Welcome to a truly inspiring and heartfelt episode of our podcast, where we embark on a deeply personal journey exploring the powerful connection between mental health and living with a long-term condition. In this first part, we delve into the extraordinary story of how an individual with Spinal Muscular Atrophy found solace and support through an unexpected bond with a Mental Health Professional during their time in university.
Join us as we unravel this remarkable tale of resilience, compassion, and mutual growth. We'll hear first hand accounts from Becca and Ellie, sharing their lived experiences of navigating the challenges of Spinal Muscular Atrophy while simultaneously facing the complexities of mental health.
Through their story, we witness the transformative power of genuine human connection and the incredible impact that compassionate support can have on one's mental well-being. Together, they formed a unique alliance, where their shared experiences and unwavering support became a lifeline in the face of adversity.
In this episode, we'll explore the nuances of their relationship, the challenges they overcame, and the invaluable lessons they learned along the way. We'll also delve into the broader implications for the intersection of mental health and long-term conditions, highlighting the importance of accessible mental health support for all individuals facing similar circumstances.
This episode is an emotional and thought-provoking testament to the profound impact that genuine connection and understanding can have on one's mental health journey. It serves as a reminder that no one should face the challenges of a long-term condition alone.
So, whether you're personally touched by a long-term condition, passionate about mental health advocacy, or simply seeking inspiration and hope, this episode is a must-listen.
Tune in now and join us as we embark on a transformative exploration of mental health and living with a long-term condition, through the remarkable journey of our guests and their connection during their university years.
#MentalHealthJourney #LongTermConditionSupport #InspiringConnections
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 do have any questions for Becca or Ellie and the team or 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.
Welcome back to our podcast, where we continue to explore the fascinating journey of transitioning into school. In this special episode, we shift our focus to the next stage: transitioning from primary to secondary school.
Join us as we dive deeper into this significant milestone in a child's educational journey. We'll hear from Grace McManus (mum of Sonny who lives with SMA) and our host Ross Lannon who share their insights and experiences on the social, emotional, and academic aspects of transitioning to secondary school.
Building upon our previous discussion on nursery to primary transition, we'll tackle new challenges and opportunities that arise during this period. From navigating a larger school environment to adapting to new subjects and routines, we'll explore the practical considerations and offer strategies to help ease the transition.
Additionally, we'll delve into the emotional dynamics that both students and parents may encounter during this pivotal time. With the right guidance and support, we can empower our children to embrace this new chapter and thrive in their secondary school experience.
So whether you're a parent, educator, or simply curious about the transitional journey, this episode is packed with valuable insights and practical advice. Join us as we continue to uncover the keys to a successful transition from primary to secondary school.
Tune in now and let's embark on this exciting exploration of transitioning into school.
Welcome to our next episode, where we explore the exciting and sometimes challenging journey of transitioning into school, from nursery to primary.
In this episode, we'll be diving deep into the many aspects of this significant milestone in a child's life with SMA. We'll hear from Portia Thorman and Charlotte Lavelle, as we explore the social, emotional, and academic dimensions of transitioning to primary school.
We'll discuss the practical considerations of preparing for school, from selecting the right school to managing the logistics. We'll also explore the emotional challenges that children and parents may face during the transition, and offer strategies for coping and thriving during this time of change.
Through it all, we'll seek to build a deeper understanding of the importance of this transition for a child's growth and development, and how we can work together to support children and families during this exciting and sometimes daunting time.
So if you're a parent or caregiver navigating the transition to primary school, or a teacher or professional working with children during this critical phase, then join us for this engaging and informative episode.
Tune in now and let's explore the many dimensions of transitioning into school from nursery to primary.
#TransitioningToSchool #StartingPrimary #ChildDevelopment #LivingWithSMA
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 do have any questions for Portia, Charlotte, and the team or 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.
Welcome to the latest episode of our podcast, where we take an unflinching look at the state of care in the UK today.
As one of the wealthiest countries in the world, the UK has a moral obligation to provide high-quality care for all its citizens, particularly those who are vulnerable or in need. But as we'll discover in this episode, the reality is far from ideal.
We'll be delving deep into the complex web of challenges facing the care system, from chronic underfunding to understaffing and inadequate training. We'll hear from Ross Lannon, Luis Canto E Castro, Michaela Hollywood, and Katy Etherington who are directly impacted by the system, as we explore the causes and consequences of the current state of care in the UK.
But we'll also be shining a light on the inspiring efforts of individuals and organizations who are working tirelessly to improve care for all. From innovative new technologies to community-based initiatives, there are glimmers of hope and progress amidst the challenges.
So if you're ready to confront the harsh realities of the state of care in the UK, while also discovering the promising developments and solutions emerging, then join us for this crucial and thought-provoking episode.
Tune in now and let's start a conversation about how we can work together to ensure that every person in the UK receives the care they deserve.
*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/SpinalMuscularAtrophyUK/
If you do have any questions for Ross, Michaela, Katy, Luis, and the team or 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.
Welcome to a brand new episode of our podcast, where we explore the incredible power of sport to transform lives and unleash human potential!
In this episode, we'll be diving deep into the many ways in which sport can inspire, challenge, and elevate us to new heights. From the thrill of competition to the camaraderie of team spirit, sport has the unique ability to bring out the best in us, both as individuals and as a community.
We'll be hearing from Cath McNicol and Jack Humphries. They'll be sharing their personal stories and insights, and discussing the many ways in which sport can help us achieve our goals, overcome obstacles, and live our best lives.
So if you're ready to be inspired, motivated, and energized by the incredible potential of sport, then this is the episode for you!
*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/SpinalMuscularAtrophyUK/
If you do have any questions for Jack, Luis, Cath and the team or 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 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.
Welcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)
SMA UK host Ross Lannon chats to guests Luis Canto E Castro and Cath McNicol about festivities and how we can surprise our loved ones with gifts this Christmas when you have a disability.
*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/SpinalMuscularAtrophyUK/
If you do have any questions for Ross, Luis, Cath and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA - 'How to surprise your family at Christmas' disclaimer:*
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)
SMA UK host Ross Lannon chats to guests Sandie Roberts and Maxwell Mcknight about social media. Exploring the pros and cons and looking at how it can offer a great job opportunity for people and even lead to a career!
*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/SpinalMuscularAtrophyUK/
If you do have any questions for Ross, Sandie, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA - 'Social Media' disclaimer:*
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)
*TRIGGER WARNING*
The conversations that take place today are of a sensitive nature regarding mental health, disability and mindset.
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. ❤️
SMA UK host Ross Lannon chats to guests Anna Litvinova and Luis Canto E Castro about 'The Right Mindset'.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Anna, Luis and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
SMA UK Support & Outreach Service:
https://smauk.org.uk/the-outreach-service
Mind:
https://www.mind.org.uk/information-support/
Samaritans:
https://www.samaritans.org/how-we-can-help/contact-samaritan/talk-us-phone/
Living With SMA - 'The Right Mindset' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 2️⃣ of Episode 21 of the #LivingWithSMA Podcast we'll be looking at the pros and cons of university. We'll also be talking about work experience and sharing advice for those who decide not to go to university.
#LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Mia, Steven and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA-'Higher Education, University & the transition into employment' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 1️⃣ of Episode 21 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon talks to Mia Myers and Steven Jones about the university experience. They also look at whether having a disability makes you look at things differently when exploring higher education and they talk about accessibility and fighting for justice.
Watch this episode on our YouTube channel here.
Ross, Mia and Steven all come from different angles. Mia is currently at University, Steven has graduated from University and in employment and Ross did not go to university, but is doing also in employment and doing a career he loves.
The aim of today's podcast is to share the experiences of Ross, Mia and Steven and to show that regardless of your disability, interests and education, you can still get to where we want to be!
#LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Mia, Steven and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA-'Higher Education, University & the transition into employment' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 3 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about the barriers they faced during their secondary school experience. We also talk about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties.
#LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 2 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about the barriers they faced during their secondary school experience. We also talk about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties.
#LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 1 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about having a disability and being in the education system. We discuss how difficult it was for Sam and Alex to find an accessible school close to home and we also talk about social media and how it has developed over time.
#LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
PART 4 provides a fitting finale to a Episode 19 of the #LivingWithSMA Podcast. SMA UK Host Luis Canto E Castro chats to 11 year old Sonny and his mum Grace about what life is like with SMA.
As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience.
Watch this episode on our YouTube channel here.
#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Luis, Sonny, Grace and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 3 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 18 year old Maxwell Mcknight about what life is like with SMA.
As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience.
Watch this episode on our YouTube channel here.
#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Luis, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 2 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 56 year old Joan Turner about what life is like with SMA.
As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience.
Watch this episode on our YouTube channel here.
#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Luis, Joan and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In PART 1 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 23 year old Becca Torricelli about what life is like with SMA.
As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience in this episode.
Watch this episode on our YouTube channel here.
#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Luis, Becca and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In our final part of episode 18, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend talk about:
- The rewards and benefits of being a PA
- The media representation of PA’s and Care in General
- ‘The Fundamentals of Caring’ film starring Paul Rudd, Craig Roberts and Selena Gomez
- What would you say to someone potentially thinking about becoming a carer?
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
Today in part 2 of this episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend talk about setting boundaries with your PA, the relationship process, the skills needed to become a PA and the importance of empathy and compassion.
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In this latest 3 part episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend have a very intimate conversation, talking about the positive side of care and the benefits that both the carer and the disabled individual can get from this relationship.
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In the final part of this 'About Toilets' episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss shared space bathrooms, queue jumping and ignorance and feeling like a burden.
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories on accessible toilets.
You can contact SMA UK on the following social media platforms ⬇️⬇️
Twitter: twitter.com/SMA_UK_
Facebook: facebook.com/SpinalMuscularAtrophyUK/
Instagram: instagram.com/sma_uk
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'About Toilets' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
In part 2 of this 3 part episode 'About Toilets' episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss gender neutral bathrooms, policy standards and lack of awareness.
Watch this episode on our YouTube channel here.
Each of our guests today shares their own personal views and individual stories on accessible toilets.
You can contact SMA UK on the following social media platforms ⬇️⬇️
Twitter: twitter.com/SMA_UK_
Facebook: facebook.com/SpinalMuscularAtrophyUK/
Instagram: instagram.com/sma_uk
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Additional Links:
Changing Places £30 million Investment:
https://www.changing-places.org/local-authority-funding/ps30-million-investment-to-provide-changing-places-toilets
References to Changing Places toilets in 'Amendments to the Approved Documents' The Building Regulations 2010 (July 2020):
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/901882/200717_AD_M_July2020_amend.pdf
Living With SMA - 'About Toilets' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Welcome to the Living With SMA Podcast.
This is not just a standard episode on toilets. In this latest 3 part episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss and share their own personal views and individual stories on using accessible toilets in the UK.
Watch this episode on our YouTube channel here.
Luis, Jasmine and Ross are talking about the challenges they face on a regular basis and share some ideas on what they think toilets should look like in the future and where they believe people are going wrong.
Twitter: twitter.com/SMA_UK_
Facebook: facebook.com/SpinalMuscularAtrophyUK/
Instagram: instagram.com/sma_uk
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Welcome to the Living With SMA Podcast. In this latest episode, Michaela Hollywood, Luis Canto E Castro and Katy Etherington talk openly about Personal Assistants and share their own personal views and individual stories.
Watch this episode on our YouTube channel here.
-- SOME BACKGROUND --
There is a huge shortage of PAs in the UK at the moment, and this is impacting on thousands of people across the disabled community.
To promote a broader view of what it's like to be a PA, and to share the brilliant work PAs do, SMA UK would love you to share your pictures and PA stories using the hashtag #ItsNotJustCare , tagging SMA UK on social media and / or emailing: connections@smauk.org.uk
You can contact SMA UK on the following social media platforms ⬇️⬇️
twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk
USEFUL LINKS:
Welcome to the Living With SMA Podcast. Today SMA UK Host Kerry Thompson talks to Sue Tucker and Clare Gray about Health Screening with a focus on mammograms and cervical screening.
If you prefer to watch this episode, please visit our YouTube channel here.
Kerry is 42 years of age. At 24 she was diagnosed with a rare form of Muscular Dystrophy called FHL1 Gene mutation. Kerry writes the blog 'My Life Kerry's Way' (kerry-thompson.com), she is a campaigner for Disability Rights, most notably for her work campaigning for Changing Places Toilets and for better accessible housing. Kerry also works part-time for the charity MDUK.
Sue Tucker is 56 years old and has SMA Type 2. Sue has been working in accountancy for a number years and currently lives in Devon.
Clare Gray is 52 years old and has SMA Type 2. Clare has worked in the disability sector for 30 years and currently works for one of the largest charities in the country, Shaw Trust, employed as their Organisational Lead for Disability Advocacy. Clare is a member of the Independent Living Strategy Group, a member of the APPG for Disability and the Professional Advisory Group for the Disability Confident Scheme. In 2018, she joined the Advisory Board for the government think tank at 'Reform' and more recently became a member of the Health Model Advisory Group for DWP and project lead for the Power 100, a publication in its fifth year profiling the most influential disabled people in the UK. Clare has been involved in the APPG Women and Work Committee, contributing to the recent report on Women Returners.
Each of our guests today shares their own personal views and individual stories.
If you do have any questions for Kerry, Sue, Clare and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscul...
Instagram: https://www.instagram.com/sma_uk
Welcome to the Living With SMA Podcast. Today SMA UK Host Steve Jones talks to Eden Kent and Josh Wintersgill about SMA Type 3.
If you prefer to watch this episode, please visit our YouTube channel here.
Steve is 28 years of age, lives in London and currently works for the UK Government in the Civil Service, where he has worked in a number of different roles from EU Exit to Code Response and is now involved in the HMRC. Steve also has SMA Type 3.
Eden Kent is 21 years of age and is in her final year at the University of East Anglia studying Psychology and also has SMA Type3.
Josh Wintersgill is 28 years old, he was diagnosed with SMA at 18 months old. Josh graduated University in 2015 after studying IT, Management and Business. He worked for a couple of years in cyber security then founded Able Move 3 years ago, working closely within the aviation and travel industries.
Each of our guests today shares their own personal views and individual stories.
If you do have any questions for Steve, Eden, Josh and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscul...
Instagram: https://www.instagram.com/sma_uk
Welcome to the Living With SMA Podcast. Today SMA UK Host Ross Lannon talks to Kerry Thompson about blogging and career opportunities. Each of our guests today shares their own personal views and individual stories.
Ross is 28 years of age, lives in Cornwall and has SMA Type 2. He is a lifestyle and disability blogger (alifeonwheels.co.uk) studying journalism and is also Co-presenter at CHAOS Radio.
Kerry is 42 years of age. At 24 she was diagnosed with a rare form of Muscular Dystrophy called FHL1 Gene mutation. Kerry writes the blog 'My Life Kerry's Way' (kerry-thompson.com), she is a campaigner for Disability Rights, most notably for her work campaigning for Changing Places Toilets and for better accessible housing. Kerry also works part-time for the charity MDUK.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Ross, Kerry and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
SMA UK Host Mia Myers talks to Jordanne and Beth about periods and how to manage them.
The topic of periods is something pretty taboo in society and not really spoken about enough. So hopefully this conversation today will be a small part of widening discussion of this topic.
We need to make sure that we talk about it!
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Mia, Jordanne, Beth and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
In a conversation about their lives, Toby (SMA UK Trustee) and Andi (Treat SMA) talk about getting kicked out of university, mental health, treatment, work, healthcare, support and more….
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Toby, Andi and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
Welcome to the Living With SMA Podcast. Today SMA UK Host Martyn Sibley talks to Portia Thorman and Mark & Panna Wilson about their family journeys from diagnosis to school and Nusinersen treatment. Each of our guests today shares their own personal views and individual stories.
Portia reflects on her family’s SMA journey with Ezra who is now aged 4.5 years and has SMA Type 1.
Mark and Panna reflect on their family’s SMA journey with Adi who is now aged 5.5 years and has SMA Type 2 .
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Portia, Panna, Mark and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
Welcome to the Living With SMA Podcast. Today SMA UK Host Mia Myers talks to Ellie Darby-Prangnell and Sophie Bradbury-Cox about Fashion, Make-up and Confidence.
Mia will be leading a number of episodes talking to people from the SMA community, focusing on specific issues that women and non-binary people may disproportionately face. Each of our guests today shares their own personal views and individual stories.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Mia, Ellie, Sophie and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
Chris talks to his brother Alex, asking him what it's like having a brother with SMA.
They both share a passion for sport and are massive fans of Northampton Saints. Chris has also coached his brother Alex, helping him to sporting glory by winning the National Championships in flag football and being named final MPV in 2017.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Chris, Alex or the team at SMA UK please email us at connections@smauk.org.uk
SMA UK Host Martyn Sibley talks to Emma Vogelmann, Ross Hovey and Olivia Webster about their experience with Risdiplam. Each of our guests today shares their own personal views and individual stories.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for Emma, Ross, Olivia and the team at SMA UK please email us at connections@smauk.org.uk
Twitter: https://twitter.com/SMA_UK_
Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK
Instagram: https://www.instagram.com/sma_uk
SMA UK Host Jordanne talks to her sibling Shannon about their relationship growing up and what things are like now.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk
SMA UK Host Suzanne talks to her mum Margaret where we hear about her experience as a parent and the SMA diagnosis experience 25 years ago.
If you prefer to watch this episode, please visit our YouTube channel here.
If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk
SMA UK Host Martyn Sibley talks to Peter Hartley, who shares his personal journey to a diagnosis of SMA Type 4 in adulthood. Talking about how this ‘Adult Onset’ form of the condition has changed his life, Peter describes some of the challenges he’s faced and overcome and how he’s adapted to living with SMA.
You can find additional information on Adult SMA through the Spinal Muscular Atrophy UK website links below:
LOOKING AFTER YOURSELF IF YOU'RE AN ADULT WHO HAS HAD A RECENT DIAGNOSIS OF SMA:
https://smauk.org.uk/recent-diagnosis-adult-onset-sma
THE GENETICS OF SMA:
https://smauk.org.uk/the-genetics-of-5q-sma
NEUROMUSCULAR CENTRES:
Please click on the 'Accessing Physio & OT Support heading for list of centres
https://www.livingwithsma.org.uk/adults/posture-movement-exercise-adults
Following on from Episode 2 on Home Adaptations, SMA UK Host Josh Wintersgill talks with Julian Fiorentini about the challenges he faced around finding and renting accommodation in the UK. Josh shares his journey moving away from home at 18 years of age to finding accommodation and living independently.
If you do have any questions for Josh, Julian and the rest of the team at SMA UK please email us at connections@smauk.org.uk
SMA UK Host Josh Wintersgill talks to Julian Fiorentini, who shares his personal journey from school days, through living in a care home to his experience of making adaptations to his home, as an adult. Not everyone will need or use the same adaptations in their home, but we hope this conversation gives you a greater understanding of Julian’s own experience and views.
If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk or if you would like more info please browse through out website here: https://bit.ly/3wwfoc4
SMA UK Hosts Josh Wintersgill, Becca Torricelli and Emma Vogelmann talk about mental health and wellbeing during the pandemic, sharing their own personal views and individual stories.
