Living With SMA

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 [email protected]

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 [email protected]

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 [email protected] 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.