hi everybody i hope you dont mind me coming back to this forum after 2/3 years! i have been on the forum many times reading all your messages sometimes crying and occasionally smiling and i feel that now is the right time for me to join you all my condition has started to decline and would like some support at times
i am not on any meds at mo having just come off fampyra
can anybody with ppms suggest anything i could take as my legs and feet are really stiff and mobility dreadful
I struggle with similar problems. I have experimented with lots of different things. Iâll bundle a few, to see if they give you, or anyone interested, some ideas for relief.
A vibrating massager is a handy gadget for stimulating muscles. Vitamin D3 5000iu for a natural topper on the bodies needs. A garden hose on jet setting with cold to invigorate & get circulation going. Citrus fruits, cashew nuts, oily fish for Omega 3 & Heinz 5 beans. Eating good healthy foods in general seems to work for me. Mushrooms, eggs, steamed Broccoli, Fizzy cold Ginger Beer. Meditation & deep undisturbed sleep. Comedy programmes for the much needed laughing & smiles.
Once the food & waking up of the body has happened. Relaxing exercises & a cold spray mist gun to keep the bodies temperature down. Having hobbies to keep the mind active on positive feel good things. Sitting in a sunny garden with nature or getting out to a Park is good. Being happy & avoiding the wrong vibrations.
I hope something Iâve mentioned inspires & helps you feel better. Take care out there.
Hi Lozzie I have had PPMS for over twenty years and am now in a wheelchair, during that time I have tried all manner of medications and I recomend you speak to doctor physio or MS nurse. We all respond differently and I am awaiting trials for a Baclofen Pump as my latest in my battle against my MS. Good luck. and Welcome
I have a scooter, a wheelchair and a rollator. It helps the spirit to know that even if I donât get out much, I can get out if I want to. Obviously I donât know what stage youâre at but the scooter definitely gives me more independence.
Hobbies and some daily pleasures help. I do the Times crossword every day; itâs taken me years to get to this level and I have aspirations of entering the annual competition. It may never happen but the thought drives me on sufficiently to look forward to something. I also play scrabble on the tablet against the computer-it helps a lot.
Do you have a partner/carer/friend who can give you regular daily muscle stretches? My missus stretches my calves and hams every morning, and without this I would struggle to get up onto the rotastand to transfer to the wheelchair. Also physioherapy gave me a t-shaped bean bag type thing which I use for a variety of exercises: lower leg lifts, bridging, knee clenching etc. Alll good for the leg muscles which I can use, and for my core muscles.
My carer does the stretches for me on the two days a week that she comes in. Iâve alays found this sort of mind numbing exercise easier to do with someone to encourage me.
Lozzie I do about ten of each excersise most days, today was a miss beccause Heather was in rush to meet daughter but I have never been to hard and fast on things. We also have a huge ball about ten quid from Argos Heather huts my ankles on it and bends my legs towards me it makes it so much easier. I have hand rails in bathroom and do a few squat type things when in there gor a shower wash etc. Remember you can exhaust yourself so go steady.
Well, Iâm not a physio, so donât take my word for any of this, butâŚ
Donât confuse stretches with muscle exercises. My carer calls stretches âyour exercisesâ . Theyâre not, they simply stretch out muscles which have become stiff and contracted by lack of use, and should be done carefully and slowly while the muscles extend. Hold for 30 seconds or so. Repeat if required.
âExercisesâ is where you make the muscles work as best you can, and repeat as many times as you think fit. You donât want to overdo it, and leave yourself exhausted. Some muscles may not appear to work at all, but even trying to work them is working them.
My main stretches are:
calf muscles- I lie flat and Ruth pushes the balls of my my feet so that my heels are being pulled away from my knees.
hams- similar, but by lifting the leg of the bed I can feel my hamstring start stretching out, and my knee drops visibly.
we have a whole variety of other stretches, and a range of exercises, taught by the physio dept at hospital. Glad youâre getting seen by a physio.
No, never tried that, hope it helps you. I donât seem to tolerate medication very well, so whilst what I take does not stop it completely, as I am now used to those, I am reluctant to try something else.
If they stop doing anything, I think I would try something else, but feel at the moment for me its best not to ârock the boatâ.
