Good afternoon everyone, would like your thoughts and comments. Does anyone do their physio exercises at home and do you feel they help? Someone with MS also has said to me that neuro physios don’t understand that the exercises they give us take time and effort to do, and we still have to try and fit in normal life. I am in middle of a major meltdown (mobility, spaticity, bladder etc) and keep thinking that I should be doing my exercises but then I think “what’s the point, I’m never going to get better and the excersises seem pointless”. My spacticity and mobility is so bad at present that any movement is hard, I actually got out of bed today and am now in the front room and am absolutely shattered just moving about 10 feet from one room to another. Up until the end of October I used to do a Pilates class on a Saturday and felt it beneficial. A lot of the neuro physio excersises are Pilates based but I think because I feel so rubbish, what is the point? Any advice would be appreciated. Linda x
hiya linda
i dont have a neuro physio BUT i do have access to 2 very good and honest physios.
as i understand it keeping the ‘bits’ moving is beneficial. when i had no control over my right side at all then my kids helped my limbs to keep moving. i now have very little control but what i continue to move what i can. its not as easy as saying use it or lose it cos its not that simple! if the pathways dont work and the message cant get thru via another route then no matter how much u want ‘it’ to move then it wont. i do think that some sort of perseverance is very worthwhile tho cos the brain is so complicated and we have no idea what it is capable of!
the physios understand my thinking and reasoning and appreciate that i am not giving up but i am very realistic in my body’s capabilities (or not!)
i believe tthe key to coping with ms is acceptance and honesty. and that means different things to us all!
so in short-i wouldnt dismiss physio exercises just yet. be realistic-you know ur body best remember.
take care, ellie x
my neuro physio helped me when i was first diagnosed.
she could see straight away that my posture was rubbish. i knew that because i’d seen an osteopath who re-aligned my hips because i had one leg longer than the other.
i had exercises to do but the main thing was a checklist that i had to do each time i stood up.
left shoulder in your pocket (back pocket of my jeans) because i leaned to one side.
engage abdominals
don’t lean back (which i was subconsciously doing)
loads more - it was a right performance!
wii fit and balance board really helped too.
carole x
I do my excercises given to me by the neuro physio,i try do them most days, but if i have been up and about a bit,and doing things i tend not to bother,as i feel i have done enough by being up and about for a few hours,i try and do mine on a morning before i get out of bed, if i can,and then they are done with for the day.mine help with my core strength and balance,
but dont worry if you feel too ill to be botherd,you can try again when you feel more able.
Hi Linda,
I was given exercises by neuro physio, still do the ones i like and think they help with leg spasticity. Do what I can when I can. Best one is wooden block to put toes on when standing at the kitchen counter - stretch my calves with very little effort!
Then put on 6 week course with neuro physios at the hospital (1 hour once a week)
When that finished was sent on referral to local gym neuro session (1 hour once a week) unending so go when I can.
Do think they help with mobility, circulation and mental health. So much so that I rejoined a private gym where I feel comfortable hobbling around and has a pool. Just been today makes me feel better and feet are warm.
Keep doing what you can. Jen x
Yes to both. But then I do not work any more, so have time to. I can so relate to what you say about ‘what’s the point?’ though. Sod’s law dictates that a person feels least like doing pilates exercises daily when she needs them most. It is very hard to be motivated when under the cosh with MS troubles. But you know all that, of course! It is good for morale, though, to do a few gentle exercises when you feel able to. I hope that you feel well enough to give it a whirl soon. I am sorry that you are feeling so rubbish at the moment.
Alison
Hi
I do them and they definitely help me. My standing & walking are noticably better after I’ve done them. I remember one of my physios saying she could tell from her patients which ones did their exercises at home between sessions & which ones didn’t, as the ones who did always improved more.
I’m surprised you were told that neuro physions don’t understand the time & effort involved doing the exercises. Mine have always been very patient and encourage me to take rests betwen exercises. I asked one once what the difference was between neuro physios & normal ones, and he said normal ones don’t understand the way our muscles get fatigued with neurological conditions.
I can understand you think what’s the point though. For me, if I’m feelng rubbish I don’t want to do them as I don’t want to be reminded how weak I am. But as has been said already, it’s these times when I need to do it most.
Dan
Thanks for your replies, made interesting reading and a little bit of motivation to try them when I’m being more positive. This situation is just getting more silly by the day. I’m off to the hospital this morning to do flow rate tests for the urologist who I’m seeing on Monday. The TN is now becoming unbearable, screaming out loud pain, so that will have to be rectified because I don’t do pain on any level. I have an excellent MS team working with me, I live in Dorset, so that is a great help but i’m finding it really difficult to stay positive. I am thankful I have you lot to converse with because we are all going through the same things at one point or another. Pollx seems to cope brilliantly and I enjoy reading her mail. So onwards and upwards. I know I can’t give up because that won’t help but is getting harder by the day. How some of you cope with young kids or being pregnant is way beyond me - so my hat goes off to you - don’t think I would cope in that situation, my son is grown up and lives in London, so I haven’t got that aspect to contend with. It’s my OH who gets it all in the neck! Thanks people.
Quite honestly, if I was suffering from uncontrolled TN pain, I wouldn’t be doing my pilates exercises either: I would be shredding the paper exercise sheets while swearing fluently and loudly. I really hope they give you something to get that under control and fast. Constant, severe pain is just the pits. The only time MS did pain at me wasn’t TN, it was stabbing pain in my chest, and that responded well to carbamazepine (Tegretol) - what a relief that was. I think it is prescribed for TN too, sometimes, so you might have tried it? Anyway, I hope you get that TN fixed soon.
Alison
Thanks Alison, I’m on it, can’t do pain on any level and one of the many weird things about my MS is that I don’t get any pain at present (just loads of other things), hopefullly that won’t happen or else I’ll seriously be considering a trip to Dignitas lol! Pain in your chest must have been double scary. Yes Tegretol is prescribed for TN in MS sufferers and I’m presently taking Amytriptyline but it’s not stopping it, so Tegretol is going to be the next step up. Linda x
I found the exercises they prescribed made me a lot worse so I stopped doing them. They think I was probably over-doing it and triggering fatigue.