Living With SMA

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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 [email protected]

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: [email protected]

You can contact SMA UK on the following social media platforms ⬇️⬇️

twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk

USEFUL 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 Care
• What is the role of a PA?
• Personal Assistants (PAs)
• Employing your own PAs