Hi everyone, after my diagnosis last week I’ve had to admit to myself that I didn’t fully recover after what I know now to have been my last relapse.
I’m left with a weak leg that gets more and more tired with use (and harder to control after a drink or two haha!).
Would physio help me regain some strength back or is it gone for good?
Thanks,
LL
your ms nurse should have referred you to neuro rehab.
you get physio and an occupational therapist who looks at your house and provides such things as grab rails to keep you safe.
phone your nurse and ask for these.
also these people really understand ms.
carole x
Thanks Carole.
Only diagnosed last week so I’m waiting for an appointment with a nurse to come through. Will add it to my list of questions for her!
thanks xx
Hi Lilyloo
Your MS nurse should automatically refer you, but if it’s not suggested then bring up the subject. I have three weekly contacts with a neurophysio and have progressive exercises which have improved my leg, arm and core functions and are making a huge difference. The only thing I would say is that even when i don’t feel like doing the exercises I force myself and it’s paying dividends. Onwards and upwards. X
Physiotherapy is absolutely essential for the MSer. A good physiotherapist will go through a series of exercises that you can do alone. You’ll probably find that you see a physio weekly for a number of weeks, then they’ll leave you alone to get on with the exercises on your own. (Limited resources!)
If you can, get into the habit of doing the exercises every day. I used to get up and go straight into my living room where I’d stick the news on. I’d lay on the floor, do a series of exercises (taking maybe 20 minutes), then usually use my rowing machine for maybe 10 minutes (building up slowly). I’d then have a shower and get dressed etc.
I did this pretty much every day for several years. I can’t say I improved anything much, but I perhaps kept the oncoming disability at bay for a while.
Unfortunately a series of relapses gradually put paid to my being able to get up off the floor. Then I stopped being able to use the rower. I stick kept the routine, doing the exercises on the bed for as long as possible, it’s only been the last year or two that I’ve been unable to even do that.
Physiotherapy and therapists have helped me at every step of the way. I still see a physio who encourages me to do what little I can.
I wish I’d started much harder, much earlier. When I was first diagnosed, I didn’t have access to physio and didn’t understand the need to get fit and stay fit. I wish I had. I started physio from a position of having already lost most of my core strength.
So when you see your MS nurse, make sure you ask her for a referral to physio. And keep the relationship with your neuro-physio team alive.
Sue
I have a weak leg too. The physio gave me exercises like Pilates to strengthen my middle and help me keep my gait aligned properly - I had been having secondary soft tissue hip problems (very painful!) on account of swinging the leg round instead of lifting it (I expect you know what I mean by that). In my case, the neurological damage was done and had already mended as much as it was going to, but the exercises have helped my general health/strength/balance no end. Well worth it.
TBH, I did have a hospital physio referral and that was a complete disaster - she really was only interested in the needs of people way more disabled than I was then - my wonky leg and I got very short shrift! Or so I felt, anyway. The useful one was a physio I went to privately some time later.
Alison
Thanks for your replies everyone. So interesting to hear where people are in their journeys.
Definitely sounds like it’s worth pushing for physio, thanks for the advice.
LL x
Hi I’ve got physio who comes to house and physio assistant the come a couple times a week, had grab rails fitted and getting new stair rails. The OT is coming today to assess my shower and make into wet room. Physio is great but feel wiped out after it which I find strange after visiting gym 5 times a week in December 2016. Now cannot walk unaided at the moment x
Hi LilyLoo,
I was diagnosed with PPMS about seven years ago. I try to do the exercises given to me by physiotherapy, every day
One a week I go on a exercise bike that measures how much work I can do in ten minutes. Each week I have been able to do a little bit more than the previous week.
If I wasn’t exercising I’d become more disabled each week. So, in answer to your question, it’s not gone for good; but you do have to work hard to get it back. and to keep fit.
Best wishes,
John
Hi, I was having weekly physio to help my stiffness and a bad back which was being exacerbated by walking unevenly with one stick (due to weaker right leg and swinging it round as you described). I bought a rollator and it has improved everythng massively. My physio said it was a great idea and she wished more of her patients would change from a stick so easily. The gait improvement is huge, the back is pretty much fine and I now do physio once a month just to keep me loose. I do Pilates twice a week to help with general strength (which it does). Physio is a great place to start then any sort of regular exercise, stretching or core strength building is always going to help.
Good luck,
sally
i fully agree with ginsozzled that using a walking stick makes you lop sided.
hiking poles keep you upright as well as rollators.
i had a few sessions with our lovely local osteopath who would man handle me into alignment.
thinking i need a few top up sessions now as its several years since i saw him.
pilates is fantastic for alignment and core strength.
trouble is that i can no longer go to the classes because there are too many people in it and not enough one to one work.
hoping that classes will be held at our ms therapy centre.