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When do you become a full time wheelie?

Hi

Outside I use a wheelchair Inside I struggle with my rollator. Sometimes when coming inside, from outside, just to get something I use my chair. It is so nice not to have to struggle. So when do you become a full time wheelie? My drs & Ms nurse say walk as long as possible.

When you do become a full time wheelie how do you keep the strength in your legs to enable you to transfer etc.

Many thanks

Sue

the answer to that is how long is a piece of string, I have to use a scooter outside, and a stick in the house, the stick around the house stops me from falling,

I will be walking around the house for as long as I can,

I’ve had MS since at least 1993 so am doing quite well not needing my scooter or wheelchair 24/7, I think it helps that I have a possitive outlook to it as when I was first dx in 2006 (was misdiagnossed in 1993) I went downhill very quickly with the shock of it all, so for me its about not stressing about it and changing my way of thinking and doing things

where some with agressive MS might be in wheelchair sooner than others, I suppose it depends on which MS you have, plus whether you are on treatment of not ,

Personally I’m on copaxone injection everyday

Al x

I have had MS 20 years,and i still walk about the house,i hate the idea of having to use a w/c all the time,i hope i never have to,my balance is really bad, and there are times i cant stand and i cant walk more than a few steps ,i use my sooter when out and about, only just got it a few months ago, (pride held me back) it has given me back a bit of independance,and i wish i had got it years ago,instread of being virtually housebound, i also do pilates excercises to help my core strength and go on my excercise bike for 4 minutes twice a day, i am sure that helps me keep being able to potter about the house.

I am so thankfull for being able to get about,even if its limited, i still can, and realise that some have to use a w/c full time,i think its down to how quickly the ms progresses,for some its much quicker than others.

After 25 yrs of being a carer I have seen the huge difference it makes to peoples health and wellbeing if they can weightbear,even if it is with the use of a stand aid.

With the ability to stand with an aid or independantly it does enable use of the toilet etc without hoisting.It also means going out for the day etc is easier if you do need the loo etc.

People at my home before becoming full time wheelies are encouraged to stand at a table etc and walk on the spot with the table as support .Physios are very good at giving you individualised exercises to do in order help maintain leg strength and avoid contractures.

Have OT done an assessment so that you have got aids and adaptations that will ensure everyday tasks arent such a struggle so you arent too worn out? There is a huge array of equipment and aids that could help make life easier at that might enable you to stay on your feet a bit longer.

Only you will know when enough is enough but I would encourage you to get OT and physio involved to help you stay able to stand/transfer as long as possible.

I wish you well.

Pip

Hi Sue

I have decided to make this decision by not actually making it! I know that sounds daft so let me explain. If want to get from A to B I do it by the easiest/safest means possible. I have a variety of mobility aids: scooter, indoor wheelchair, outdoor wheelchair, rollator, sticks and crutches and use whichever one seems appropriate.

My outside wheelchair is a recent acquisition but the safest for outside so I use it or my scooter almost exclusively. Inside I furniture surf or use my sticks because it is easier than using the wheelchair. Even though my bungalow is adapted and it is easier on my fatigue, using a wheelchair all the time is a struggle. I hurt my back a few weeks ago and had no choice but to use the chair 24/7 and discovered that it was hard work reaching for things, getting to the loo etc. I wish I could say that my aims for keeping walking were lofty ones but it’s all to do with what’s easiest.

jane