r/wheelchairs

Ambulatory and looking into trialing a chair. I have foot dystonia, wanted to ask what y'all would do in my shoes.

Wtf.

So for most of the last year or two, I've been having issues with my insurance refusing to cover things related to my wheelchair. I have been dealing with pressure sores and having to pay out of pocket for repairs, new seat cushion and tires among other things due to this. I found out that while they originally paid for my wheelchair back in 2021, they revoked that payment two years later?! Which according to the DME company is not only completely legal for them to do but it's not uncommon.

So only in the last couple months after years of fighting, have we been able to pinpoint that their refusal to pay for things related to my chair is due to mainly 2 factors. They didn't technically pay for my chair in their view, and the diagnosis codes my doctor is using are apparently considered below the line. According to the insurance rep I just spoke with, that means that either my dr needs to use a different diagnosis code that's above the line, or if that's not possible, I have to take it to the hearing level to get my chair.

It's so wrong, 9-12+ pages of medical evidence with every order, multiple years of PT and other specialist evals, my drs orders, isn't enough for them to pay. I'm basically bedbound without my chair most days, and I'm being told that my only recourse could be going to court with the state to prove I need it?! This is so wrong, and it's so messed up how casually I was told this info, like it's just so completely normal to them. All because there's only 2 specialists in the entire state that can "officially" diagnose the hypermobile ehlers-danlos syndrome I live with, that my drs have been treating me for and all agree that's what it is, but none of the ones who could are willing to put that down officially because "they just don't have confidence in their ability to diagnose that". So I get to sit on waitlists for the 2 who can, one an hour away with a 5+ year waitlist, and one 2 and a half hours away who should really be retired but can't because he has nobody to replace him, with a waitlist that I still don't know how long it will be.

I have multiple family members who have somehow managed to get diagnosed by other providers without this bs, because I count as family history of EDS for them. And I'm so grateful that I've been able to help family access care. But while it's been identified and treated in me for over half a decade, I still can't access certain things through insurance that I need, and even when insurance does cover things, I often wait months before they send the approval, then wait even more months for the provider to have an appointment, then back to the insurance for the next step. How am I supposed to live like this?!

How do I even begin to advocate for change on this, who can I talk to that would even have any power to change this? I hate how difficult my country makes it to exist as a poor disabled person. I just want to be able to live a simple life with my basic necessities covered, and know that when my medical team says I need something, I won't have to wait literal years to get that care. But that's apparently too much to ask for.

hihi! so i'm gonna be freed from apartment jail soon hopefully (yay! no more stairs!) and i'll be immediately looking into getting a custom chair. i know people have their preferences for this kind of thing, but what's specific to your chair that you like/helps you? like camber angle, wheel spacing, taper, handrim type, footrest, material type, etc? why specifically?

not using this to customize my own chair per say, i'll have my physical therapist and an ATP to help lol, but let me know, i'm curious :) i'm really excited even though i know the process will probably take eons....

Hi! I am travelling to the US quite soon. As a european I don't have too much experience with american airlines. Last time I travelled with United, and everything was ok regarding the chair itself. What are your experiences? Which airline is the best for wheelchair users?

I need an aisle chair avaliable to go to the toilet. Last time I had to limo my way over, supporting myself on every seat on the way and annoying sleeping people. Is that something I need to specify, because I did request WCHC. But the flight attendant told me they could not help me get to the toilet. I am travelling by myself btw.

Also, side note. The assistant meeting me at the airport was super inappropriate. After we had walked/rolled in the open for 5 min and entered the lift, he waited until the doors closed and told me I was very pretty and if he could get my number. I told him I was married and that my husband would not like that (it was a lie but I was so uncomfortable and scared). He continued to pressure me and I just told him I did not have a phone. I have never ever experienced this at european airports, is it common??

I’m currently working with a client who has become a friend and her experience with Numotion has been infuriating. For around 6 months they’ve been taking their sweet time fixing anything that needs to be fixed. Most of the time - when someone has come out - they either don’t know what they are there for or don’t have the correct parts. The tilt on her wheelchair has never worked right and they keep telling us that her neurologist needs to sign off on fixing something that shouldn’t have needed fixing in the first place and he HAS signed off and when they did bring the parts they didn’t have all the parts. Now they are saying it will be October before someone can come out to fix the tilt, and she literally may be gone by October! Despite her OT trying to work with them, and calls and emails, they never seem to know what’s going on and can’t get anything done. It’s absolutely insane and infuriating that they can do this to people who are literally dying much less to people who literally NEED their wheelchairs to function.

I have spina bifida (t11, myelomeningocele) - meaning I was born completely paralysed from the waist down. I have zero function or feeling in my legs, so have used a wheelchair all my life.

Any newer/ambulatory wheelchair users, feel free to ask me anything - hopefully, I can answer some of your questions!

Hi everyone, I would appreciate any feedback you want to share. I have a power wheelchair, and I have a vehicle lift on the outside of my car.

I am afraid to take out my wheelchair anytime it rains or there is a forecast of rain. I have been homebound a lot this summer because of rain. I do have a cover for the wheelchair, and I was told to put a plastic cover around the joystick area, which I do both. However, using the cover isn't the easiest thing to do, and I am still quite concerned that the water could somehow get under the cover and short out the electronics. Is this what other people do, stay home when there is rain / forecasted to rain?

Thanks in advance for your time and ideas.

Hi! I’m trying to decide between aluminum and carbon fiber fenders side guards. I’m going with removable side guards, so the weight is less of a concern for me.

My side guards will be around 10.5**״** high, and I sit on a 4” cushion.

It looks like the carbon fiber ones are more flexible than the aluminum ones. On one hand, I feel like the aluminum might be more comfortable if I need to lean against the side guard. On the other hand, the carbon fiber seems a little more flexible, which might make it more comfortable around the sides of the body. I’ll mention that I have full sensation.

I’d love to hear about your experience, which one did you find more comfortable?

I’ve been using a custom folding active chair for about a year now and still can’t get a wheelie. I feel like all the tutorials I’ve seen have been in rigid chairs and it got me wondering. Am I missing a trick, or can you actually only do proper wheelies in rigid chairs?

I got a new chair today, it’s a folding powerchair. I got it secondhand as it’s all I could afford and it’s the best thing I’ve ever done for myself, especially as I can’t use a self propelled chair independently anymore. But I’m worried.
I still love with my dad, I’m unable to move out until early next year and my chair doesn’t fold as much as I thought it did. Seeing it in photos wasn’t enough to see how much it did fold.

My dad has never liked me having a wheelchair, but without it, I’m in pain and I get very fatigued and ill after going out. I had a self propelled wheelchair before this, it folded and as my dad refuses to have it anywhere else in the house, it went in the hall by the front door. My new chair takes up slightly more room than my old one does and I don’t know how he’s going to react. He knows I have it, he’s seen it briefly, but he hasn’t seen it in the hall yet and I’m worried he’s going to get really mad. He was mad when I told him I got it. According to him, all I have is an exercise issue. He doesn’t see how much I struggle and doesn’t even try to understand. Without my chair, I can’t leave the house independently, or if I do, I am absolutely drained and unwell afterwards.

I’m 20 years old, I’m saving to move out, he just has to deal with it until early next year. I feel like I should be happier but I’m just so worried right now.

Hello wheelchair informed humans! I’ve got chronic pain and fatigue diagnoses and my physical therapy team has suggested I look into getting a transfer wheelchair. The goal is to have an option for participating in activities out in the world with my partner and friends, even on low energy/limited mobility days. I may end up being limited based on what’s available where I am and what my insurance will cover, but does anyone have recommendations?

Some information that seems relevant, based on other posts I’ve seen here:
-Needs to be relatively lightweight and able to put in the car
-I have some financial support so a chair that is ideal and long-lasting is more important to me than something inexpensive
-I’m in the U.S., so something U.S. based or that can be shipped to the U.S. is necessary
-I’m 5’4” and around 180lbs

Thank you~

i'm in a Situation right now i swear. every time i sit while wearing pants (in my wheelchair or otherwise) i notice my crotch gets extremely numb and tingly and painful. i do not think this is an issue of my chair or cushion because it happens whenever i sit anywhere while wearing pants. unfortunately i cannot just be pantsless because it is socially unacceptable. i have even tried adaptive pants and i still have this problem. i think it might have something to do with the way most pants have a crotch seam in the gusset area, but even when i seam ripped the crotch of a pair of pants and added in a wide gusset i still had the issue. doesn't matter the material or style of pants. i always have this issue. has anyone else experienced this? is there anything i can do?

i am unfortunately cursed with... generous skin down there, so to speak, and i think this might be the main cause? i've talked to my ATP about it too and genuinely that's the only thing we could come up with since my issue seems to be present regardless of other clothing related factors. all i can say is that it only doesn't happen when i sit nude or only in underwear. i do have to get wide gusset underwear for similar reasons. but i genuinely don't know what i can do about it. i know there are surgeries to reduce excess skin down there but it's considered plastic surgery as far as i know and i cannot afford that lol. i wish insurance would pay but i don't know if "my meat curtains hurt really bad and go numb when i sit" would be considered an actual medical reason 😭 genuinely help me because i don't know what to do 😭 thanks

Have varying levels of foot dystonia that have caused injury and pretty severe impairment but every doctor I've seen has acted like I'm asking to be put down when I bring up getting a wheelchair. Ideally looking for something like a medical closet in central texas with a secondhand chair or an ebay shop that's known for lower prices until I can get something better and I'm less burnt out by doctors, lol. Will probably try to get a paradox chair next year, just need something to tide me over until them. (Part time use, on sidewalks and inside)

I run a machine shop — CNC mills, lathes, 3D printers, laser. I keep reading about people waiting months for simple replacement parts, or paying $80 for a plastic clip that breaks again in a year.

So I'm asking the people who'd actually know: what's the part that fails on you over and over? Or the one you've been waiting on forever? Brackets, mounts, knobs, holders, wheel locks, footplate hardware — whatever it is.

I'll make the part free for the first few people who reply with photos and measurements of the broken part, in exchange for honest feedback on fit and how it holds up. If the original was plastic and it's a good candidate, I can likely remake it in aluminum so it doesn't fail the same way twice.

Not selling anything in this thread — just trying to figure out where the real need is before I build anything. Drop a photo of what's broken and I'll tell you if I can make it.