Living with SMA - PARENTS! Ask us anything

MORE DISCUSSIONS:
https://smauk.org.uk/community-connec...

VIDEO DESCRIPTION:
SMA UK hosts Joshua Wintersgill and Jordanne Wozencroft, two young adults who have SMA answer your questions and share their experiences of growing up and living with SMA.

TIMECODES:
0:00 - Intro
1:05 - At what age did you become conscious/embarrassed of toileting with your parents?
3:25 - Periods
3:54 - We have read that some of the SMA adults decided to have a catheter at an early age.
What did you decide to do and why?
6:53 - How did your spinal surgery go? (If you have had it) How did you feel afterwards and what
was the recovery period like?
16:08 - Looking back at your time in school, do you have any advice for a child with SMA and their
parents? What would you do differently and why?
22:14 - We are constantly encouraging our daughter to do physio and exercise and try to explain
the benefits to her. Are there any exercises or activities that you have continued to do as
an adult and enjoy?
26:59 - What is one thing your parents did when you were growing up that you wished they
wouldn't do? What did they do that was useful and supportive?
31:36 - When you were younger did your parents ever talk to you about SMA and what that meant
to you?
35:04 - How do you manage needing a personal carer when trying to develop your own
relationships/friendships? What happens when you want to go out and just be with your
friends/a friend?
38:16 - Was there a point when you came to realise the impact that SMA would have on your life
How did you manage that? Who did you speak to?
44:16 - When you went to secondary school and university, how did other people respond to you
How do you think people respond to seeing someone in a power chair?
48:25 - What has been your biggest frustration/challenge? / What has been your greatest
achievement/proudest moment?
52:59 - What is the best advice to give our child about how to be independent in the future, and
what can we as parents do to help that independence?
56:07 - Please get in contact with SMA UK if you have any further questions

If anyone does have any further questions, please reach out to us and email us at [email protected]

USEFUL LINKS:

Children Education:
https://www.livingwithsma.org.uk/educ...

Teenagers - School & Beyond:
https://www.livingwithsma.org.uk/teen...

Teenagers - Support Now & Becoming Independent
https://www.livingwithsma.org.uk/teen...

Work, Volunteering & Further Study:
https://www.livingwithsma.org.uk/loca...