Hello from a perplexed ambulatory wheelchair user

[PapayaRafter]

Hi! I live in the US (the DC area) and I'm in my late 20s. I'm not paralyzed but I do have multiple chronic medical conditions that severely limit my ability to walk. The biggest of these is Ehlers-Danlos Syndrome, a connective tissue disorder that can cause many problems. I have lost the ability to walk very far because of the resulting severe joint instability. I can walk around inside my apartment, meaning insurance won't pay a dime, but I can't walk further than the parking lot. I also can't drive, also due to the EDS, and specifically due to craniocervical instability and atlantoaxial instability. If I drive, I get horrible neck pain and severe headaches. Also, if I got in a crash, I would likely need emergency fusion surgery for my neck (I might need fusion surgery anyway. Fun!) Pre-COVID, my health wasn't as bad, and Lyft was a reasonable option. I've moved since then to get better medical care and things here are a little different.

I am basically stuck in my apartment unless someone drives me somewhere. The only places I go right now are doctor's appointments and my mom's house, which is a little over half a mile away. I would like to explore a little on my own and get between my apartment and my mom's house without making someone drive me. Post-pandemic, I am likely to also use it indoors in places like bookstores. A power wheelchair might even let me go grocery shopping. I'd like to at least be able to take out the trash!

I'm 5'4" and about 130 pounds (9.286 stone if I typed that into Google correctly). There are a number of hills in the area. I'm in a suburb so ideally I'd be able to go across grass, sidewalks, and roads, in addition to inside. While I won't need to use a wheelchair all day, my body is in lousy shape and I have chronic pain. The reason I stopped driving is that the seats are so awful for me, the head restraints (too far forward for me; I have a straight neck in addition to everything else, and lousy core strength, so when I sit as upright as I prefer as a small person, the seat just doesn't work for me) so I will need something somewhat supportive.

I would like something lighter so that at least my sister with the Honda Pilot could get it in her car, if not my fiance's Prius or my mom's Civic. There are also a couple steps in front of my mom's house but it seems like it shouldn't be super expensive to get a ramp (famous last words).

Anyway, I'm picturing a narrow wheelchair that is relatively light and folds but can handle inclines and bumpy sidewalks. I have a feeling this might be too much to ask for. The most important use right now is outdoors. But I do live in a small apartment.

I'm wondering if anyone has ideas on where to start. I was looking at a lightweight manual chair with SmartDrive but it seems like SmartDrive can be kind of buggy and doesn't last long enough to be worth the cost.

Oh, and I would also strongly prefer something at least kind of waterproof. Sometimes the weather around here can change on a dime. Apparently a lot of power wheelchairs can't handle any rain but surely some can at least not break if it drizzles?

[Burgerman]

I was with you and was thinking I knew what to suggest. Until this:

I would like something lighter so that at least my sister with the Honda Pilot could get it in her car, if not my fiance's Prius or my mom's Civic. There are also a couple steps in front of my mom's house but it seems like it shouldn't be super expensive to get a ramp (famous last words).

All of the things you want, including handling bumps, inclines, outdoor use, etc means a large full sized powerchair. Which will not be compact light or folding. So you want the impossible.

Anyway, I'm picturing a narrow wheelchair that is relatively light and folds but can handle inclines and bumpy sidewalks. I have a feeling this might be too much to ask for. The most important use right now is outdoors. But I do live in a small apartment.

Those dont exist.

So you are at a stage that means some big choices. What you really want is your house modifiying or moving to allow easy wheelchair access, wide doors, and a place with no steep hills and decent surfaces. And a disabled adapted van that lets a real wheelchair drive in and out for transport. Because what you are going to do now is buy an unsuitable chair, struggle for a bit and waste a load of money on unsuitable ramps etc. Only to end up doing the full bigger plan eventually anyway.

[PapayaRafter]

I had a feeling this was going to be the answer. I can neither drive nor currently afford a house so I think what I really need right now is one that can handle the outdoors. Nothing so huge that it wouldn't get into the apartment but it wouldn't need to be able to go in a car or fold or anything. If even getting something like that into an apartment is going to be impossible, I think I'm just going to have to hope everyone doesn't get sick of driving me for a few years. Probably makes sense to wait at least until I know if I'm going to need fusion surgery anyway. Thanks for the straight answer.

[Burgerman]

Heres your problem. The ride and the stability in a powerchair is crap. We are basically driving around on terrible surfaces and angles in a short, narrow thing. Its top heavy.

So a chair thats less crap outdoors is a little wider, longer, and uses bigger wheels & tyres, larger casters, all for stability and a reasonable ride and to carry the real weight of suspension, bigger batteries, and larger more powerful motors, control system, and wiring etc. The whole chair if its any good outdoors cannot fold and is bigger and heavier than what you are considering. And you wont be lifting it. So you may be better with a scooter for outdoors use only. But somewhere along the line you will need to revert to plan b. One way or another you are going to have to find the money or some way to fund a bigger joined up plan.

Things like this are no substitute for a proper powerchair outdoors. They work on flat surfaces like a shopping "mall" and are foldable and go in your car. They are slow, unstable, and lack range, comfort etc. https://www.google.com/search?q=folding ... 73&bih=577

[greybeard]

Don't get disheartened. There are options available to you, some of which Burgerman may not approve (He is enormously knowledgable with strong opinions) but yours is a situation many initially find themselves in. You need to start with baby steps until you have explored all the options.

If you have, say, $1000 available to spend, look on eBay and other similar sites and search for "electric wheelchair".
You will find many used but serviceable powerchairs available. Buy one that you think may suit and try it out. Or go to mobility dealers and try other models to give you ideas, then try to find a used similar model on eBay etc at a price you can afford. Don't spend a lot until you get to know the market. If you intend to keep a particular chair, don't forget to budget for a new set of batteries. They are usually required.

If your first choice is no good, sell it on ebay and try again until you strike lucky. Keep doing this if necessary until you find something that you are really happy with. All the big brand chairs are adjustable so any could usually be made to fit you comfortably. You can download manuals etc from the web. You will very quickly find what you prefer and there are often real bargains to be had if you are patient - after you've found the first chair that lets you get out and about to explore the market.

As soon as you are able, aim to acquire a second chair as a backup to prevent you being housebound if there are problems with the other. Read as much of this (Burgerman's) site as there is no better place to find information on powerchairs and always ask for advice if you are unsure of anything. Lots of knowledgable people here who will be glad to help if they can.
Hope this helps.

[PapayaRafter]

Super helpful. That's a good idea. My transport chair has definitely given me some information (somehow until I bought that, it didn't occur to me that I would need to consider the cushion when determining measurements. And sagging upholstery is a major problem for me) so even if I do tons of research and go to a showroom to see what various power chairs feel like, I'm probably going to miss something. I should probably sell some of my many failed cushions (in general, not just for the transport chair) on eBay, too, now that I think about it...

[Burgerman]

Cushion needs to be the right width and length for you. It needs to be the right TYPE too. Theres hundreds and depending on needs can cost hundreds. Most proper full sized powerchairs are asjustible for length, width, CG position, dump angle, footplate position/length etc and all needs to be set up to suit you.

Also pneumatic tyres, and casters offer a better smoother ride than flat free tyres. And the bigger the tyres the better if you want a decent ride even without suspension. And batteries. Again the bigger Ah the batter as they last a lot longer if say 75Ah and give good outdoor range too. Less than this tends to be an issue on anything that is faster than 4 mph. Try to get a chair that has R-Net control system, or VR2 if possible. Because it wil be esier to reprogram so it steers properly. 4 pole motors are better that 2 pole. And suspension on the main drive wheels saves your spine from a pounding.

Keep all or this in mind when looking at chairs. And you are in the US so will be limited to front or mid drive chairs for some reason. Pretty much. I prefer rear drive for outdoor use for many reasons.

[Burgerman]

You are looking at something like this at one end of the spectrum (with all the power/outdoor equipment etc) plus seating options.

viewtopic.php?f=2&t=7455&start=600#p122818 Scroll
Or... viewtopic.php?f=2&t=10062
Picture of my newest one download/file.php?id=14813&mode=view


And the type of folding portable chairs you already are looking at at the opposite end of the spectrum. And everything in between. Like https://www.aliexpress.com/item/1000005118562.html

Only you can decide in the correct compromise. Esp if you are limited to narrow doorways and lack of space and tryig to get it into a car. I use a minivan, lowered floor etc. So the huge 185kg chair weight plus me, isnt an issue. Thats 3 or 4 times the weight of a folding chinese shopping centre chair. So its all up to you!

[Burgerman]

Properly accessible van isnt cheap. But look after it and they last. This one was registered in 2006 and is as good as brand new. Just got a carpet fitter to stick a cover carpet in it. viewtopic.php?f=3&t=7835

This is what I mean when I say you need a plan for the future. Yes cost is a thing. Being disabled isnt cheap. You need somewhere suitable to live or many changes to make your own place accessible. If its a sensible choice. And so space for electric beds, carers in the future, full sized chairs, and a vehicle that allows a full sized chair will give you your life back. There must be charities or government help avaialable there of some kind?

Because short term fixes may do for now. But its not a real plan for a adequate or secure future with some good standard of living. You might not even need a van if you lived in a town or city somewhere flat and accessible with wet room etc. For entertainment (pubs! ) or cinemas shops etc.

[PapayaRafter]

You're definitely right about the longterm. I think the next year will give me a lot of information about what to plan for. I will probably either have had fusion surgery for my neck or succeeded to some extent with PT, which has implications for driving, although not sure what yet. Until like 6 months ago, my lower body was the better half. I guess it still is but before, walking was my main mode of transportation. I definitely think the grand plan involves an accessible single-story house. The big question mark is the driving.

I'm thinking you're right about the mobility scooter. I think there are three main considerations. One, getting in and out of the apartment (I measured the door width at 35.5, but I need to remeasure when my cat is busy and won't dart out...). Two, handling sidewalks and some amount of incline (according to a route planning tool on the internet, the steepest part is 7%. I guess it makes a bigger impression because my mom's house is right at the exact top of the hill). Three, the tiller needs to be close enough that my upper arms don't have to flex more than about 30 to 40 degrees (if my upper arms are parallel to the ground, my shoulders start slipping down. Weirdly, this isn't even painful until the muscles spasm up). Realistically, I can't really carry anything anyway (could probably pick up something 20 pounds if I had to). Given that I can't drive right now, I don't actually need this to fit in the car. If I'm going in a car, someone is driving me, and they can just push me around in the transport chair. Thankfully I made the smart decision to pick an apartment on the first floor.

Anyway, this has been super helpful!

[Fusiongoat]

My aunt has Ehlers Danlos, but she was not diagnosed until she was in her 50's.
If your door to your apartment is 36" wide then it's possible your apartment is already accessible. Any apartment building built after March 13, 1991 with an elevator has to be accessible.
https://www.hud.gov/program_offices/fai ... ousing_Act
These guidelines are very specific and any power wheelchair will fit in an apartment that complies with the Fair Housing Act. If you live in a private house, though, you will have to pay for all the modifications yourself unless you have Medicaid in which case you should be able to get like $12K in modifications once. I live in a house but it is not necessarily preferable in America. If you have to modify your bathroom beyond the space needed for a wheelchair (e.g., modifying your bathtub) then that is not covered by the Fair Housing Act but your landlord has to allow you to do it, although you may have to pay to have it reversed when you move.

The easiest thing to do for getting a wheelchair is to decide on a few that you would be okay with and then look on ebay and Craigslist until you find one that is suitable. If your insurance won't pay for one there is generally no point in buying a new one, because the prices for a good one are too high. Also you should consider whether you will be able to drive a van. My aunt can't drive anymore, even though she can walk. If you live in a city with good public transportation you don't necessarily need to own a vehicle. I personally have never considered accessible vehicles to be worth the money, but our public transportation system is very good. Also, you do have to consider how suitable the weather is for a power chair before deciding if you really need a van. Accessible vans are extremely expensive.

[Burgerman]

Expensive yes. Initially. But we dont generally do many miles. And a few tokens to a pro valeter a couple of times a year and they stay as good as new for 20 years. So that really makes them much cheaper. Mines registered new 2007 jan. So its 14 years old. You would be hard pressed to tell it from new. Still drives and smells like new. Never seen salted/gritted roads. 10K miles. Waxed and valeted regularly. Runs a quietly as it did on day 1 and is still clean and shiny under the engine bay.

That makes it 30k brand new delivered complete with hand controls etc. Divided by its 14 years (so far). So 2,100 a year.
Never been serviced - just oil change every 3 years! Its only done 10k miles.

And cost that does not include the residual value. I still have a really good van to sell thats as new! Or to use as a deposit for the next one. So not expensive if you look after it. And keep it a few years.