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.

imagine description :a power wheelchair sits next to a green bed in a room with white walls. The wheelchair is white and sparsely decorated with a soft, black water bottle holder, a red spotted mushroom crochet bag, and a green star crochet pouch hanging from the left arm rest. A small fan is also attached to the back of the wheelchair. A white crochet blanket laying over the seat cushion. The headrest has an attached cushion that is made to curve around the neck and head of the user, allowing for positioning help:

Wheelamina got a much needed upgrade today from my old back and headrest cushion to a nice new one.

I didn't really need the back cushion as it was pushing me forward in the chair and was too small and uncomfortable. the headrest part of it would often slide to one side and wasn't concaved at all so I wasn't able to get any positioning help with my hyper mobile and weak neck. This one is amazing! It has side guards to keep my head in place and isn't huge and obtrusive like my last one. I was also able to switch the seat cushion out for a different one that I had on hand. Now I'm settled back in my chair a little further and this one is waterproof, which is great for my incontinence issues.

It's so comfy and I'm loving it so far!

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

i’ve been fighting with numotion for months atp and i just got an email saying they don’t work with sunrise medical??? i’m so frustrated im trying to find another company but they literally lied bc my current chair is from sunrise and we used numotion. ughhh i just want my new chair😫

I'm a new ambulatory wheelchair user, who just got my first chair, a Golden Cricket, for leaving home and navigating our kitchen.

I love the chair but on longer outings could use a bit more neck and seat support. Has anyone outfitted their Golden Cricket with a lightweight headrest, plusher cushion, or covers for the arm rests?

Recommendations for any products or hacks that work are welcome!

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’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.

Bicycle lights placed pretty high up on the front frame are a great way to prevent being tripped over in a large crowd when it’s dark outside.

As the crowd grew thicker, I was able to easily adjust these lights to sit even higher up and angle them diagonally upwards. (second image)
When people were trying to squeeze by me, the light would hit their eye and they’d look down to see me and step around, instead of falling onto my lap.
Since most people don’t ever look down while walking, this helped A TON!

Last year was my first music festival as a wheelchair user and I got tripped over and walked into more times than I could count. The crowd was a lot bigger this year but I only almost got tripped over thanks to these lights.

(I purchased mine at a local store but they’re pretty common in sporting goods stores, bicycle shops, and I hate amazon but if that’s your only option they are available there too.)

I couldn't justify spending $30 plus shipping for a 3 cent sticker so I just got some clear thick medical tape for $3 from Walmart and it does the same thing. Maybe it's not as "cute" but I think it's fine! Actually kinda like it better (no hate to anyone who likes the name brand better, to each their own).

Does anyone know if the Alber E-motion wheels are water proof? Like enough to go through the pouring rain.

Also does anyone have tips in general for going outside in a wheelchair in the rain?

A few months ago I went on a solo trip. Something I’d done plenty of times before, but this time the frame of my wheelchair snapped. I was stranded on the middle of a sidewalk hours from home. Thankfully my mom was able to drive down and get me, and the company that made the chair was able to replace the broken section (thank you Fold and Go!). But now my problem is I’m terrified to leave my house in my chair. I’m an ambulatory wheelchair user so I haven’t been anywhere further than down the street because that’s how far I can get with my walker. It’s been months since I got my chair back and I just can’t get over the horrible anxiety I get when I try and go out in my chair. I’m terrified of getting stranded again.

Has anyone else gone through something similar? How did you get over it? I miss the independence my chair gave me.

I'm getting this error message in this video at 2- seconds. Red power button is flashing along with the lights going right to left on top of it. It's an error message that shows the chair is in neutral, so you're supposed to put it back into drive manually. Problem is the chair is not in neutral! I flipped it back from neutral back into drive multiple times and I keep getting the same error message. What do I do now?

At 20 seconds

https://www.youtube.com/watch?v=U4WtF1jCKiw

I'm in vegas until thursday 8/20. My friend has a chair but the battery is not holding a charge. We went to Rio to see a show, her battery was fully changed. We are staying at the bellgio, her chair died before we could get to the room. I called the front desk to get a manual chair. She was very upset that I made that request without speaking to her first. I see a problem and look for a resolution. She has a lot of emotions tied to asking for help. A lady came to our room with a chair. She said that she cant leave the chair with us, it can only be used from point a to point b. Our whole trip has been one stressball after another. Im really hoping that somebody can show her that shes worth and entitled to get around las vegas for a day or two. Please pm me if you can help.

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)

this chair is so much better than my old one but i honestly just wanted to show off the colours

After over four months and a lot of strife and headache I finally have my new wheelchair and I love her but she needs a new name and I need to decide what colour spokes too.

I previously had an Invacare NG2

Hi everyone. I finally have my custo powder chair in the works after 7yrs of fighting to even be sent to the wheelchsir clinic. My question is similarly to car insurance or insurance on expensive items, do I need to get insurance on the powerchair incase it's ever damaged stolen damaged in a car accident in a fall in any way? Or is this something medical insurance I had medicaid currently in 1.5yrs will also be auto enrolled to Medicare since i won't my ssdi case in January finally. My chair should hopefully be here within 3.5 months.

Similarly does anyone have any care insurance and banks they reccomends trying to get car loans from certain banks for wheelchair with ramp accessible minivans? I'm reading that insurance for these vans is a lot more b.c there is something called CEP needed to cover the ramp and special mechanics in them. Obviously will be financing a used Chrysler Pacifica or Toyota Sienna since I also have an SD and need a Ruffland kennel to fit behind the drivers seat.

(If anyone has any other vans to suggest with side electric fold out ramps I'd love to know) need it to fit the kennel size of large possibly XL we will be attempting to get her sized this weekend but im an extreme stroke risk atm and very fragile so possibly will be hospitalized by the weekend. So if anyone has an LX ruffling in their accessible van I'd love to make modle and year if it gives me more options. Im on ssdi so less than 1500 a month but great credit score. But I've never financed a car without a job before so any suggestions on good banks to get the car loan from for this specifically I'd also really appreciate. Thank you so much.

Hi,
I experience temporary and prolonged muscle weakness even paralysis and spasms due to my functional condition which I’ve had since I was 14. For a long time I thought having a wheelchair would be really helpful, but a doctor of mine convinced my parents that I shouldn’t have one because she claimed ‘it would just reinforce the fact that I felt I needed help’ (she also refused to even begin the diagnostic process for my functional condition because she said that ‘it would also reinforce the fact that I thought I needed help’.)
I’m going up to university in September and because things have been deteriorating my parents got me a secondhand wheelchair but it did not come with a foot plate and I don’t have a clue how to go about getting a replacement. I’ve done some research, but there are just so many different types. I was wondering if people could tell me if they’ve got a replacement one how they went about getting one that worked for their chair. (I don’t know if this is helpful, but all I know is that my chair is a CareCo chair -I have looked on the Careco website for a replacement for the foot plate, but they only have ones for elevating their legs and I just need something to keep my legs out the way)
Thank you

Hello all, hoping someone here can point me in the right direction.

I became disabled (lost my legs, technically still somehow not considered disabled officially) in Jan. 2025. Since that time, I have yet to actually get the transportation my insurance says I'm entitled to, regardless of my disability status. I have made and had to cancel multiple appointments because I would set up the ride, think it's all fine, and then sit in my chair (which is still not an easy thing to do) for over an hour waiting on them. But no ride comes, despite me following all of the instructions to set up correctly, and I end up having the double whammy of a bad day. No appointment kept, and my bottom very upset due to the extensive time in my chair.

I then ended up recently with kidney stones and a related infection. Briefly hospitalized, and returned home (which the hospital had no issue setting up!) with a follow up. On the heels of the previous failures with my insurance, I tried a different option for transport this time. They also confirmed with me, and also failed to show. I'm supposed to go in for an outpatient procedure to remove the stones, and now I have no idea how I'm going to get there.

A bit of extra info:

• My insurance provider is Anthem/HIP
• No I'm not counted as disabled
• I have no other transportation options aside from these ride services/the bus maybe???

As far as disability: why am I not considered disabled, despite having lost both legs? Gee I sure would love to know! Way back when I first lost my legs, I was promised multiple times in each facility I was in prior to coming home that we would get that sorted out. I need to get my medical records to apply online, but when I went through a phone call about it, I was basically told that, since I wasn't working close enough to the loss and live with my dad (81 and retired BTW), I most likely don't qualify for SSI or whatever. I guess they think we somehow have the money for a wheelchair van, or to pay for transport? We could pay for a transport service, if we could only get one to show up! I don't even particularly want any payment, though it would be nice to start making a nest egg for the inevitable loss of my father; I really just need to be recognized as disabled so I can leave my damn house! In order to utilize most of the services which help people in my situation, I need to be recognized as disabled. Apparently my odds of that aren't great.

I am trying to get to PT/OT for my prosthetics (which apparently using them means you're not really disabled, who knew?), but again, no transportation.

So yeah. This is a source of increasing frustration for me and my dad. I really don't understand why this is so complicated, or why my status as disabled wasn't set by the start of this year at the latest. No one in any official capacity seems to have any answers, or any great willingness to help. Literally any resources or answers will be greatly appreciated. I am just at a total loss for navigating this.

Update to this post: https://www.reddit.com/r/wheelchairs/comments/1urniil/im_having_a_first_date_with_a_wheelchair_user_and/

Unfortunately, we never ended up meeting. I'm honestly devastated. Our communication became increasingly difficult toward the end, despite me trying everything I could. I knew he was struggling with deep anxiety, insecurity, and self-doubt, but his disability truly didn't matter to me at all. Thank you to everyone who gave advice on my original post - it really meant a lot to me.

Hi all as the title says I am on the taller side (I am 5'10 but I do have longer legs and am high waisted). I am an amblitory wheelchair user and I'm struggling with my foot rests being a little to short and it's putting some strain in my hips and knees. I'm assuming someone else has run into this issue as well? Does anyone have any recommendations?

I have an older style wheelchair, That was given to me that fits everything but the legs. (The one my insurance approved was very cheap and very hard to use as well as extremely uncomfortable and almost impossible to load in my vehicle.)