Getting a wheelchair with Ehlers-Danlos Syndrome

In light of Ehlers-Danlos awareness month and having more and more friends with Ehlers-Danlos Syndrome getting a, or considering getting a wheelchair, I thought I'd share my experiences and advice on wheelchairs in this post.
For many, getting a wheelchair is a big thing, and many see it as a failure, as if you're giving up.
Getting a wheelchair is NOT a failure! Getting a wheelchair is a way for you to fight back against your condition, a way to get out of your house more, a way to participate in more activities that you've had to skip due to it requiring more standing and walking than you can handle, and it's also likely you'll suffer less pain afterwards in a wheelchair than on your feet. Now, how's that failure?

I have had my wheelchair for over a year now and I use it as soon as I go out of my apartment which is almost every day. Thanks to my wheelchair I'm able to go places independently, I can go to the supermarket on my own without relying on the car unless I need to buy more than a backpack can hold, I'm participating in social activities both in and out of town, I can be a bit more spontaneous and just go to a mall or something whenever I feel up for it as I don't need to worry about whether there will be places to rest or not, I have my own comfy seat under my bum already! And in fact, since my wheelchair is set up just for me, it's the only upright chair I can sit in for a somewhat decent amount of time without getting too much pain.

So, I've had my wheelchair for little over a year, and while I obviously don't have the same wealth of experience as someone who's been a chair user for many years, I do have a fair bit of experience by now and I try to keep up with the current models and development when it comes to wheelchairs and the all important accessory for it: the cushion.

Getting a wheelchair with Ehlers-Danlos Syndrome can be a bit special as we have our loose joints to keep in mind as well, both here and now and down the road. Some people with Ehlers-Danlos Syndrome manage just fine in a manual wheelchair for a long time, others may need electric assisted wheels instantly or a short while after getting their wheelchair as self propelling may be too rough on shoulders, wrists and hands. I belong to the group of people doing fine with a fully manual wheelchair and that despite my shoulders subluxing at times just by moving my arm the wrong way, and I'm completely independent in my wheelchair as long as the terrain isn't too rough, or a slope or ramp is too steep.

When you first request a wheelchair, you may be met by skepticism from medical staff and getting to hear it's counteractive to use a wheelchair. People saying such things clearly have no idea about how Ehlers-Danlos Syndrome works. For us, being conservative with our energy and relieving parts of our body often mean we can manage more. The one thing to remember though, is to still use your legs as much as you can as you don't want your muscles to atrophy on you. Don't get lazy just because you get a wheelchair!

When you're getting a wheelchair, it's important it is set up for your needs! Don't settle with one of those standard hospital chairs unless you're only going to use the wheelchair very little and/or always have someone pushing you in the wheelchair! But even if you have someone pushing you a lot of the time, you will still need a wheelchair that suits your needs for comfort and positioning, which again rules out a standard hospital wheelchair for most people.

So, how to pick YOUR wheelchair?

The most important thing when it comes to your wheelchair is its weight! You want a lightweight wheelchair, the lighter, the better! Especially if you intend to be independent in it and know you'll lift your chair in and out of the car independently as well.

The second most important decision you need to make is whether your wheelchair is going to have a rigid frame, or be a folding frame. Based on personal experience and reading, I'd highly suggest a rigid frame wheelchair unless you have to have a folding chair due to space issues in your home and car. A rigid frame wheelchair is generally more lightweight and sturdy than a folding frame and it's also more stable as you propel it. The more "stiff" a wheelchair is, the easier it is to propel and maneuver, it will literally follow the slightest touch of the push rims once you get the hang of it.

Footrests comes in different variations, and as with the actual frame, a rigid footrest will add more stiffness and stability to your chair and enhance its performance. If you absolutely need some kind of swing away footrest for transfers, many wheelchair manufacturers today offer a rigid footrest that can be folded up for transfers so you get the best of two worlds.

Taper or no taper? Taper means the wheelchair is more narrow at the foot plates, than up at seat level, having a wheelchair with a tapered front may be beneficial if you have a lot of hip pain and need help holding your legs together while sitting in the wheelchair, it also makes the chair a bit smaller and enhances maneuverability of the wheelchair.

Backrest comes in different variations as well. Go with what feels best for you, if you need a lot of positioning a rigid backrest may be the best choice for you even though it does add some more weight to the chair than a soft backrest does.

Accessories: DON'T GO THERE! Have as little extras on your wheelchair as you possibly can! The only accessories I'd highly recommend getting is side guards to protect your clothes from the wheels. And do get the anti-tip wheels at least to begin with, you don't want to flip over backwards. If you need push handles for a carer to push you, the flip down kind that's attached directly on the backrest of your wheelchair may be the most convenient compared to push handles that are fitted onto the chair with holders. But again, the less "crap" you put on your chair, the lighter it will be.

The push rims for your wheels is another very important choice you need to make. There's a wide range of different push rims available, aluminium, titanium, different diameter of the rims, with or without coating of rubber, plastic or color, ergonomic rims or just a round tube. There's a push rim for every need so choose wisely depending on your need and preference.

Cushion, another of the most important choices you need to make! There are so many different cushions on the market today. Air filled of different types, foam, honeycomb pattern, liquid/gel and so on. Don't just settle with a standard cushion if you have a lot of issues with pain and/or will be using your wheelchair for hours at a time. You need to sit comfortably, have proper positioning for your needs and even though us living with Ehlers-Danlos Syndrome aren't high risk for pressure sores like someone with paralysis, we still need to take good care of that bum and a good cushion will give you more time of being able to sit in your wheelchair before the pain gets to the level where you may need to go lie down. Which cushion is right for you is something you'll find through trial and error. I first had an air filled cushion with two chambers in it from Varilite, I now use a gel/liquid filled cushion called Jay Xtreme, and may ask my occupational therapist to get to try get another gel/liquid filled Jay cushion soon, or re-try another kind of air filled cushion that I did not like at all when I tried it the first time, but maybe I'll like it now? A gel/liquid filled cushion does weigh quite a bit more than an air filled or honeycomb pattern cushion. But don't let the weight of a cushion scare you off if you happen to find a heavier cushion to be the most comfortable for you. Sometimes comfort is worth a little extra weight!



How my wheelchair is set up?
Well, seeing my wheelchair is my first custom set up wheelchair, it is not exactly the way I want it as the occupational therapist who set me up with it had her own ideas about what was best for me, instead of listening to what I wanted. I have a lightweight active chair, and I do love it! But there are details on it that I will change when I eventually get a new wheelchair. I do not have a tapered wheelchair for example, not because I didn't want to have a tapered wheelchair but because the occupational therapist insisted I should have fold away footrests which at the time of my fitting wasn't available with tapered chairs and still isn't with the manufacturer that made my wheelchair. I have since had my footrests changed to a rigid footrest as I never folded up the footrests anyways and found that the fold away footrests wobbling under my feet as I was propelling myself or going over uneven ground. The rigid footrest is a lot better and also has my feet closer to the rest of my body, making my chair more compact and having my feet closer to me gives me a better position when propelling, enabling me to give a more effective push with less strain on my arms.
Initially I had push handles that were fitted with holders on the bar that's on the backrest of the wheelchair, but as I managed to be very independent in my wheelchair and never needed assistance, I had the push handles removed entirely after just a month, if I ever need help these days, I'll just have someone give me a slight push on the metal bar on the backrest. Not having push handles also shows people that I am independent and don't want them to push me around just because I'm in a wheelchair. Sometimes push handles can be seen as an invitation for someone to just push you around randomly and that can be extremely annoying if you haven't asked for someone to help you!
My backrest is a soft backrest with Velcro straps on the back so I can adjust the support in different parts of my back. The height of my backrest is about halfway up my back to offer good support and comfort.
When it comes to camber of the big wheels, I currently have a 4 degree camber making the base of my wheelchair a bit wider than it is up at seat level. I was told more camber would make the chair more maneuverable but I honestly don't know if it makes any difference other than size compared to having the (for my manufacturer) standard 2 degrees camber.
Initially I also had anti tip wheels as a lightweight active chair is very tippy until you get to know it! It didn't take long however until I had learned where all my sweet spots are and I no longer relied on having the anti tip wheels. I got my wheelchair in March last year, in July I no longer used the anti tip wheels (they were folded away under the chair) and by August I had them removed entirely. I've flipped over once since then, when attempting to jump up a curb that was too high and I had too little speed, but I knew in theory how to fall backwards so it was no biggie at all.
For push rims I have 19mm titanium without any coating on them, rubber or plastic coating can cause burns in your hands if you slow down while going down a slope and don't wear gloves. Seeing how my skin is very sensitive, I opted to go with a "burn safe alternative" so to say, and I went with a slightly bigger diameter of the rims than standard. Standard is 16mm but I felt that was too small, 19mm felt better in my hands and I like my push rim setup. I do well without having any grip improving coating on my push rims. I use leather gloves or work gloves at times when it's damp weather or cold and that works great!
The only accessory I currently have on my wheelchair is side guards to protect my clothes from the wheels.

For my next chair I will want the front to be tapered, partly to hold my hips together better and partly to make the chair even more easy to maneuver than my current chair and most likely I will go with just the standard camber rather than the 4 degrees I have now, I want my next wheelchair to be as small and light as possible, I will not have any anti tip wheels at all nor push handles as I don't need it, the footrest will of course be rigid on my next wheelchair as well. I may also opt for a slightly lower backrest than I have at the moment. The only accessory I'll have will be the side guards.



Weaning off the anti tip wheels:
I can not emphasize this enough, you WILL need anti tip wheels in the beginning! But try to not depend on them. Practice those wheelies until you can do it in your sleep and it becomes second nature for you to hold that wheelie. And practice curbs, both up and down. Just be careful trying going up high curbs, that's something I still haven't mastered even, see above where I mention my this far one and only flip backwards. Down a curb is easier as all you need to do really is go to the edge and go straight out landing on your back wheels or all four wheels. Once you've weaned off the anti tip wheels and go without, you'll find that your mobility improves more as anti tip wheels often get in the way when you need to jump up or down a curb, or "bunny hop" on your back wheels on terrain like grass.
To learn wheelies and how to hop curbs, I can highly recommend searching for videos on YouTube, there are many wheelchair users who share their tricks on there and it has helped me immensely!


Hope this post will help some fellow Ehlers-Danlos Syndrome fighters, and others who are about to get their first wheelchair. Sorry for it being a really long post, but it's a subject where you can't really take a whole lot of shortcuts. If you're in a country where you have to purchase your wheelchair out of pocket or with the help of your health insurance, it's even more important that you get a wheelchair that is right for you to begin with. Where I am, all I need to do is calling my occupational therapist and say that I feel I need a different setup wheelchair and I could get to change it completely as I do not own my wheelchair, it's owned by my region and costs me nothing. If I need to change wheelchair for one reason or another before the current chair is worn out, my current chair would just be set up for another patient once returned to the wheelchair center when I have gotten the new wheelchair. But unless I desperately need a tapered front, I'll just stick to this wheelchair as I do love it!

When walking gets tough, you just gotta keep rolling!