I’ve had MS for around 20 years and have laws had difficulty walking but recently my mobility hs worsened. My legs feel like the are going to give way constantly walking inside the home is hard but going outside is not possible. My question is for anyone who has progressed to a wheelchair, how did your mobility change, were there any symptoms or was it just a worsening in your mobility
My mobility is slowly getting worse i manage to get round the house with a 3 wheeled trolley and also out to the car with it but that’s my limit anywhere else I use a wheelchair or I have a mobility scooter if we are going for a longer trip out .
For me it was a matter of accepting that was easier for myself and my husband just to except I could no longer walk without help anymore, still breaks my heart every day and just try and keep myself as mobile as can for as long as possible.
Take care .Katy
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Hi Red, I went into a wheelchair within 2 years of starting with mobility problems, part time and have been a full time wheelie for around 15 years.
Many folk at the crossroads of shall I/shant I? find it such an understandably frightening time.
Of course it is imperative to keep yourself mobile as long as possible.
I had many, many falls, kept trying as long as I could, but even weight bearing became impossible, so I had to bite the bullet.
Not long after that came the transferring issue…my legs gave way too often and injury was inevitable. So I then had hoists fitted in my house.
BUT and this is a BIG but…
no-one told me about FES…a system of keeping you mobile, have you tried it? I know a lot of users who have kept themselves out of a wheelchair. Or they have combined FES with wheelchair use.
The thing to remember is to keep safety at the forefront of your movements.
Being in a wheelchair isnt the end of your life. It is a way of continuing to enjoy going out, shopping, to concerts, on holiday etc. And you wont come home earlier than you`d like, or feeling knackered.
If you become bed/house bound, a wheelchair would change all that. Many places are now wheelchair accessible. If they`re not, then there is always somewhere else to go.
I love my wheels…they`ve given me so much.
pollsx
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My walking got gradually worse and worse, I went from a stick outside to a crutch outside, to a pair of crutches inside, then a walker inside. Then a wheelchair outside. Eventually a big fat relapse meant wheelchair indoors and out.
Poll is right about FES. If the reason for your worsening mobility is drop foot, it could help. Ask a physiotherapist for information. But if it’s not related to drop foot, but is just a gradual worsening of everything, then a chair should help you out of doors even if you’re not at the wheelchair indoors stage yet.
You should be able to get a referral to your local Wheelchair Services. They will assess your needs and give you a chair depending on what you need. A referral could come from physiotherapy, or a neurologist or (I assume) your GP.
As for waiting times, you might find you need a chair outside more quickly than they can get you one. You could try your local Red Cross, they often have wheelchairs for hire.
In terms of giving me back some independence, the wheelchair hasn’t exactly done that since I use a manual chair and I’m not strong enough to wheel myself outside (and am stubbornly refusing an electric wheelchair) but then I am very lucky in that I have a pretty wonderful OH who is retired and will take me anywhere I want to go. Or even places I don’t much want to go but he thinks will do me good!! But I couldn’t be without it indoors, so it has made a big difference to what I’m capable of within the house.
Sue
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I was fairly mobile for 10 years then graduated to 1 stick, then 2 and slowly the amount I walked in time and distance got less and less.
Very frustrating, so in he end, bit the bullet and asked for referral to wheelchair services. At first I had a manual, but lack of upper body strength meant I was relying on family or a carer to push me. Or I went door to door in a taxi. Or not at all.
While at a mobility roadshow, I saw a guy with MS who had what I npw, a Benoit Lightdrive. Its an add on motor and soon I could go further and faster than i had in 10 years!
Do you use the local Shopmobility service? Try a few there.
BTW the pain in my knees improved when I was no longer trying to walk. The weight was off them!
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Thanks for the replies I am going to speak to my physio and MS nurse as I think the time has come
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Good on you Katy. I’m going through this exact process.
Trying to keep as mobile as possible, until I find the way forward.
The 4mph mobility scooter, from a car, is a very tough pill to swallow.
Yet all those who have never had a car licence, will never understand. The free bus pass is useless for out of hours & destination services. It’s bad enough not being able to get active in the great outdoors. Never mind, the taunting from the clueless.
I’ve got sticks for when needed & a folding wheelchair, with detachable wheels for the boot. And when the day comes, that I get a mobility scooter. I will have a van, with a ramp & winch. Anything to get me away, from the puzzled busy bodies.
Even brought a folding mountain bike, with detachable wheels. For when discovering a long winding flat coastal road. There’s also plans for a bike wheel, electric motor & getting a kayak, with a strap on outboard. Boatability! Nothing should ever stop a person from doing what they usually & want to do. Keeping active is key, to keeping motivated. It pumps the blood & improves health. It gives a greater chance of a better quality of life. Which makes people far happier.
Life goes on…
Terry
Good on you Polls. My FES is used in the wet room, at present. For showering.
It’s great gadget for sitting & standing when having a good scrub. That alone is worth it.
I’ve tested a few wheelies. Some even do wheelies, at brake neck speeds. There’s even X gamers, doing wheel chair jumps & exiting planes. Like that’s what we do every day.
The unaided walk in a park, will always be missed. The Ducks don’t have wheelchairs. I want their wings now. At least they can fly away when needed. That’s where the human carrying drone will come in handy. They even exist & I want one!
Terry
Hang in there Red. Use it or lose it, is my motto.
It’s a very speedy decline, when we rely on anything or anyone.
I’ve never been offered a physio. Keeping fit, has always been a past time. Be it by diet or exercise. Keeping mentally alert is handy too. Especially for avoiding the situations no body want’s to be in.
Blame the paper trail creators. The more paperwork the better, for their system.
Wheel chairs are an awesome invention though. I wonder who has the patent for them. It can’t be Magneto. Only the Internet can read emails & 3D map what they want you to do.
Best regards…
Terry
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Hi Red1
I’ve progressed from no stick to stick, wheelchair and scooter over about 5 years. Katy is right I progressed to make my life easier. Enabling me to do things I couldn’t do without help.
Wheelchair is NHS,got a referral from MS nurse. Made to measure, got rubberised hand wheels ( don’t know proper name is fort the wheels you push with your hands).
Means I can be pushed somewhere like a museum then can self propel wherever I want to go. Has given me a bit of freedom.
Even flew solo with my chair down to a party. Assistance at the airport was fantastic. Couldn’t have done it without my chair.
I went to a big party in mine recently, wouldn’t have been able to go if I had to stand. Cup attachment for my glass of prosecco.
Gave me confidence, presume friends were shocked but didn’t show it.
Even if you get one you only need to use it when you feel comfortable using it.
Jen xx
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Hi
I had increasingly severe relapses, and never made a full recovery from them. Like everyone else I went from nothing to one stick to crutches to walking frame to wheelchair, within 18 months of being diagnosed. I know people say use it or lose it, but I personally find that a bit simplistic. Yes, practising with our body can help keep it strong. But then, I didn’t start needing a chair because I hadn’t been using my legs; I had no choice in the matter. I could have stubbornly refused to use a wheelchair & just hobble around with the frame. But that would have meant having more falls. It would be so limiting, and potentially made things worse by being so tiring. Using a chair meant, for example, I could quickly & easily get to the toilet. It’s given me so much more independence. I can take myself to the shop or into town, which I could never have done otherwise.
The first chair I got was a standard NHS manual tank, sorry, chair. Now, four chairs later, I’ve got a super light, super comfortable rigid manual chair which I love, so much faster than the NHS ones I had. I always feel self conscious when I’m out in the chair. But, and this might sound a bit weird, having a rigid chair now I feel like I’m a ‘professional’ disabled person, and more confident than when I was in the folding chairs (another person I know said the same thing when she got her rigid chair)
Good luck with it.
Dan
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About 10 years ago, I started using a walking stick. Instantly, there was an improvement because the stick saved me when I would have the occasional bad step. About 5 years ago, I needed more help, so I started to use crutches. Again, there was the instant improvement as the crutches saved me from the now much more frequent bad steps. 18 months ago, after a bad attack, I had to start using a wheelchair. Very reluctant at first but again it helped me so much. My bladder was going nuts at this time and “sprinting” to the loo using 2 crutches resulted in me going over the handlebars a few times resulting in injured shoulders, arms, legs and knees. Using the wheelchair meant a lot less accidents- both bladder and non bladder.
i still try and walk as much as I can, which these days isn’t too far but at least I still try.
foot drop is the main cause of most of my mobility issues. I’ve tried the FES a few times but sadly it did nothing for me. I have used a SAFO ( a lightweight, silicone brace) which helps me tremendously.
In all of this, think of what your worst days are like and what can you use to best deal with the issues that bad days give you, whether it be a wheelchair, scooter, walker, crutches or stick. On good days, try and use as little help as possible.
Hope this makes sense.
derek
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i can totally relate to this, my decline in mobility was very rapid, i went from being able to play badminton to fizzy legs and onto complete numbness in a matter of a few months, i can move around at home from room to room with the aid of a frame but it’s painfully slow and very dangerous, because i cant feel my legs the risk of falling is very high, so using my chair is so much quicker and a lot safer, my first chair was also an NHS loan chair just to get me moving around, i was grateful to have it but it was awful, very heavy and clunky and very hard work to propel up an incline, i only used it for a few weeks before buying a TiLite Aero Z lightweight rigid chair which made a huge difference, its very manoeuvrable and easy to propel along and inclines are no longer a problem, it does’nt feel like a piece of medical equipment and i have much more self confidence when i’m out in public, i bought it secondhand and i was lucky that it’s a good fit, but i will be having a professional fit for a new chair at some point this year, i will probably either stick with TiLite and go for a newer model TR3 or ZR series or maybe a Quickie Helium ?
Jemma
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I’ve also reached wheelchair stage now and am happily accepting. I was diagnosed 4 months ago and two major attacks have set me back from long distance running to wheelchair in house and outside.
Sure it sucks but the energy saved from avoiding falls, taking daily walks, etc.is absolutely worth it.
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