“Just a few days into lockdown, an email landed in my inbox from Action Duchenne offering us a free webinar with a physiotherapist. I bookmarked it, procrastinated about booking a place and thought nothing much of it – far too much to do, too busy, too stressed, and anyway, I know about Fred’s physiotherapy. Luckily, my husband got the same email, and nudged me into action to sign up – and I’ll forever be grateful that he did.
Isolate, don’t vegetate webinar
We both attended the Isolate – Don’t Vegetate! webinar with Marion Main, and from the first minute we were hooked. Marion was so charismatic – but also pulled no punches. She not only gave us practical, fun, realistic advice and guidance about how to engage Fred in his daily physio, but also warned us that if we didn’t take it seriously, it could have an extremely negative impact on Fred’s mobility. Having told ourselves that he’d be fine as he was still walking around the house, she assured us that he absolutely would NOT and that we had to make moving a priority. It’s what we needed to hear!
She advised that most boys at primary school do an average of 5,000 steps a day at school, and encouraged us that we should try to mimic this number throughout lockdown. We bought Fred a FitBit and made a plan…
Fred had volunteered to do a sponsored walk to help support charity that had been forced to cancel its annual fundraising event of cycling from London to Paris. We worked out that if Fred could walk around 4.5km every day between that date and ‘crossing the finish line’ he could make it. It was a huge challenge and extremely ambitious – we didn’t even think he could walk that far in a week, but we were shocked by what he showed us he could do.
Building up stamina
Having heard Marion’s words and liked her fun approach, Fred was so enthusiastic about getting going. Each day he recorded his steps and the distance he’d walked (not all in one go – we took little mini walks to the postbox to begin with!) and before long he was doing his 5,000 easily.
What had started out as a bit of a chore became a real pleasure – we even had a few walks with our young dog across fields and down footpaths that previously were out of bounds – we’d never have been able to get the wheelchair there, and neither Fred nor us would have believed that he could walk it, so we wouldn’t even have tried.
It gave us not only the satisfaction of ticking off the physio each day, but gave us so many wonderful memories that we would otherwise never have had. We never dreamed we’d have a family dog walk through the woods as the sun set, and yet we did it almost every week!
He gradually built up his stamina, taking it slowly at first, and on occasional days when he was feeling particularly strong he would do more – one day he did 11,500 steps! We couldn’t believe it. He also started riding his bike again – something we thought he’d never do again – which again gave us some brilliant times together.
Positive outcomes
Fred raised over £1,000 for charity through his sponsored walk, and was given a medal from the charity, and a special award from his school for inspiring the students and teachers with what he’d done. His sense of pride was so incredible to see, and has made him look at what else he might be capable of.
For us as his parents, the sense that we were doing something for him and not just letting his condition get the better of us was immense. Lockdown would have been a very different experience without the positivity and sense of achievement that we all felt as a family. We had a few bumps in the road – if Fred fell and hurt himself, he had to take a few days off and get back in his wheelchair, and then it felt a bit like starting all over again, as his stamina dropped so quickly.
A big impact on the family
But it also showed us what might have happened if we’d never “met” Marion – would his stamina and mobility dropped so low during the enforced lockdown that he wouldn’t even be able to walk around school when he went back? It doesn’t bear thinking about. Instead, it’s given us all a renewed focus on what Fred can do rather than what he can’t, and he’s constantly surprising us.
We are so grateful to have had the opportunity to attend the webinar. We live near Bristol and would never ordinarily have had access to someone from Great Ormond Street Hospital. But just two hours of watching Marion inspired us and completely changed our approach to lockdown, which in turn is still impacting our lives now Fred is back at school. Only time will tell what the full long-term effect will be, but we’re so much more positive about the future than we might otherwise have been.”
Written by Sofie Boddy, attendee at the COVID-19 lockdown support webinars.
Watch Marion yourself
Marion Main and a host of other international experts will be at your fingertips during the virtual Action Duchenne International Conference 2020. Register below for your FREE ticket to this incredible event, all are welcome, please join us.
Duchenne Grandparents’ evening was a success
