Hello all, my first post… struggling to keep it brief… ive been secondary progressive since 2011 but i feel ive always been progressive… cant remember when it all started prob about 20 years ago… i dont ever remember any remission days… just a slow steady decline…anyway today i can only shuffle while hanging on to my walker for grim death…and then only shuffle for a minute before i fall onto the sofa… getting a bit scared now… any advice would be very much appreciated.
Kind regards
Julia
Hi Julia,
Welcome. I think I’ve already got to the shuffle walking stage too, after 20+ years of MS, it seems I’ve moved on now from RRMS to SPMS imho.
I’m not using the walker just yet, but just the furniture walking at home, where I spend most of my days.
I have had to pause my Kesimpta DMT due to recurring infections, just not had much luck on the anti-CD drugs tbf, so it’s all about stepping up the physiotherapy exercises tbh.
Best,
JP
Thanks so much for your reply JP im beyond everything now i thought after id posted 'what do you expect people to tell you ?? Silly me…
I so wish id done the excercises i was given years ago…or rather kept them up…ive never been offered any dmt… i cannot even stand for more that a few seconds now while tightly hanging on to my frame… that’s it… thank god for my nhs powerchair but its getting very hard to even get on it…
So keep up the exercises i wish i had.
Thank you for your kind reply JP
Julia
Hi Julia,
I’ve been doing the exercising regime probably as long as I’ve had the multiple sclerosis, or even longer and in all honesty, I personally think the severity of MS affects sufferers arbitrarily.
Quite frankly, I was put off from starting on DMT in the early years, when my homeopathy therapist asked if I really wanted to be used as a guinea-pig for those kinds of medicines? Then after suffering the unwanted side effects, some of them quite severe, perhaps she was right.
The good thing I notice with exercising, is the release of endorphins you get, which means I rely less on taking painkillers.
Hang in there @Old_rocker , a positive mental attitude always lifts the mood, in the fight against this horrid disease.
JP 