scamphere 02/03/18
Last reply 4 months ago
Wheelchairs

Hi all, I’m new so I don’t know how this works yet. So bear with me. I will start by asking 2 questions. For those in a wheelchair what were you legs doing, and not doing, to cause you to have to be in a wheelchair? Pain? Weakness? Balance? What? And has anyone ever had a leg just give way without warning? Mine happens all the time.

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stumbler
4 months ago

Hi, @scamphere and welcome. You’re working the Forum well. 😉

I’m an occasional wheelchair user. I intend to keep my legs going as long as possible, but they do suffer from weakness. Not physically, just my brain thinks otherwise.

Balance is also a problem. Balance relies on accurate sensory feedback from our lower limbs, hence that problem.

And, yes, I do experience my knees collapsing under me. That’s annoying as it’s unexpected when it happens.

So, you’re not alone.


lorag
4 months ago

I don’t use wheelchair everyday just when I know I have to walk long distance. I use it cause I have weakness and balance foot drop too.

I do physio to keep my legs going.


vixen
4 months ago

Hello there. I am fortunately relatively able at this stage. But my understanding is that people often use wheelchairs not so much because they require it, but because it enhances quality of experience and prevents overdoing things. For example, you could go to a concert and really struggle to stand for two hours, or you could take that discomfort away by using a chair and adapted area so you can really enjoy the concert. Just a thought!


wrinkly
4 months ago

Hello, I use a wheelchair all the time now when I’m out and about.
At first, I didn’t want to use one. The thought of sitting in one and being pushed around filled me with dread.
People would see me! See I’m disabled!! That wasn’t me.
But we were going on holiday, and my wife (the sensible one) gently suggested it would be easier for me to get around while we were away. So I very reluctantly gave in and brought one.
Up until that point, I had struggled, walking using a walking stick, not getting very far. I was always scared that I might not have the energy to get back to where I started.
So I used it on holiday and it really helped.
I have to admit it’s much easier now. I’m able to get out – true, with someone pushing – and go as far as I like. I enjoy going out now.
The first time using the chair – physiologically for me – was very difficult, but I got used to it. And apart from becoming invisible when using it, or so it seems, no one talks to you,I would not want to be without it.


grandma
4 months ago

Hi Scampere and welcome. I was given a wheelchair 25 years ago which went rusty in the garage, but have just been given an electric one by NHS cos I am on my own, but council still haven’t done my ramp (don’t get old and disabled in Stoke-on-Trent) have been waiting over a year, am virtual prisoner in my own home. Cest la Vie😍


markp
4 months ago

Hi @scamphere

My ability/confidence with a walking stick could just no longer be relied on.

So, I use a rollator now that steadys my balance and enables me to walk the streets with a renewed confidence, as @stumbler said we’ve got to keep them legs pumping!

I do use a wheelchair for when I have to go further then I know I can manage.

The collapsing knee at inopportune times is a bugger I bear too!


mmhhpp
4 months ago

Weakness everywhere legs freezing unable to walk with Rollator stuck crying extreamelly difficult to walk . I had enough !
I got a scooter best thing ever. Wheelchair difficult when upper body weak!


mmhhpp
4 months ago

scamphere
4 months ago

I have late onset MS. It’s a carryover from my having chronic Epstein Barr syndrome most of my life (long story). I started showing symptoms at around 60. I’m now 70. I don’t envy anyone getting this when they were younger. Mine is constant and slowly getting worse, not the relapsing type. Anyway I think that’s what’s going on. I hear there isn’t a test for this kind so I haven’t been to a doc for it. Can’t take meds anyway … too allergic. (Another long story … hey, I’m old, LOL). I won’t drag out my list of symptoms, just my legs for now. I used to walk 3 miles a day. Since this began … on good days I can only muster three fourths of a half a mile very slow, with a walking stick. On bad days I can barely make it from the sofa to the kitchen. I have a lot of weakness, but also pain mostly in my left one … which by the way has the most muscle. Some days the sharp pain stops me from bearing down on it. They get really stiff upon standing after sitting or laying a while too. Then it eases up once I use it a while. I also get horrible pains in my gluteus medius muscle and I can hardly use my leg. When I don’t have pain … this same leg gives out without pain or warning. I’ve already taken about 30 spills in the past few months. And my gait is really weird too. My balance is horrible as well. I try not to use a cane, but do at times. I also use two canes at times, and also the rollator (rolling walker). The wheelchair looms in the background begging for me to use it. I don’t want to. I want to keep my legs going. I was just wondering if ya’ll have muscle and tendon pains along with the weakness. I will mention other symptoms later.


scamphere
4 months ago

Oh yeah and thank you all so much for your comments and I’m sorry you’re going through this. Dang brain doesn’t always work right either. 🙁


nrl321
4 months ago

@scamphere for me it was that I had 3 big falls requiring stitches so my wife said that’s it we are getting a chair and I don’t think anything of it now it has made me have more energy to enjoy outings with my young family.
The falls were mostly catching an uneven surface with foot drop and my feet not quick enough to move back under myself or my feet just stayed where they were and I fell like a big tree (TIMBER!)
@wrinkly I know what you mean by invisible but! I have had the most weird and wonderful interactions with random people while in my chair?


stumbler
4 months ago

@scamphere , are you able to arrange a neuro-physio assessment?

You’ve probably adopted some bad habits, which need to be identified and addressed.


wrinkly
4 months ago

You’re right @nrl123, my wife and I met and become friendly with a very nice couple when we were on our last holiday.
We started chatting about the disable toilets – or lack of them – on the cruise ship we were on!


reddivine
4 months ago

I’ve posted this story elsewhere, but to answer your post. Mt legs got less and less reliable. Falling in the garden when no ones there and you can’t get up is bad enough. Worse when in public.
I had sticks but amount i could walk got less, in time and distance. Frustrated! For big days out, like a museum or exhibition I needed to hire a wheelchair. Finally on hols in Rhodes 2012 we hired one and convinced after that, I got refered to wheelchair services.

They didn’t have quite what we were wanting (we needed back brakes) so they gave a voucher for part of the cost. A good wheelchair is better than a cheap wheelchair, I will say that.
Rock on a few years and I got a Benoit Lightdrive add on motor – still rare enough that we get stopped and have the sales pitch off pat now!
Following a small inheritence, I have upped the game and got a Trekinetic – off roader…..brill in this crap weather, where I would usually be housebound.


billkittens
4 months ago

@scamphere

Foot drop, ataxia, self conscious with the way I appeared

Led to many falls had, incl broken bones and hospital stays

It came to a point of weighing risk

My poor personal experience of anti-spasticity
drugs was the clincher in truth

And being reliant on a wheelchair has its many positives as mentioned by others

All the best with it


scamphere
4 months ago

Thank you all for your replies. I don’t know how to address them individually once there are several posts. Please keep telling me how your legs felt that made you use a wheelchair. Pain, weakness, not functioning right, giving out, numbness, all the above … or add your symptom(s)?


stumbler
4 months ago

@scamphere , it’s more a case of when you feel it’s right to have a wheelchair available for you.

Reasons to use a wheelchair. Primarily to mitigate the risk of serious injury if I didn’t use one! Need I go on?


bullman
4 months ago

@scamphere
This is probably greedy but I have 3 wheelchairs. I have an indoor chair for narrow doorways when my legs/back give way. I try to use my stroller to keep my legs going.
I use an NHS chair, that I keep in my car, for when outdoors for getting around. I also have a fold up chair to fit in other peoples cars when out with them and their car is too small for my usual chair.

See, I’m greedy. 😉


grandma
4 months ago

Bullman you are not greedy, just have all the bases covered. I have just received NHS electric wheelchair which I can’t get out of front door until council do concrete ramp, I do use my own bought one if anyone else is around to bring it back in the house for me, other than that I uses scooter I had to buy myself a year ago cos the arms had got so weak I couldn’t use elbow crutches any more, anyone want a spare pair? We all do what we have to do, but be carefu. In our city (Stoke) big mining area so pavements very uneven I fell out of electric chair in town a couple of weeks ago, Joe public very helpful and concerned, all said council should do something, but they have no money and we’re very low priority. Keep doing everything and everything to keep going out and keep us visible we don’t want to become the forgotten people😍Jill

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