It’s the reason why I’m as disabled as I am. Muscle wastage is a serious issue.
I think everyone who gets a diagnosis of MS should also get good, experienced neuro-physio help at the beginning. I was told every time I saw a physio (which would be for about 3 visits each time then stop) that my core was weak. I was never given any effective exercises to do, let alone a focused exercise plan/regime, until it was too late. I actually didn’t understand what they meant by a ‘weak core’!
I developed foot-drop, suffered more and more core wastage, still never got any help. Eventually was referred to orthotics, where I was given a 15 minute appointment that resulted in my being given a ‘Neurodyn’ foot brace. The orthotist put it on me, spent no time teaching me how to put it on myself, then sent me away. That resulted in my getting a badly ripped open blister on my heel. Which meant even if I knew how to put the Neurodin on, I couldn’t use it for weeks, till the injury got better. Which it never did.
I suffered a really dreadful relapse, which put me in hospital, unable to move or feel anything below the waist for weeks. Eventually I was moved to a residential neurological rehab unit, where I finally got some effective physio. Too late.
I’ve been unable to walk since then. I pushed until an application for funding of FES was submitted. I didn’t know that my CCG had a more or less blanket refusal on applications for FES (except for isolated special cases which MS does not and will not come under). Eventually, 6 months later, I discovered that my application had been refused - although nobody thought of telling me this. And I also discovered how to self fund it.
I self funded FES. I use it a very small amount. Only to go about 10 metres at a time, about 3 times per day, using a walker. I lean too heavily on the walker, which has currently given me a severe shoulder injury. So right now, I can’t walk at all. I have severe shoulder and hip pain for which I’m seeing a private physiotherapist. I’ve just moved my next FES appointment up, hopefully I can get the hip and shoulder pain sorted and try to stimulate the hip and the foot with a dual unit I tried once before but we never managed it. This time I have more experience and more resolve.
My core is still very weak. I really wish I’d been taught how to strengthen it when I still could. I wish everyone who has a diagnosis of MS would start to get, and keep their core from withering away. It makes one hell of a difference later.