Forum

further deterioration

Afternoon mateys!

I am experiencing yet another progression of my body failing…never ends, does it?

Since having my suprapubic catheter fitted, I only need to get on the commode for a no. 2, once or twice a day, whereas before the spc, I was transferring to the commode using my patient turner (Tina) about 5 times a day for a widdle. The other times, when in bed, I hoisted onto the commode. I must add that I am thrilled with how the spc is working, and no longer having the many wetting accidents.

But with doing the manual tranfer so much less, my legs are much weaker. My knees wont lock or hold me up for very long. I am nervous of the transfer and possible falls.

So I am now facing being hoisted more to avoid problems with the legs.

I see a new neuro next month and will mention it…as well as the heel pain and drop feet pain, which causes an awful deep ache up my legs. This is happening now when in my wheelie and bed.

Hubby has made me some padded, hard backed infill cushions for when I am sitting in my recliner. They keep my legs better aligned and reduced the sideways foot flop.The floppy feet go sideways and cause the leg ache. I use my leg puller to stretch my feet upwards, where they would`ve once been. Dunno if this is reading clearly, as it is a bit hard to describe. The pulling makes my feet feel more comfortable and eased. The tendons, ligaments etc are all pulling in the wrong direction.

So its all part of this rotten thing` I have to endure.

luv Pollx

Aww Poll

I really feel for you. Always something isn’t it? And you are always so cheerful too which helps us all. Wish we could do more for you hunni!!

Hope you get some help from your new neuro. Might be good to see someone new who will have different ideas eh?

((((Hugs))))

Shazzie xx

Oh Poll,

I’m sorry to hear this. Talk about unforeseen consequences, eh?

Who’d have thought that not needing the loo as much would actually result in a loss of strength?

It’s perfectly logical, now you explain it, but probably not something that would have featured in the pros and cons.

I wonder if there are some voluntary exercises you can do, to replace the practice you used to get, just by using the commode? But I appreciate it must be very hard to go to such efforts (i.e. do a manual transfer, or similar) if nature does not force the issue. :frowning:

Tina

x

Thanks Shazzie and Anita.

Yeh, I know the logical thing to do is to excercise the legs to keep some standing strength. But it does take an enormous amount of effort. Lifting my legs manually puts strain on my spc wound. Perhaps the nuro will refer me to somewhere for help.

You know, as much as I promote the use of wheelies when anyone is at that particular crossroads in their MS journey, there are side effects which may or may not rear their ugly heads. I dont like to frighten folk with them, as they may not ever happen to other folk.

luv Pollx

Aw that rotten Poll, it’s accepting that every time, even some silly thing crops up, it might not go away again - that’s tough :frowning:

Sonia x

Hi Poll

That’s a bummer (spot the pun!).

Seriously, it’s so unfair that the spc that makes life so much easier in one way could have such an unwelcome consequence.

As I read your post, I was wondering the same thing as Tina. Is there any way you could do some kind of leg stretches that could help to keep the strength in them. Then I saw your reply about having to be mindful of the spc wound. I do hope that a neuro or a physio can come up with a solution for you.

Tracey x

My OT gave me a raised toilet seat, which is great, but I’ve since noticed that I find it harder to get off my stair lift chair as my leg muscles are weaker as a result of not having to work as hard generally. That old saying “use it or lose it” comes to mind. Exercises needed, me thinks. Heather

Hi, yes I know exactly what you are saying, I agree about doing the exercises as if you were going to the toilet but appreciate how much time and effort it would take and then is it worthwhile. If it’s any consolation, I’m experiencing similar. Since getting an extension built I’m now sleeping downstairs which is great. Th downside is that I used to have to go upstairs at least once a day to go to bed, now I am going up once at week (at most) to clean and my stair climbing has become much worse. I’m tempted to make myself do it anyway but I’m nervous doing it when I am on my own. Cheryl:-)

Hi Poll, just read this after I posted on my own thread. So sorry for moaning when you are going through so much. How do you manage to keep giving advice and proping people up on here when you are going through so much yourself? Again so sorry for burdoning you when you have so much to deal with. I hope you get some relief from all the pain you must be in. Linda x

hi poll

sorry to hear how badly behaved your body is.

boudicca would have something to say to it!

take care and hope you soon bounce back as always

carole xx

Poll,

Get onto your GP - and ask for a referral for physio treatment. My last annual visit to a neuro - he recommended that l have a bone-density test [which was ok as l take so much vitd3] and that l should attend the Rehab/Assessment clinic. l went on Friday - and the lovely physio worked hard massage my legs and getting me to do stretching exercises. And l have another

appointment for follow-up physio. Just this one session has made a difference - so hoping to continue the good work. As they say - Use it - or Lose it. ls there a MS Therapy centre near you - alas l am too far away from one - but they should help.

The clinic l went to - they were doing wonderful things with patients who were in wheel-chairs. l think they were mainly stroke victims. But l was impressed to think that they were not going to let these people give up hope of walking again. Although the massage/neading and the stretching was ‘agony’ at first - l do feel the benefit now - and l am glad l did not scream or hit the poor girl. Had a go again this morning of doing some of the stretching - and l have found that l can let go of my rollator for longer periods.

Massaging gets the blood flowing - increasing circulation - and softening the tight muscles/tendons.

Hi Linda, please dont apologise for airing your views to me or anyone here.

Other people`s problems are as important as mine.

It helps me to know that sometimes my support and advice to others is useful. If I can think of something to suggest, then i`ll give it a go. Although my PPMS diagnosis was quoshed in favour of spastic paraparesis/cause unknown, I do have experience of PPMS type symptoms and problems.

I am naturally a very bubbly, go get `em type of person. So I keep bouncing back from one difficulty to the next…must be all these layers of flab! LOL!

Pollx

Oh poll sorry to hear. It never rains it pours hey! Good you’re keeping chirpie through it all your strength is an inspiration to us all. X

Use it or lose it indeed!

pollxx

Frances…last time I called physio in she said there was nothing more they could do for me.

Other fish to fry who will gain more, methinks!

Think I`ll wait till I see new neuro in a few weeks. A referral from her may carry more clout.

My list for her includes;

feet flopping wrong way

legs with no muscle tone and lessening ability to stand

heels…pain

Never fear friends, I aint done for yet...........nay, Im Boudica, eh?

pollxx

Hi Poll,

I’m sorry to hear about your problems hun - I think I’ll not complain about my achy legs at the minute. I was feeling sorry for myself but I’m not now. So thanks for at at least

I always so look forward to seeing your always helpful and usually cheery comments on here so its so easy to forget you have more to complain about than most of us. So I’ll send you some big squidy hugs.

I’m putting in a order for new legs for me at The New Leg Shop - would you like me to order a couple for you - and maybe one to spare??

Take care hun xxx

JBK

Oh yes please JBK! Id also need a new wiring kit and maybe a slimmer body too, oh and a better ear too. Oh the list goes on. Its all a pipe dream, I know, but it gives us summat to think/talk about, eh?

pollxx

Oh Poll, I do sympathise. Since my SPC I no longer need to get on and off the toilet apart from once every other day to use peristeen!! I too, feel I am losing the strength to be able to hold myself up! Getting off the toilet is now a nightmare. I do go to the local MS Resource centre but I’m waiting until 6weeks after General Anaethestic. Onwards and upwards…will be interesting to see what your new neuro has to say. Linda xx

Don’t be put off Poll - my GP arranged for me to have 6 sessions with the physio at the Health Centre - he looked at my legs - and my dodgy knee - and said he was sorry but he could do nothing for me!! AND - said he would have to ‘sign me off’’ of the 6 sessions. lt was the physio at the Rehab clinic who was so pro-active - bless her - she did not think it was a pointless exercise - thank god!

No need for me to tell you not to give - l expect you are rallying the troops right now!!

Hi Linda and Frances, well last night after tea, I needed the loo. Hubby assisted and boy! was I in trouble!

My left knee wouldnt straighten to lock, so all my weight went onto the right leg. My ankle went over, followed by my knee…sideways. it was all we could do to get me perched back onto my wheelie. i was left shaken, breathless and frightened.

So this morning I transferred using hoist and sling and Tina has been resigned to the garage.

Now some may see this as giving in, but I dont. I see it as accepting another way to do things.

Dont worry, I`m not upset, just relieved that I dont have to risk those dodgy transfers anymore.

luv Pollx