Notes on a new(-to-me) wheelchair

[kaberett]

Lots and lots of tweaking has happened over the past few days -- I've brought the footplate up a fraction, I've adjusted the upholstery tension, I've removed the arm rests and anti-tips, and I've swapped a drinks bottle holder onto it. A, meanwhile, has provided Sheer Brute Force and willingness to do fiddly little bits, and (a) got the axle bar moving for me and subsequently tightened it up again (so it's now medium tippy as opposed to not-even-remotely tippy), and (b) swapped the brakes over between chairs, so I've got scissor rather than push brakes on it.

So far I've used it getting home from Edinburgh on Saturday (with flat tyres, pre-tweaking) and out & about Sunday and today (post-major-tweaking).

It is wide enough for my hips. The clothes guards are sufficient that it doesn't destroy my trousers. I am very excited about both of these things, not least because it means the thing hurts less. The downside on this point is of course that being several inches wider there are a few places I don't fit as comfortably as I have historically (e.g. I've got to decide where in the carriage I want to sit, if I'm taking the Victoria line, before I board, because I'm no longer narrow enough to squeeze down the aisle between seats), and I'm being a bit clumsier manouevering on buses while I get used to being a different shape, but all of these I can Perfectly Well Cope With.

Greater width plus higher back also means that I just don't have to worry about slinging a backpack onto it -- none of the straps are trying to get caught in the wheels, and I don't have to be incredibly careful about avoiding having the bag drag on the ground.

The pushrims are coated. Which means that they're much higher friction: this is great in the wet, but it took me until partway through yesterday afternoon to get my head round how this affects braking. (With uncoated rims on my otherwise-matching set of wheels, you brake by pressing your hands flat against the pushrims, which slows you gradually; you can't brake by grabbing onto the pushrims and not letting go without having them slide through your hands enough that you ram your fingers painfully against the attachment tabs. With the coated rims, braking like that is a recipe for friction burn, but I can stop pretty much instantly by grabbing hold of the pushrims and not letting go. This is actually making fine adjustments to steering slightly more complicated -- I've been doing those by tweaking how much pressure I'm putting on each pushrim -- but I will work it out.)

The Frogs Legs -- front-fork suspension -- definitely feel different, but I'm having trouble articulating the quality of difference. More Experimentation Required.

The folding back and slightly greater length are making getting it up and down stairs slightly trickier to do elegantly, but I'm getting the hang of that (and also have worked out the trick to getting it in the front door without taking a wheel off, not that that trick will be required for very much longer).

Notably, what the greater width is not doing (now the tyres are pumped up and the arm rests are removed) is wrecking my shoulders/elbows/wrists -- which is the thing I was concerned might happen. That's with, as I say, fairly heavy use over the past few days -- yesterday I bimbled around KGX finding Ruby Violet, followed by heading down to SOAS for BSL, followed by pushing from SOAS back to KGX; today I got myself down to Soho for an appointment at Dean Street, went round a supermarket, and then pushed myself back up to the bus. Which is... sufficient to convince me that this one is very much a keeper.

Comments

[davidgillon]

this one is very much a keeper.

Yay!

With the coated rims ... I can stop pretty much instantly by grabbing hold of the pushrims and not letting go.

Ulp! Not certain I'd like to try that with my shoulders.

It does raise the question of how you would manage a slope steep enough that constant braking is required. With gloves, I guess, but it sounds like you aren't using them all the time, while I do (outside of the house at least).

Will look forward to more thoughts on Frogs Legs!

[kaberett]

I've been using the neoprene thumb splints hand physio gave me, but they don't actually cover the entire palm of my hand so I've been doing kind of awful things to my elbows in order to brake anything like enough -- I think digging out a proper pair of gloves is indicated, yeah (tried going down the hill earlier!).

[davidgillon]

If I tried going down the hill outside my place without gloves you'd read about it in the news!

[kaberett]

PS I acquired a thigh holster on your recommendation and it is BRILL - thank you!

[davidgillon]

Glad it works for you too!

Still finding stuff I can stuff in mine.

[(Anonymous)]

Can you recommend a source, or expected price? I saw your recommendation but at first pass trying to find one didn't stumble across anything that seemed suitable. I'm also wondering about something for my calve instead or as well as, I tend to wear dresses or skirts, so pen and a phone around my calf seems a good idea. I do use a small flat zip bag that in theory was a wheelchair armrest bag, but it doesn't fit on any kind of wheelchair that fits on any type of human I've met. I tend to put it behind me where it seems to be safe and cause no discomfort, it's where passports and boarding passes go, plus notes, hotel key, basically travel stuff. It fits my phone but that's uncomfy, hence thinking calf for phone and thigh for less frequently accessed things.

[davidgillon]

Got mine from Amazon, technical term is a drop leg bag, and I think mine was £12-15.

[kaberett]

I got mine off eBay for fifteen quid but it's disintegrating some so I need to sort out a slightly sturdier replacement.

The other option is probably something like http://www.epc-wheelchairs.co.uk/spares-accessories/wheelchair-water-bottle-mobile-phone-holder?original_route=spares-accessories%2Fwheelchair-water-bottle-mobile-phone-holder

[(Anonymous)]

thank you both, not knowing the technical term certainly didn't help, especially as I don't want to carry a gun.

[davidgillon]

This is the one I bought, though I think from a different Amazon vendor: https://www.amazon.co.uk/HuntGold-Multifunction-Useful-Utility-Carrier/dp/B00IKWVTI2

If you use 'drop leg bag' as your search term at Amazon you should get tons of options. Mine's still intact after over a year of at least weekly use. Note that you don't actually have to use the thigh strap, its main purpose is to stop the bag bouncing if you're walking/running, which doesn't really apply in a chair. I generally have mine very loosely fastened - loose enough I can tuck it between my legs if I need to move it out of the way.

[(Anonymous)]

I think I found that exact one, your height, rough build and any data about your chair might help me figure out if it's a bad idea for me. I figured with that one I'd have to deliberately not allow myself to fill it.

[davidgillon]

I'm five eight/nine and reasonably stocky. The XLT is roughly the shape and size of a standard folding manual.

My leg bag typically has: pen, phone, wallet, keys, a few pills and a multitool in it. I added a pen-torch recently, but that was more the torch was lying around unused and there were all these empty pockets... A lot of which are too small to be useful for anything much larger than a pen.

It will take a Kindle Fire as well, though ony just. There are several pockets on the underside, including a full length concealed one with a zip, I found that massively useful for cash+passport when I was on holiday.

[(Anonymous)]

I'm going to have to do some measuring with the phone/waterbottle holder, it looks like it fits a space I don't think exists on my chair. On the other hand I'm getting a new chair soonish (long story, NHS agree I need a chair but recommend I don't self propel, therefore rather than an electric wheelchair so I don't have to and at least conceeding that a transport chair did not meet my seating needs, they came up with a non rigid, non active user level of chair they would fund, I clearly need a rigid chair and the active user bit means everything is easier so I can have more independence. Since when was it ok to tell a 36 year old mother of three that because she can take a few (and I really do mean a few, like ten or less) steps that she should have no further independent movement). Given getting a new chair accessories that attach to chair not person should be off the shopping list.

[davidgillon]

Unfortunately this is a common problem with Wheelchair Services, I've got a bunch of friends stuck in the same Catch 22. The national standards for prescribing powerchairs are perverse. If you can stand you don't qualify, even if you can't self-propel.

I went through a similar sort of process to you. Wheelchair Services initially dumped a heavy non-rigid manual on me without even assessing me. My GP agreed pretty much immediately my needs hadn't been met and urged me to write to them, which took me a while, but by then I had evidence to show the chair wasn't just not good, but was actively damaging. Which got their attention, a proper assessment and my new active user rigid arrived a couple of weeks ago. Having been back and forth to their site recently, it's clear the one I was originally given is their default 'fleet chair' for low needs users who aren't expected to use the chair all of the time. All the amputees waiting for limb centre appointments were using exactly the same model I'd been given.

[(Anonymous)]

I think I read the beginning of that on your blog. My GP is ace and she wrote a very thorough form for the referral, after months of campaigning for there to even be somewhere she could refer me and a couple of other patients to. The assessment went well, but it was easy to tell they were stuck between a rock an a hard place with what they could give me and the assessor did at least bump it up a level, though came back with a no. What annoyed me more is they wouldn't answer questions about the right chair, fortunately trip one to the show room showed us that probably isn't a problem and they know more anyway. I was lucky that when buying my first wheelchair it was very much a case of not feeling the NHS should be providing me with one but finding more and more things simply weren't possible and life revolved around could we borrow a chair when we got there. This meant I'd tried a few and we went for the more luxury end of folding non active user chairs, including attendant breaks, which both the smaller wheelchair place and later the NHS said didn't exist.

There are so many reasons I don't actually want a power chair anyway, I'm not pushing that one, though I keep intending to write to my MP and point out how ridiculous this is. The annoying thing about the more active style chairs is they are less attendant friendly so whilst it seems I should be able to get about more, something like getting back to a hotel at the end of the day is going to be harder on my partner.

[kaberett]

It may be relevant to note that more active style chairs can and do come with the option of adjustable-height push handles!

[davidgillon]

The active user rigid I ended up with (Invacare XLT) does have options to suit it to attendant use, both adjustable height push handles and attendant-controlled brakes are available. The one I tried out for fit actually had the adjustable height handles fitted, they would certainly do the job, though I don't think it's a particularly elegant solution. (I was offered a choice of the XLT or a Quickie Life, I took the XLT because it's lighter - titanium frame - but Quickie see to have far better stylists than Invacare)

[(Anonymous)]

well that was an adventure, I eventually settled on buying a military style waist pouch and some webbing as when I started reading the numbers it seemed something thirty cm long might end up a bit deep. What do you find, kaberett? from pictures and size info about chairs you are probably similar height to me (i'm 5'5").

[davidgillon]

Huh, I used to use something similar to that with crutches. Must have a dig around and see if it's tucked in a cupboard.

[niqaeli]

\o/ I am glad the chair is working out for you!

[davidgillon]

While we're talking chair-hacks, any recs for hex key sets? I should get round to adjusting the tippiness on the ebay GPV at some point - I've sort of gotten used to it on the flat in the house, but last time I took it out in public it was near impossible on kerb cuts. Plus one of the brakes is definitely not set quite right.

Of course I'll not sooner do that than I'll get the call to come pick up the XLT.

[kaberett]

I use Gorilla Gripz - chunky enough that holding them doesn't hurt, and tricky to lose the one you actually care about...

[davidgillon]

Thanks, just ordered one ;)

[sylvaine]

\o/

[silveradept]

Sounds like a good fit, now that all the bits are engineered to you instead of someone else.

[swaldman]

Huzzah!

[cesy]

Exciting!