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Use it or lose it. But.....

Hi all I heard a bit of advice that was given to my mother by her MS nurse about 9-10 years ago, saying “use it or lose it”, well at the time I was using it so I disregarded it. Then I stopped using it, and have indeed lost it. Now question for you all, so I’ve almost lost my ability to walk any significant distance at all, can I get that back? I personally think it’s my reliance on a wheelchair. Simon aged 31 1/4.

hi simon

i was always a good walker but then ms reared its ugly head.

now i hobble like an old lady, s l o w l y!

i don’t use a wheelchair yet although i have priced them online for future reference.

i can walk to the co-op (about 100 yards) although i have to stop for a rest (and a coffee and a cig) at wetherspoons.

do you get physio?

carole aged 59 and 3/4

Hi Simon

I haven’t stopped using it but I am losing it.

Its a good motto to live by but when MS stops the bits working correctly that should be working then there really isn’t a lot we can do about it except keep on trying.

Jan aged 58 and 1/4

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Once upon a time I could walk further and faster than just about every one i knew. I walked about 6 miles to and from work. Then MS struck. A bad relapse put me in a wheelchair for a while. My mobility was affected after the relapse “cleared”. I could still walk 2 miles, but it took nearly 1 hour. Then I developed foot slap a couple of years ago and my mobility has been affected again. I’ve gone from using one walking stick to needing a rollator. I tire more quickly and can’t walk as far. The walk to my dentist used to take less than 10 minutes, now I have to allow 20 minutes.

Looking at my experiences I know that some of my reduced mobility is down to MS and is probably irreversible. But I also wonder if I’ve made things worse in the past couple of years by not even trying. My neuro-physiotherapist advised against weight-bearing exercise, so I gave up my daily walk. My foot slap seems to have eased, so I’m thinking about starting the walks again. I’ll be using a rollator, so my favourite route down country lanes won’t be possible. There are other routes I could do, though.

So the answer to your question is that exercise and/or physiotherapy may help improve your mobility, but you may have lost some of it. You could try using your wheelchair like a rollator. Go for a walk, pushing it along. Sit down when you need a rest. Turn round and go home. Repeat daily. You may find the distance before you need a rest increases over time. Check with your doctor or a physiotherapist before starting a new exercise routine.

I have pushy Doctors and MS nurse in a very nice way, they make sure I drag my sorry stick-body out during all weathers. They adopt the same attitude, despite the horrid pain, frightening tightness of muscles, drop foot blah blah and all the other daft things, they say keep going. I suppose it is the fear of boredom too, if I stop walking even if it is even just round the block then home for more painkillers, it is something. Yesterday the pain was disgusting, my hip stopped working, my tremor got worse so I went round the corner. I was still dragging myself about ages after that and caught up with some local gossip from a shop owner. When I got home I felt awful but, I also felt better if that makes sense. Even the chemist (who did the annual check of meds this week) said ‘Are you exercising anything will help’. I think there are points when you have to assess what you can do and it may be less than last week or last month or last year. But anything as the medics say, is good. On the days when I can’t go out and the exhaustion feels like I am being pulled through the door, I now sit and stretch my arms up and wiggle my fingers and wrists and do the alphabet with my feet. A to Z. Sometimes this is too much. The bone lady has given me an exercise to do when I can’t even get dressed. On all fours, Stretching one arm forwards, alternative leg back ha ha ha ha ha, it is like a comedy sketch and quite horrid. However, despite wobbling, falling, tremor getting worse, I do it now and then. She expects me to do it for 15 seconds twice a day, ha ha ha ha ha ha. Oh well, twice a week I think is more like it. Today is a good day, I have woken up feeling at least half-human so I am going to stretch, walk and then see what happens after that. This means that tomorrow I will be proper beggered up and worse for nowt. Hey ho, each day brings its own things. Have a good day everyone out there if you can, the sun is out, get those toes stretching if you can! Pam 57

Hi there, yes it is so true use it or lose it. I need a wheelchair for days out and so on. When I was visiting my daughter a few weeks ago, we spent the week doing day trips and I spent most of the week in the wheelchair. The following week my mobility was really bad it took about three weeks to get back to my normal.

I can see how it wouldn’t take very long to totally lose it. So scary!

I know it’s hard but any movement on your own is better than nothing.

Mags xx

Bye the way 5 weeks and two days till my 60th birthday. Yikes!!!

Trying to use it, but generally losing it. I must try and stretch more

just oldish, but feeling older

I used to use it. Then I lost it virtually overnight. Then I stopped using it. So it was lost. Then I started using it (a bit) and still didn’t have it. Then I had to stop using it, so it seemed completely lost.

I’ve recently started trying to use it again, just a bit. Still not got it. It’s pretty much lost. And I’m likely to lose a tiny bit more soon (operation). So chances are it’ll feel like it’s lost forever, no matter how I try to use it.

Sue (aged 51 and a quarter)

A decent physio will identify areas of weakness and provide a muscle strengthening programme. Do the exercises regularly and you are likely to see some improvement and perhaps slow up progression.

hiya

i detest that expression. why? i done aerobics for nearly 30 years-i considered my self fit. i had one life changing attack in 2012 and no matter how much i wanted to move whatever limb-i couldnt. regular carers and a powerchair enable me to have some sort of life. i have to believe that the aerobic years played some part in giving me stregth but for my mental state i cant and wont go do the ‘what if’ route. but ms takes what it wants and if you are lucky you get some ability back-or you are unlucky like me. any repetitive exercise beforehand i still believe must be beneficial but if the attack is so severe then there is a real chance of no recovery. i think my experience is so rare that even the ms society couldnt advise/support me-it was local stroke charity that helped me. it was/is def ms! but the stroke lot understood at least some of the issues i was trying to cope with-and still am although i dont have their input anymore.

newbies-this is rare so dont worry-you will be luckier.

ellie

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Oh Ellie, I totally get where you’re coming from.

It’s like saying ‘you can’t walk, it’s because you didn’t do the physiotherapy exercises’, or ‘your core is scr*wed, that’s your fault’.

We make ourselves feel bad enough just naturally, there’s no need to add a phrase like that to make us feel even more guilty.

Sue x

We are going to pick up a mobility scooter for my wife on Saturday. Her mobility is poor and she walks using a crutch whenever she leaves the house.She has kind of had the attitude of trying to struggle on walking whilst she can(our daughter is completely wc dependant since birth so i think makes her more determined to avoid it as long as poss) but i have felt for a long time this is limiting her life so much due to the fact she can only manage such short distances and despite her denials its obvious to see how much pain it causes her to go more than about 50mtrs.She has recently admitted its getting harder and that she needs a scooter now .

Maybe when she gets to see the Ms physio things will improve but for now i am really looking forward to being able to go for a stroll to walk the dog together. The dog is 15 and got her own mobility probs so will probably want to go on the scoot after a while anyway!

Thank you everyone for your answers. To summarise, that basically, I need to find the right help (that isn’t always forthcoming or obvious), that excersizing helps and slows progression but unfortunately it comes to us all. Is that basically all of that in a nutshell?

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hiya

no-it doesnt come to us all. forgetting re ms just life a healthy balanced life when/if possible. worrying and fretting just helps u miss living NOW. i am not being flippant-far from it! we are all stronger than we think and deal with any issues when they arise-however bad/life changing they seem.

ellie

I think we can continue to try to do what we can, depending on personal circumstances, type, level and duration of our disability.

But often it is just not possible to relearn to walk once you’ve lost that ability.

I had a disastrous relapse in 2012. I was essentially paralysed from the waist down. IV steroids helped kick start recovery and I did indeed regain some small ability. But when I first saw my rehab doctor, he said ‘you’ll be able to walk again’, later he said ‘you should be able to walk around the house, maybe about 50% of the time’. Later still, on discharge from the rehab unit, he changed the prognosis to ‘you may be able to walk a bit with walking aids’. I tried really hard to walk, but it’s been up and down for the last 6 years. I now accept that the amount of walking I can do is extremely limited. I still persevere, but it’s a few metres a few times a day (on a good day) with the help of FES and a Troja walker. Basically I am a 100% wheelchair user. And have had to accept that.

And it’s often better to accept walking aids, scooters, wheelchairs, walkers, crutches, whatever enables you to be mobile, than to be so determined to avoid aids that it makes you more disabled.

Simon, I would never say stop trying, but be realistic about what gains you can make. (And btw, CD made a suggestion of using a wheelchair as a walker - don’t try this, it’s impossible unless you can persuade someone else to sit in the ‘chair. There isn’t sufficient weight at the front of an empty wheelchair to lean on the handles.) But by all means, try and improve your core and leg strength. Get a good quality walker with very good brakes - Troja make excellent well balanced walkers. These often have seats that you might be able to use (I’ve never been stable enough to turn the walker round and sit without brakes on. Use whatever you need to make your legs do the right thing.

And if you’ve tried and discovered that you are unable to get out of the wheelchair, then you may still have improved other aspects of your body. For example strengthening ones core helps with bladder and bowel function. Exercise is good for the heart, the circulation, the brain even.

All the very best of luck to you.

Sue