Co-creating an activity package for people with progressive MS

Tue 05 April 2022

Oliver Symes

LEAP-MS was a lifestyle, exercise and activity package for people with progressive MS. We had a chat with Ann Jones about her experience co-designing and testing the programme from its earliest stages as a person with MS. 

The LEAP-MS online programme was designed with physiotherapists and people with MS to help people with advanced disability stay active. It included education, exercises, goal setting, and up to six physiotherapy coaching sessions and online support.

Hi Ann, can you tell us about yourself and your MS?

In 2002, in my mid-forties, I was diagnosed with secondary progressive MS. I struggle with walking, so I usually use a wheelchair when going out and about. Before being diagnosed with MS, I really enjoyed doing different exercises like skiing. Since developing MS, I’ve had to give all of that up.

So how did you get involved in the LEAP-MS study?

The LEAP-MS team, led by Professor Monica Busse, held a meeting and invited people from the local MS community in Cardiff. There were workshops where people could talk to physiotherapists, doctors, and nurses about their MS.

I found the meeting really interesting and insightful. It offered me a chance to discuss my MS with experts and professionals. And after the event, I was asked if I’d like to help design and test the activity programme.

Did you enjoy designing the programme?

I found it all really rewarding and interesting. We were asked for our opinions at every stage of the study, and I felt my insights were always valued.

The team asked for our thoughts on what the study should include to help people get active. They also asked for our feedback on their information materials, like their website. It felt great knowing that it will go on to help other people with MS.
Ann Jones

The team were also mindful of my fatigue and troubles with walking. So the group meetings were never too long and held in relaxed and accessible locations.

Did you get to try the programme?

Yes! I had a phone call with a physiotherapist first. I talked to them about the issues I have, in particular my trouble with walking. Then they recommended a range of exercises to help. I found some of the exercises difficult to start with, but overtime they helped me build up strength.

Would you say it's helped you get more active?

Taking part in the LEAP-MS study has inspired me to continue online exercise classes for people with MS. At first I found them difficult, but over time I found myself getting stronger.

Before taking part in the study, I didn’t know there were online exercise classes for people like me. Now I regularly join these classes, including seated aerobics and Pilates.

I especially enjoy online classes called Mojo Moves. The lady who runs it dresses up in 70s and 80s gear and it’s a great laugh for everyone! The LEAP-MS team worked with the company to create sessions for people who are less mobile.

Find out about Mojo Moves on their website

Online classes are a really great way of meeting new people without leaving the comfort of your own home.

Browse our free, online virtual support events

More to explore

The LEAP-MS study has now completed. The programme is still early on in its development, so isn’t available for the public to use yet. We look forward to seeing where the team take it in the future.

If you're interested in online classes, learn more our wide range of free virtual support events.

Are you interested in helping shape research? Our Research Network is a group of people affected by MS who help shape our research programme.

Find out more about the Research Network and how to join