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When is it time to move into a wheelchair?

I have tried to stay on my feet my old doctor before she left always said use your legs or loose your legs, so i have kept on them as much as i can.

However, now like yesterday i took dog to vet with my care worker a 2 minute drive she drove. I took my tri wheeler so i could walk into the vets as i thought it would be good exercise.

I woke up in the worse leg pains, spasms pins and needles and first time for a long time the worse pain in one hip it woke me up. I struggled to go from the bed to my commode. I could barely walk. Every time now i go out and try to walk even for a short distance i end up in this state.

I am getting beyond depressed. The pain is bad too nerve pain which my 2mg diazepam isnt even touching. Once i wake up i struggle to get back to sleep.

I keep looking at my little electric wheelchair but my guts is telling me no don’t do it. But not sure i have the strength anymore to keep doing this. My PPMS has been so much worse since i lost my husband and moved which is all understandable, but i thought now i am in better place i would show improvement but lately i feel worse and worse.

I think i will ring my nurse today if she is there and have a word. Sorry to load you with this question i know you all have your own things to deal with. I just having such a bad time of it, and i am really trying my hardest to deal with it. I have to see the blood nurse tomorrow as they said my last bloods were borderline on my sodium (which they have been on and off for years), and have to see the optician again as i suddenly developed in growing eyelashes which are horrific worse then the pain of ON. so dreading going out, but have decided i am taking Betsy my wheelchair i am not strong enough to do two appointments on my pins.

If you have migrated to a chair what made you decide would you mind answering me please? xxxxxxx

Aw CC. You’re going through the mill a bit lately, aren’t you? I used to use a 3 wheeler walker indoors until recently. My ot saw me using it and said it wasn’t suitable now. I’ve been given a rollator now and it’s far sturdier. The seat is handy too. I have to use the motorised chair for outdoors. We have a drop down ramp in the car. I don’t drive in. Too scary. Husband bundles me into passenger seat and he steers the chair up the ramp by leaning over the chair. These last few months have really been a struggle even trying to shuffle indoors. Mri last week shows I’ve a Miniscal tear in my knee joint. The pain when weight bearing is excruciating. Sometimes I just can’t manage to shuffle from table to chair. I’ve had to use the manual wheelchair that’s indoors. It’s difficult to manoeuvre as it’s a small cottage. The relief was great. I too am scared of relying on it. I’m scared this ppms is progressing further. I’ll resist as long as possible. It’s not about vanity. It’s being scared. But I will use the chair if I have too. Whatever makes life a little easier eh? Give yourself a break cc. Xxx

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CC, I’m sorry to hear about your struggles and I’m not going to tell you what to do, I’m just going to tell you my story. I’ve been a permanent wheelchair-user, since 2000, and I wished that I’d have decided to embrace it sooner. When I started using one, I had more energy to do other things, I could get about without the risk of falling, I could (with the help of a lap-tray) make myself a cup of tea and transport it through to the living room, and the list goes on - it gave me more independence. To try and give my leg-muscles something to do, I do a lot of stretching and I also ensure that I keep standing (whilst holding on to something!) in order to try and help my legs from seizing up.

This is just me and what works for me but, I now embrace my 'chair and look upon it as my friend that’s helping me get through life. My body is in trouble and I’m just trying to help it - he says!

Good luck and take care.

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Hello CC

I do feel for you. It’s really unfair all the losses you’ve had since the sad loss of your dearest hubby.

And losing the ability to walk independently must hurt enormously.

I’ve been on the RR/SP/PR side of MS rather than the PPMS. But after the nastiest relapse in January 2012, I ended up in hospital as I was unable to feel or move any part of my body below the waist. I spent 2.5 weeks in hospital and then 6 weeks in a rehab unit. With steroids, I managed to relearn to walk a few metres using a rollator. But in the 7 years since, I’ve never managed to walk more than a few metres. And that distance from time to time becomes nil. So most of the time in and out of the house I use a wheelchair.

I didn’t have the difficult decision about whether or not to use a ‘chair, the decision was taken from me. So I now spend almost all of my life using the wheelchair. Right now I’m sat on my settee with my feet on the seat of the ‘chair. I can do nothing useful unless I’m in the chair, and basically can only walk about 5-10 metres a couple of times a day using FES or an orthotic to lift my right foot, plus a super sturdy Topro walker. Even so, I’ve done real damage to my arms and shoulders, I lean far too heavily on the walker. I just stick to doing my tiny bit of walking for that whole ‘use it or lose it’ thing. Basically I’ve lost the battle already, I’m just pretending I haven’t!!

If using a wheelchair makes things easier for you, then use it. You’d be the first one to tell another person that it’s not giving in to use a stick / crutches / a walker / a wheelchair. Sometimes using a mobility aid enables us to do more than without it.

Using a chair isn’t giving in or giving up. Sometimes it’s the stronger decision to use the aid rather than struggle without it.

Sue x

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Sue,

Can I ask in what way you’ve damaged your arms and shoulders? I’m more or less the same as you and I know I lean too heavily on my walker. It’s definitely my arms that keep me on my feet!

I totally agree with your advice to CC too.

Sarah x

Hi Sarah

Two different types of injury, there’s the upper arm muscles that are just knackered all the time. And apparently the rotator cuffs are injured too. (The bloody things you learn about over time!) These are something to do with the shoulders, if I dig my fingers into my opposite shoulder, I can feel it hurts really deep inside. Sometimes it’s really small movements that hurt like hell.

So I’ve been using heat pads and Voltarol and doing exercises. All together they do help, but then I go and hurt the bloody things again. I’ve been talking to my physio and doing some exercises that she recommends (but generally she comes and drinks tea and chats!! Lovely person, doesn’t do much in the way of physio, or rather not with me anyway, cos my body is so knackered!)

Really the only long term cure is to stop doing what’s causing the damage. But if I do that, I’ll soon find that my stupid legs won’t do anything at all.

Vicious circle really.

Sue x

Hello CC.

All I can say is that since moving into a power chair, I have travelled well and increased my independence. I go to physio once a week to touch base with my legs.

Steve

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thanks everyone. weirdly enough i got up yesterday and decided to ride through the pain and there was hardly any, my hip pain had just disappeared. i took my dog out for her normal walk on my scooter. When i got home i managed to get hold of my MS nurse. she has said i am due an appointment anytime soon with the neurologist and wants me to talk to him about it. She also wants me to self refer for physio on my legs. which i am going to do. Also said if i have to use my electric wheelchair then use it basically, but advises i must get sorted with physio as well. she said the more i try to push the worse it can make me. so just do what i have too to make my life more comfortable which is more or less what all you have said. I just want to thank ALL OF YOU for taking the time to advise me and help me. It really helped. I really appreciate the time you have taken to do that, as i know you are all struggling in your own rights. again THANK YOU, i will let you know how i get on. If and when i sell my house finally i am going to buy myself a decent rise chair but the trouble is my flat isnt the biggest for getting around in a wheelchair, but i will certainly be using my electric wheelchair for all outside visits from now on. I have nurse this morning for bloods then opticiens as it looks like i have suddenly developed ingrowing eyelashes, it will be second time in about six weeks they have flared and caused me awful pain. Jeez its always something isnt it. Take care all of you. xxxxxxxxxxx

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If you have migrated to a chair what made you decide would you mind answering me please? xxxxxxx

Well, the amount I could walk, with sticks, was getting less and less - both in time and distance. I’d go to the town - on the bus - two or three shops and I was whacked! Frustrating as hell when you want to get things done. Could not walk around Tesco’s, again wiped me out. And sick of falls.

At first I only needed it for a “big day”. going round a shopping centre, a museum, a convention. Then got a referral to wheelchair services and a manual. You say you already have a wheelchair? Once I had a motor, I could go further than I had in years! Its okay for drs to say use it or lose it - mine was the same. however pain in my knees improved because I was not standing!! I’d say “Hello Betsy, fancy a spin?”

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The “use it or lose it” concept is something I really try to stick too, but not so sure of it’s benefit.

I walk everywhere I can with or without a stick, but if it’s without the stick I have to have my wife at my side, just for some physical support but also I find walking next to someone and holding on sort of makes my brain tell my legs to match that person.

That probably sounds a load of tripe but thats the only way I can explain it.

I cant walk very far with or without help/stick, my legs just get heavier and more clumsy with each step to the point where it’s what I call my “crash point”, basically shuffling along with no leg lift or coordination, an accident just waiting to happen. At this point I have to stop and sit it out, which could be hours.

Getting back to the “use it or lose” thing, I’ve read and been told by physio’s, GP’s, Consultants ect ect that exercise is critical for us with MS as it keeps the nerve pathways “flowing” whilst also building muscle strength and helping with flexibility, obviously this all sounds like it makes sense, but if I’m honest I feel far worse physically after just 10 minutes on a cross trainer or exercise bike than if I dont do any exercise at all.

10 minutes exercise can sometimes wipe me out for the rest of the day.

So at what point does this “critical” exercise become a benefit in "using it or losing it " ?

I dont feel I’m benefiting from exercise, in fact I sometimes think is it doing more harm ?

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I feel same jactac.If i exercise i feel really bad and i am wiped out for ages after.walking is a real problem for ma and has been for a long time.I walk round the house and garden but that’s all i can manage but i am made to feel as though i should push myself more.

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Yep totally know where your coming from.

That feeling of having to push yourself is probably a good thing, as mentally your refusing to give in to this sh*tty illness.

But physically pushing oneself is just so hard that it makes me wonder is it all worth it ?

I can honestly say I feel dreadful straight after doing a short 10 minute casual stint on the cross trainer, and I don’t really feel that any long term benefits are coming from doing this every day ?

Like you jaydee my walking is confined to very short distances, and if I have pushed myself too hard even those short distances are wiped out.

My mobility/balance/ coordination have all got worse over the last 18 months, not suddenly, but a steady gradual decline, this is why I’m hoping that trying to keep to a mini exercise plan might just keep my current mobility at the level it is now, I certainly don’t think the exercise will improve it though, but we can only hope eh !