Living With SMA

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 PAThe 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_ukIf 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.ukLiving 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_ukIf 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.ukLiving 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_ukIf 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.ukLiving 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_ukIf 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.ukLiving 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_ukIf 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.ukAdditional Links:Changing Places £30 million Investment: to Changing Places toilets in 'Amendments to the Approved Documents' The Building Regulations 2010 (July 2020): 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_ukIf 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 Twitter:          twitter.com/SMA_UK_Facebook:     facebook.com/SpinalMuscularAtrophyUK/Instagram:    instagram.com/sma_ukUSEFUL LINKS: Video that shares personal examples of NHS Funded Continuing Healthcare (CHC) & Local Authority Funded Social Care in action:NHS Funded Continuing Healthcare (CHC)Local Authority (LA) Funded Social CareWhat is the role of a PA?Personal Assistants (PAs)Employing your own PAs

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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.ukTwitter:

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: GENETICS OF SMA: CENTRES:Please click on the 'Accessing Physio & OT Support heading for list of centres

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