us as we navigate the highs and lows of festival accessibility, from the thrill of inclusive experiences to the challenges faced by wheelchair users. Jordanne, Molly, and Ross will share their firsthand accounts of navigating festival grounds, accessing venues, and interacting with fellow event organisers.While the journey may have its bumps along the way, our guests will also shine a spotlight on the positive moments that have lit up their event experiences. From unique and special experiences to the triumph of overcoming accessibility barriers, these stories remind us that every obstacle is an opportunity for growth and empowerment.So grab your gear, tune into the rhythm of inclusivity, and join us for an insightful exploration of festivals and gigs from a wheelchair user's perspective. This episode promises to be a celebration of resilience, community, and the power of music to unite us all! 💃🕺🎉#LivingWithSMA #AccessibleEvents #WheelchairAdventures #InclusiveMusic

March 28, 202434 min

Ep 38: #KnowNoBounds making the outdoors more accessible

Get ready to witness an incredible feat of determination and resilience in our latest podcast episode, where two powered wheelchair users, Maxwell and Joshua, talk about an awe-inspiring journey to race up Snowdon and raise £100k for a worthy cause. 🏔️💪In this exhilarating episode, we'll delve into the inspiring story behind their ambitious mission, aptly named #KnowNoBounds. Join us as we follow Maxwell and Joshua's incredible journey, from the initial spark of inspiration to the rigorous preparation and training required for such a monumental challenge.Through their unwavering spirit and determination, Maxwell and Joshua defy expectations and demonstrate that no obstacle is too great to overcome. Their mission not only showcases the limitless potential of individuals living with disabilities but also serves as a powerful reminder of the boundless strength of the human spirit.Tune in as we hear first-hand accounts from Maxwell and Joshua about their motivations, aspirations, and the impact they hope to make through their extraordinary journey. From heart-warming anecdotes to adrenaline-pumping moments, this episode promises to inspire, uplift, and ignite a sense of possibility within us all.Join us as we cheer on Maxwell and Joshua every step of the way, celebrating their courage, resilience, and unwavering determination to reach new heights—both literally and figuratively. Don't miss out on this unforgettable adventure! 🌟🎧#KnowNoBoundsChallenge #RaceForACause #InspiredByDeterminationDonate here: https://smauk.org.uk/fundraising/2-powered-wheelchair-users-will-race-up-snowden-to-raise-100k-knownobounds/THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul... #Resonate #OutdoorAdventures #SMACommunity If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

March 8, 202445 min

Ep37 Transport for All in 2024

January 29, 202429 min

Ep 36: Resonate 2023 Lookback

Step into the great outdoors with us in this special episode of our podcast, "Resonate." Join Molly, Ben, Ellie, Sophie, and Alicia as they share their incredible experiences from a weekend event designed to resonate with adults living with SMA (Spinal Muscular Atrophy).In this conversation, our guests take you on a journey through the beautiful landscapes, shared adventures, and profound connections they discovered at this fully accessible outdoor event. But it's not just about the event itself; our guests also delve into why they can't contain their excitement for the next one. From forging lifelong friendships to embracing the spirit of adventure, you'll discover the profound impact of these gatherings on their lives."Resonate" is a testament to the strength, camaraderie, and unbreakable spirit of individuals living with SMA. It's a reminder that the outdoors is a canvas where dreams are painted, and where life's most meaningful moments come to life.Tune in to this episode and let the stories of Molly, Ben, Ellie, Sophie, and Alicia resonate with your own sense of adventure and wonder. 🌿🌄✨#Resonate #OutdoorAdventures #SMACommunityTHIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul... #Resonate #OutdoorAdventures #SMACommunity If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

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