@JasFromTas

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JasFromTas

Wheelchair....?

Ok, big breath… so… I am thinking about getting a wheelchair. I hate the idea – I have no intention of being parked in the corner of a room under a crocheted blanked sipping luke-warm tea and eating egg sandwiches, but I am sick of not having a life. I have now been using crutches for 5 months. My walking improvement has pretty much stabilised, but I am sick of having both hands strapped to the sticks, taking forever to get from A to B, and it wares me out. My brain is truly and deeply fried at the end of the day, just from the effort of trying to get my legs to go somewhere in the vicinity of where I want them to go (with variable amounts of success). Work is a nightmare. Walking, walking, walking. My friends have stopped inviting me out (sick of having me say ‘too hard’ so many times), and I haven’t gone shopping since February (as a 28 year old girl, this is killing me). Take-away coffees are out (not enough hands) as is anywhere that involves distances greater than 500m from a car park, any time constraint, the dark (particularly perilous with my feet) or crowds. So basically anywhere fun that a young person would want to go. The logical part of me knows that a wheelchair for some of the time may be a logical idea… But then the other part of me kicks in and screams “RUN! RUN! As fast as you can!!!” (a difficult task for someone on bilateral mobility aids…) What have other people done? What has been the tipping point? I am only 5 months post relapse (now stable) but so over not having a life. How soon is too soon? Is it too soon? Please someone tell me to pull my head in and it’s all too soon to even start think about! :-( Jas

Stumbler

@Stumbler

Jas, you have the right mindset to consider this acquisition. It won't be a permanent feature for you, it will be a means to an end, for when it suits you. That I feel is the right attitude. My wheels live in the garage. They come out occasionally, that's all. They're there for when I need them, like my son's wedding next week - I wouldn't be able to manage the day on my sticks. So, a wheelchair is an option, for when required, not a permanent fixture. Does that help, jas?

JasFromTas

@JasFromTas

I am not sure it does John, or of what exactly I am scared of (...giving in...?) I know it is only for some of the time. But that's what those physios (deceitful liars the lot of them), said when I started with crutches. :-( How long did it take you to use a wheelchair? Where were you at mobility wise? Did you use it at work? Congrats on your son getting married too! That is way cool! Xx

Stumbler

@Stumbler

The wheelchair gives me additional mobility, as my range falls within 50 metres these days. So, if I need to go further, my wheelchair allows me to do it, whilst maintaining my independence. So, do concentrate on the improvements that it can make to your life. I got my wheelchair back in 2011-ish, so I could take it on holiday with me. I'd stopped working 5 years prior, when I only had one stick to my name. :???:

lorag

@lorag

I decided to buy a wheelchair 4years ago. Mainly for when I need to walk long distance. I now have it in my car boot because I seem to go places that I think I'm ok with walker or crutches and i'am not. It was a huge step for me but I just got it and it has been a life saver. It takes time getting used to accepting you need to use one but it's for best and u look better in a chair than struggling to walk with a stick.

Cazzzzzy

@Cazzzzzy

I know it's a shitty thing to have to deal with, idea of having a wheelchair can be soul destroying... Once you are out there though that will be when you just appreciate being out there so much more... Now when I'm out on my scooter or using a chair I don't even think about it any more and just get on with it... It's like a new pair of legs again and so much easier than sticks! Good luck :) xxx

Graham100

@Graham100

Yes I agree, I got one because the airport walking was just to much, and if you get assistance they don't walk you round shops an bars, now iv got it, it comes in handy, we take just in case, don't have to be a fortune, mine was about £120/150ish. Collapsible light, perfect.

jman

@jman

I can only speak from the viewpoint of 'the other half' of an MSer. when I met RD's she was fairly mobile, and her mobility did reduce over a year, from going to 2 sticks to a wheelchair. @reddivine opted for a lightweight foldable wheelchair, good for taxis, and travel. We went on holiday:) However I was having trouble pushing. So RD managed to get a grant from the local MS society and National (I think,) to part pay for a powerpack, called the Benoit, which has made a MASSIVE difference for both of us. Not sure how things are in Aus, but there's usually help around somewhere. Research, explore, ask around, talk to other users.

cameron

@cameron

I've always seen this as the nightmare scenario (not quite sure why, but it's so), although I'm not at the stage of needing one yet. All the comments here are so sensible and reasonable, you can't argue with any of them. All I can add is that if it were me, I would not be going down that road without first researching to find a top-of-the-range physio with speciality/interest in gait (and of course, one that is neuro-specialist). I would go through the gamut of gait analysis and podiatry and hopefully be offered something other than the standard crutches. I'm saying this because I've had a two-track approach to my own walking problem: on the one hand, there's been the NHS route (i.e. 'it is what it is', 'this is what we give people' etc). Then my own finds: a physio/orthotist who works in a research project and was so up the minute that I got much better advice (and a better orthotic) - plus a neuro physio who said I could and should improve leg strength to avoid using an aid at all. From her I've had 'brain re-training' 'making neural pathways' and other neuro strategies to help mobilise the legs. I've also been shown catalogues of (e.g.) walkers and orthotic devices that I certainly hadn't been aware of. The world of rehab medicine is huge - particularly because of sports injuries and the latest US research. Reading your post, I'm wondering if you were told after the physio ended that there was nothing else that could improve you. That's certainly how I felt after my initial (long) relapse.... but the people I mention above soon convinced me that I needed ongoing therapy, in combination with an exercise and lifestyle regime. I know you are a health professional so maybe you know all this already but I just wanted to say: a really good/innovative therapist might just open a few doors that you didn't even know existed. Just my thoughts. xx

reens

@reens

Was never something I wanted to get either, being a 'curvy' girl I thought people would just assume I'm being lazy using a wheelchair. But that soon became something I didn't care about because getting a little of your independence back was so worth it. I got a light 11kg wheelchair and then bought a battery motor to help along steep hills etc wheelchair was £120 & the motor was £250, a lot but it was worth it.

reddivine

@reddivine

See the above from Jman.....well WITHOUT my wheelchair i'd struggle to get to chemists, or slimming worlds or town,.... I am not some saddo, drinking tea in a corner!!! NO WAY! i am cruising to church on a Sunday (further than i have walked in TEN YEARS). I am taking myself to M&S and sipping mochalatte! I am whizzing round the dance floor doing wheelchair dancing at MS Life. I have been to London, Brighton, Bristol, Birmingham and Manchester with it ON THE TRAIN.... And you know what? the boyfriend has to run to catch up!

noddy7

@noddy7

I need to get one too.... what a decision, they all seem too heavy,,,,,i don't drive anymore, so have to think of people putting it into vehicle a..good timing for this discussion...

jman

@jman

@noddy7 RESEARCH is the key, go to a showroom, try them out, get recommendations. @reddivine wanted a lightweight one for that very reason. Transport. It folds nicely, the feet are removable, and the battery motor comes apart in 3 easy pieces. The heaviest part of that is the drive or engine. @reens, at that price I'm curious what motor you got for £250? Oh and @reddivine is a bit curvy :) We like curvy

janep

@janep

:( so sorry @JasFromTas, such a horrible decision to be making. I can see both sides- on the one hand I'd be wanting to avoid it at all costs and @cameron's suggestion of exploring other options sounds well worth a shot if the whole idea is really feeling wrong for you but on the other hand, it sounds like the restrictions on your life that the crutches are causing are affecting your wellbeing far more than the MS itself and being able to get 'back out there' sounds like a real priority for you. Using up all your energy on the crutches and leaving nothing for you just seems wrong! Perhaps using the chair at work initially might help regain a bit more energy for yourself? I know it's difficult and the 'it's only temporary' argument is harder to believe when they said the same thing about the crutches, but the human mind is a very powerful thing and the boost you may get from getting your life back might have a knock-on effect on your physical health too? Thinking of you Jane xx

reens

@reens

@jman it's this one : http://www.ebay.co.uk/itm/RMA-Roma-Electric-Wheelchair-Powerpack-Motor-twin-wheel-with-reverse-power-pack-/251165561558?ssPageName=ADME:L:OU:GB:1120 It's to help my bf push along cause the roads where we live are quite steep, not one I can use ( although when he's being annoying I turn around & try to do it myself and don't get very far) :P

jman

@jman

Thats handy.. Saved for reference:D J

PAVO

@PAVO

Jas I got a wheelchair july last year it has made a huge difference to me I even started to look forward to getting it I have been back to places I had not been to for a long time unfortunately I now have no excuse for not going shopping. I still walk when I can I use a walking stick at work I have a desk job so I am not on my feet all day, plus side is I always have a seat in the pub. Everybody else was more upset than I was about getting the wheelchair they seem to think I would be wheelchair bound but I was determined I was not going to be I have taken it on holiday abroad which did worry me do not know why the wheelchair arrived in one piece no damage and had a great holiday going places I would not have attempted had I not had the wheelchair So I have no regrets about getting a wheelchair apart being used as a shopping trolly by my wife

Tabbycat

@Tabbycat

God I love this site! So many brilliant positive people out there, dealing with the limitations in away that does not limit them !! I am not at the wheel chair stage yet, but of course I think about it and what it will be like for my husband when I my walking gets impossible. Your positive comments give me hope! I also agree with the exercise and physio route, as I know we still have all the muscles that we ever had, we just need to find new ways to access them through nerves that are still healthy. Looks like the way to go is to try both routes together. Big hugs !

Jl0ates

@Jl0ates

I resisted a wheelchair for a long time. OT recommended one in the office as 2 sticks and a rucksck for carrying things was a tiring business. About a year ago I stopped work following a hot weather collapse that I never really bounced back from. It left me with koala sleep patterns (over 14 hours asleep in 24). I was managing without a wheelchair at home but I finally decided a chair would help me a great deal. Less chance of falling, less tiring, more able to get around both under my own self propelling steam and with an attendant. The chair, named Freda, due to the freedom it gave me was a big and long resisted step for me. No regrets. Plus you get buy one get one free tickets at events. There are some perks, and my bruised knees are recovering. Go for it. Nothing to be ashamed of. For me a good practical alternative to struggling on my feet. Good luck with your choice. There are no bad ones, only ones to move forward from.

reddivine

@reddivine

reens. Its a bit chunky. mine is basically a manual Karma Ergo with Benoit Light Dtrive powerpack, thats what saves the weight. JasfromTas.....in the UK, first step wd be to see Wheelchair services and see what they have and what they say. I dunno the system where you live but DON'T buy sight unseen.....go to a showroom or mobility roadshow or similar.......ask around, stop ppl in the streets (I did!) Hire one for a while and you'll soon see what you want, whats missing etc. heres some homework http://www.benoitsolutions.co.uk/powerpacks.html http://www.karmamobility.co.uk/category/33/ultralight-self-propelled-wheelchair Mines RED!

JasFromTas

@JasFromTas

Hi Peeps! Sorry for the lack of response, but really reading your comments has been great and I feel so supported with making a good decision. A decision which is right - for me. (had Internet accidentally disconnected, non-reply was non-intentional!) Seems most responses seem to be that the right time to get a chair is when NOT having one is more irritating then having one, and when you want to. @Cameron to address your concerns, yes, I have got lots of opinions. I do Physio (Neuro Physio) twice a week with the director of the Neuro Physiotherapy of Progressive Neurology in Victoria. So she has much much experience (I specialised in a Masters of Neurology (progressive Neuro focused) before getting MS, and she taught me parts of the rehab segment. Now i see her as a friend, privately). At the end of August I will change this to once a week and add back in personal training (strength training) with a different (neuro)Physio. This is indefinite. No, I haven't seen an orthotist, but I don't have foot drop, or have any reason to use an orthosis at all) Is all purely a spinal-cerebella ataxia and balance issue. I am surrounded (literally) at work by health care workers who specialised in progressive neurology, and am currently teaching it (post graduate level) myself. Drowning in advise. Gurgle gurgle...! @jman thankyou for the advise re power assist. I am considering it. I am eligible for assistance due to using it at work. Up to AU$15000 (no idea what that is in pounds). Have to admit I find the idea of power assist even more confronting then pure-manual. Not keen. Not super keen at all. My boss, who a month ago was not a fan of the wheelchair idea (mostly i think due to a narrow door to my office, hmmmm...) is currently promoting it. This week I bent over to get some files out of the bottom draw of a filing cabinet. Lost my balance and literally landed head first in the draw and then didn't have the strength to get myself out. My boss found me hollering and ended up having to help me out which was pretty humiliating all round. Not funny at the time either (yes, yes, I can hear you giggling). Do people have one they use only at work or leave in their car boot most of the time? Are there attachments (I have not seen any) where you can take your crutches with? Do the power-assist chairs come apart or are light enough to get in/out of the boot by myself? Many thanks, Jas

Graham100

@Graham100

Hi jas. sorry yes I did giggle, as the picture came into my mind, head in draw and legs kicking, lol. I once saw a car with a hoist fitted in back that lifted the buggy out, so can be done?

Stumbler

@Stumbler

Sorry, Jas, I giggled too. I know all about losing one's balance. I'm having a passionate on/off relationship with the floor normally - she can't keep her hands off me! It just hurts a bit when a wall or a piece of furniture gets jealous and makes a play for me! :lol:

jman

@jman

@JasFromTas I'll get some detailed pics of the chair and the bits and loading, unloading (I'm sure we'll have a friendly taxi man) and post them somewhere to view, unless @reddivine wants to before, shaky hands tho. The heaviest part is the drive/motor, and the battery, the only other part is a light anti tip wheel. RD's wheelchair is a lightweight jobby, so folds flat, feet come off and rear handles fold down to reduce size. RD was a bit concerned about powered, but. It stops as soon as you take your hand off the joystick, and and to my knowledge there's been no throwing out of shops for damage, claims for injury. Possibly damage to a small bit of shrubbery but thats about it:)

chrisgait86

@chrisgait86

I use wheelchair to get to get around. I don't love it but it is far better than falling and hurting myself all the time. I use my dog to help me get to the shops, it's brilliant fun, the dog is tied to wheelchair with a harness and lead we can go very fast, I've fell out a few times but it is so much fun going fast and dog loves it too.

Cazzzzzy

@Cazzzzzy

Cool @chrisgait86 ! ... Wow what a great companion you have there - sounds fab! :) xxx

reens

@reens

Hi again everyone, with the lovely rain today & trying to go out just wondering what anyone uses if they're using the power pack. Can find the usual wheelchair covers but mostly need to protect the motor. @jman?

jman

@jman

@reens. @reddivine is probably the one to answer this being the wheelchair pilot/driver. With the Benoit the pack is under the chair, so might get the odd splash. Best to avoid puddles and potholes however. There's no electrical contacts exposed, the battery connector is well hidden, the motor/drive unit contained, and the only contact is with the wheels to the rotordrive. What IS done is to wipe down the motor, wheels etc with wetwipes once in the dry to get any muck off it. RD doesn't DO extreme weather anyway, as one needs special chair for that:D hehehe!

reens

@reens

We have covered it with a carrier bag that has actually covered the motor and the battery pack quite well lol good to learn all these things before our big holiday coming up next month. We learnt to carry a set of screw drivers & allen keys in case something decides to come loose even while going about here!

StallionicChampionic

@StallionicChampionic

Hiya, I've just returned from a two week holiday in Italy and i took my wheelchair. The first time i've used it properly and it was priceless. Ok after the initial stares from the locals (that were probably more surprised by the fact that my father was pushing me about) i felt relaxed and could enjoy the fact that i could site see rather than stare at the ground looking for bumps/cracks etc in the ground!!! FYI, Italy is not disabled friendly........no dropped kerbs, old streets. If you go there you need somebody strong to help you get about!!

Zoham

@Zoham

Hi Jas, Just seen you'e post and I was in the same position a few years ago. It does seem like a big deal and in some was it is but I think, for me, it was about accepting that was where I'd got to. I was using crutches but had got to the point where I could only manage maybe 100 metres at a stretch and it was really difficult and tiring; it started to really affect what I would do and where I would go, which I think was the tipping point. So I took the plunge and got a chair. It gave me my life back. Of course there are issues with using a chair but not as many as not being able to go anywhere. I've been using a manual chair for years now and I go everywhere on my own, to town, the cinema, work etc none of which would be possible without it - it really gave me my freedom back which I hadn't really understand how much I'd lost until I got it back. Having said that it's really important you stay 'upright' for as long as possible, I think getting a chair to give you freedom but keep using your sticks where its easier, like around the house e†c might be a good combination. Good luck with whatever you choose but it maybe not as big a step as you think. All the best, Kevin

Graham100

@Graham100

Hi @zoham. What sort of money did it cost, iv got chair for airports but have to be pushed. Getting that way now,,

DJDsouza

@DJDsouza

Hate being pushed about in every sense of the phrase. Have an electric wheelchair and love it.... maximum speed is only 4.7 mph, but is a brisk walking pace, so can piss people off left right and centre before they try and figure out if it's acceptable to have a go or not ;) (and my driving is pretty good!)

Zoham

@Zoham

A half decent manual chair is pretty expensive, £1,500 plus. Mine cost best part of £3000. It's very light and I can transfer to car and lift chair in whilst sat in drivers seat. If you're in the UK you can get a chair on NHS prescription, what is offered will depend on your local NHS. They will also provide a voucher to a value if you want to source your own but that again varies by NHS Trust. I got a £2000 voucher and I got the rest paid by Access to Work (UK Govt scheme) and my employer so it didn't actually cost me anything. I also got a 'Smart Drive' (look it up on the net, amazing bit of kit for manual chairs), which is really expensive, paid for by Access to Work - if you're in the UK you should definetely look in to Access to Work if you are working

Graham100

@Graham100

Wow. Didn't no they were so expensive, I have been self employed for 30+yrs but haven't been able to work since may, good job there are more than 4 walls in my house. Lol. Thanks anyway.

Zoham

@Zoham

Access to Work is for self employed people also

jman

@jman

Grants are available towards costs ms society also grant search on turn2us I think Can't double check on the phone see previous posts

reens

@reens

Nice tip @zoham, I didn't know about getting a part payment for a chair through NHS. I use access to work to get to work & home with taxis, couldn't have done it without them but good to know if I get a house where I can actually store a electric chair I can speak to them about that too.

tedrobak

@tedrobak

If your upper body and arms are OK, why not consider a scooter? I got mine in April, and it's made a world of difference: I can go for "walks" with my wife and shopping is now a breeze, not an expedition like it is when I take the car and a cane or poles. And you can use one in Tas all year around, I expect. There are more robust ones (like I have) and even small folding travel scooters you can take right to the cabin of a plane (which I'm considering getting before my next overseas trip)

reddivine

@reddivine

JasfromTas this is my powerassist http://www.benoitsolutions.co.uk/ click on and you will see videos. Mines BenoitLightDrive Fits in ANY boot, as its breaks down to manual chair (6kg) + motor + battery + anti tip wheel I and my b/friend can lift each part, and he has a fistula in one arm. Its a two handed job, but usually taxi drivers are helpful. I started with a manual and then when one shoulder had problems, found upper body mobility was not enough to self propel. i'd post a picture but i don't seem to be able to!

JohnathanMac

@JohnathanMac

I know this is a bit of a dead thread but I wanted to let you see my new chair that was delivered today and didn't want to make a new redundant thread. I had a little ride out in it and it needs some adjusting but I am pretty impressed with it so far. The cushion is great and the chair is a Quickie Argon 2 and is really light, I'm really impressed. I have included a pic of me in the chair, in the only mirror I could find, one of the chair and another with the cupboard I store the chair in. I live in a top floor tenement so use crutches to get up and down and walk around my flat. http://johnathanmac.com/imghost/MeInChair.jpg http://johnathanmac.com/imghost/Chair.jpg http://johnathanmac.com/imghost/Cupboard.jpg

Graham100

@Graham100

Wow. 2k for wheelchair I will have to keep beng pushed for now. Good for you hope it helps you lots.

JohnathanMac

@JohnathanMac

@Graham100 it was supplied by the NHS, WestMARC. I would never have been able to afford it otherwise. :/

outlier

@outlier

Hey Jonathan, love your new chair, its a cracker. I've been using a similar Kuschall K Series for over a year now, it was my first wheelchair after the one I hired and at first i wasn't able to get out my house because of steps and stuff so i had a couple of garden slabs setup in my living room so I could practise bumping up and down them, similar to a pavement kerb in the real world - thought id throw the idea out there in case it gives you some ideas. Theres lots of videos on youtube teaching you "wheelchair skills" that are worth a look too.

JohnathanMac

@JohnathanMac

@outlier Thanks I got it adjusted so I'm now back to my old tippy self :P As for getting in and out I just do a little hump and I have hand rails to pull myself up. Sods law was that the first property me and the wife bought was a top floor tenement flat thats about 100 years old so no lift and not feasible to retro fit a lift in to it. We got the keys to this this quite literally the day before I was diagnosed with MS. So I have to walk up 3 flights of stairs which takes a long time but is doable and getting down them is, to quote Buzz Lightyear, falling with style! I have been using an old RGK chair for about 9 months that I bought from a friend with a spinal injury that he had sitting gathering dust so I'm pretty good in terms of getting around and hopping up kerbs. I was an avid cyclist before my MS so my upper body strength needed work but every time I go out I seem to be able to push further before my arms give up and I need a rest. As for youtube it was a goldmine for little tips and helped a lot since you don't really get any guidance from the NHS with regards to this and it has helped with figuring out how things operate when you are in a chair, most notable flying. We have booked a holiday for next year and I was curious about the airport and going on the plane but since we are getting the new 787-Dreamliner apparently they now have a wheelchair accessible toilet on the plane and there is a good chance I will be able to use my own chair that they will store in the cabin for me and the airline has been very accommodating in part paying for taxi transfers since I doubt I will be able to get on a coach bus.

outlier

@outlier

Ahh i kinda assumed it was your first wheelchair, but its good to hear your way ahead on the basic essentials of getting around, i've still got a long way to go myself, especially upper body strength, its amazing how the smallest of hills you've never noticed before can slow you down. I hadnt heard of the new 787-Drealiner, it sounds pretty good. Have you any idea if they have an onboard wheelchair that can help you get to the toilet door? Flying was a big concern for me too, longest flight I've done was 4 hours with Ryanair and I basically dehydrated myself for the flight, luckily that worked out and no toilet visits were needed. Some good points were the airport assistance on and off the plane, faultless to be honest, especially abroad. Before the first flight with my chair i seen a short video by Frank Gardener the BBC reporter about flying with a wheelchair, he had some good tips i took note of, but im not sure they'll be necessary on the new Dreamliners, would love to hear how things go once you get back though, and I'll need to figure out how I can get on a 787-Dreamliner next :-)

JasFromTas

@JasFromTas

Ola chaps, Love the new wheels Johnathan, and totally agree about youtube, lots of tips though some of them I am not game enough to think of trying (going up/down stairs...?). Had some interesting times on my last flight (was 'crutching' it about) Melbourne to New York via LA (about 25 hours all up), totally would go with a w/chair accessable toilet if I could. My legs definetly decided to stop walking well before we landed! And the worst moment was when they decided to turn on the seatbelt light and announce turbulence just when I had sat down on the loo... Hmmm...

JohnathanMac

@JohnathanMac

@outlier Yeah I was surprised as well to find that out. I was thinking about making my wife record me as they go through the security and on to the plane so there is another youtube video since there are only a few at the moment and some are less than detailed. So when or if I do this I will make sure to link it on the forum. Not going till September next year though. @JasFromTas Toilet turbulence is never nice! As I said to @outlier I am going to try and make a video of the experience for others to get better information. I did think about contacting an airline to see if I could make a video sooner by just having access to a 787-D when it is landed and waiting to board. Not made any enquiries as of yet but don't think it is impossible and hopefully they may see the benefit to those in wheelchairs and allow me access.

pam-newall

@pam-newall

I finally gave in and bought a little scooter. I don't use stick at home but can do short distances only out. I still hate it but have also sorted Motability car and a hoist I can manage scooter storage in boot on my own. Ive learnt to drive hands only too. Have a look at Instagram @pamnewall and you'll see I outed myself on it.X