Jo Reffin is a specialist neuromuscular physiotherapist at King’s Hospital NHS Foundation Trust in London. Jo has worked with neuromuscular colleagues from across the UK to create updates to exercise advice for adults living with a neuromuscular condition. Read her blog below about her work and the new recommendations launched by Muscular Dystrophy to stay active and fit.
2020 was a strange and challenging year for us all; whether we are people living with a neuromuscular condition having to shield, work from home and home educate, or health care professionals. Many of our physiotherapy colleagues have been deployed to the front line treating people with Covid-19. Others have continued their usual work, but remotely instead of face to face. This has presented new challenges and opportunities and we have all become better at making this work – assessing and advising/managing our patients remotely.
This time last year I agreed to the task of updating the ‘Exercise advice for adults with muscle-wasting condition’ document and recruited some close colleagues to offer insight and support. The process has been rather slow, due to the pandemic and the difficulties meeting face to face. Some of us are much more technically minded than others and have supported this process remotely which has been a fun and positive experience.
We know our neuromuscular patients are resourceful, innovative and downright stoic! Like most, our outpatient neuromuscular physiotherapy service at King’s became virtual in the spring of 2020. We were able to run a few face to face appointments in the autumn, but as of January 2021, we had to revert back to virtual clinics. Despite this, I have been delighted by how many people have kept as active as possible within the confines of shielding, closure of hydrotherapy pools, gyms and other venues, which would normally support your exercise needs. So many of you are embracing healthy living in whatever way you can despite everything else going on in the world.
We are all aware of the perils of home working or having to stay at home for health reasons; the key one being not moving as much or challenging yourself in all those day to day activities, such as leaving home, walking to the car, transferring in and then heading off to work only to reverse the process at the other end before starting a day’s work.
As we are all in the middle of another lockdown, this seems like a perfect time to relaunch our new recommendations for staying or getting more active and fit.
As a specialist group of adult neuromuscular physiotherapists, we are only too well aware that all our patients are unique individuals and it is impossible to provide everything required by everybody in just one document.
This document will just serve as a starting point for thinking about these things and should promote discussion in clinic, in the community and at home. Please always work closely with your medical and therapy teams, and your vitally important carers and family members, to do what feels right for you and your body at the time.