There seem to be two basic attitudes towards wheelchairs and other assistive devices. The first, perhaps more common one, is that using a cane, crutches, walker, wheelchair, whatever is giving in, admitting defeat, letting the disease beat you. I do not share that attitude. I believe that not using these devices when needed is giving in — it’s allowing the disease to constrain your activities and to confine you. I am able to continue working and enjoying my life because I haven’t hesitated to use this stuff.
When I first realized that I wasn’t going to be going much of anywhere under my own steam, I rented an Everest & Jennings steel wheelchair with a lovely red vinyl back. It looked worse than the chairs you see standing around in hospitals. It probably weighed 65 pounds. the footrests stuck out a mile in front of me. I could barely move it. It was very sad. This thing was apparently the epitome of wheelchair design in 1945, and had barely changed since then. I was very glad when the attack ended and I returned the monster to the drugstore.
the next time
But alas, all good things must come to an end, and soon I needed a wheelchair again. I rented the monster again, but I also started researching.
First I found a web page (now lost in the mists of time) called “The Manual Wheelchair Selection Guide” (or something to that effect). It had a funky wrinkled brown paper bag wallpaper, and consisted of nothing except sportschair manufacturer logos. Kuschall, Eagle, TISport, Quickie, colours in motion, New Halls Wheels, Freedom Designs, Otto Bock, RGK … I started reading.
I get an education
A lot of these chairs look way cool. I want a way cool chair if I have to be a gimp! soon I realized that way cool was ok, but lightweight (ultralightweight) is where it’s really at. The rental chair at 65 pounds couldn’t hold a candle to a Quickie 2 at 27 pounds. But wait …there are two kinds of lightweight chairs, folding and rigid (they actually both fold).
the wonderful world of ultralight rigid frame wheelchairs
A folding chair (like the Quickie 2 or the E&J monster) has an x-brace under the seat so that you can pull up on the seat fabric and fold the chair wheel-to-wheel along its longitudinal axis. The x-brace adds weight, and some of the energy that you use to push the wheels is lost as it flexes. A rigid frame chair is lighter and stiffer, and all of your pushing momentum is translated into forward motion (yeah!). Most rigid frame chairs fold partway in that the back can be folded down over the seat, and the resulting package will frequently fit into the trunk or into the front passenger seat.
but wait, there’s more …
Modern lightweight chairs offer a ton of improvements over a hospital chair — low profile wheel locks that you don’t stub your thumbs on (think about it), small caster wheels that are tucked under the body of the chair so that you can get right up to tables and don’t have to worry about mowing down everyone in your path, a tight turning radius in just the space that the chair takes. You can also have camber (slanted wheels) for more performance and stability.
In my educational travels, I found some super non-manufacturer websites:
- New Mobility Magazine — who knew there was a magazine specifically for wheelchair users?
- Wheelchair Junkie — the ne plus ultra of wheelchair user sites. It’s primarily oriented towards power chair users, but has great info on manual chairs as well. Some of the best articles on WCJ are
- ICAN Online
- Eastern Paralyzed Veterans Association — great stuff, including links to information about the air carrier access act, accessible architecture and wheelchair maintenance
- Dalhousie University Wheelchair Skills Program – Videoclips
applying theory to practice
I collected lots of shiny sportschair brochures and went to see my neurologist. He seemed mildly amused at my new obsession, and gave me a referral to a physical therapist. She seemed mildly amused, too, and to make a long story short, basically told me that these chairs were for athletes, which as a middle-aged mom with MS, I am not. So I went all by myself to a wheelchair store and got a little bit more encouragement and information, and finally I gathered up my courage, got measured, and ordered a Quickie Revolution, no armrests, fabric sideguards (mistake), shiny forest green paint job, quick-release mag wheels (I was afraid of flats; mag wheels are made of molded plastic with solid tires) and 4 degrees of camber. Then I waited for it to come.
(Mark Smith offers his take on the subject at How Onset Of Disability Influences One’s Wheelchair.)
how do you unfold this thing?
The Revolution is little different from both folding and rigid frame chairs; the back folds down over the seat and then the seat collapses down over the front wheels to make a very tight little package (“just like a stroller!” my friend Kristen said). After I had pinched my fingers a couple of times in the mechanism, I figured out how to use the chair’s own weight (22 pounds!) to fold itself and sling it in the trunk. The seat turned out to be a little too wide, and combined with the camber, there were plenty of doors I couldn’t go through. But it rolled like a dream! It was like driving a sportscar instead of a truck. It was wonderful.
I learned the joy of smooth floors (linoleum rocks, carpet sucks), how to choose bicycle gloves (get the kind that have reinforcing between the thumb and forefinger, and buy them tight, so they don’t slip), and working hard enough to feel the burn in my triceps. Having the right wheelchair made it possible for me to continue working fulltime, because I didn’t wear myself out getting to, from and around at work. It made it possible for me to keep doing stuff with my family, going to soccer games and swim meets and everything else in between.
in the groove?
I got a second Revolution; the new one was two inches narrower (I lost some weight and the old one was too big anyway), had no camber (I miss it, but I can fit through more doors), had spoke wheels (for some bizarre reason I’ve never gotten a flat), and a good cushion. When I got the wheels I went to a bicycle store and a very nice guy who is actually a physical therapist (sadist!) helped me buy some tire levers and a co2 pump and made me practice pumping up my tire (sadist).
Turns out that the Revolution, while an interesting design, is not the last word in light and rigid. I lost more weight, and bought a Quickie GPV (2 inches narrower yet!) to use as the upstairs wheelchair (see my home modification page). At first I thought I’d just get a depot wheelchair (as the chrome hospital monsters are called), but I checked prices and found that the GPV could be had for the same price as an Everest & Jennings Metro, it could function as a backup chair for everyday use, and it wouldn’t have those stupid footrests that stick out a mile! The GPV is great — much lighter than the Revolution — but difficult to get into my four door car because of its box construction.
My current chair is a Top End Terminator Titanium. It’s lighter still than the GPV, has a 90 degree front rigging, so it can do tighter turns, and has 2 inches of dump (this means that the back of the seat is 2 inches lower than the front, for more stability in sitting). After a miserable week in Colonial Williamsburg learning that old bricks are very hard wheeling, I also got Frog Leg front castor forks, which provide some suspension and make a big difference on rough terrain. Finally, I got tired of friction brake locks that were constantly slipping and needing adjustment, and got D’s Locks instead – they are seriously wonderful and really lock the wheels.
finding a good home for an old chair
Wheelchairs have practically no resale value, especially if they were custom made. I found good homes for my two Revolutions via WheelchairJunkie – both went to folks who planned to cannibalize or otherwise extensively modify them. I sold them for the cost of shipping. Mark, in his article on buying used wheelchairs, put it well:
If you have a wheelchair you don’t need, give it to someone who needs it, or sell it for only a few hundred bucks. Lots of people need a quality chair but can’t afford one, so if you’re in the position to help a fellow wheeler, do so. Money doesn’t last; however, good deeds continue on forever.
The first wheelchair is kind of like the first pancake — it’s not going to be exactly what you need, because you don’t know enough yet. This is a damn shame, considering how much the things cost. But there’s nothing to be done about it; you need to learn as much as possible about your needs and your choices, but don’t be paralyzed by indecision — pick something and get going. In using it, you’ll learn a lot about what you did right, and probably something about what you did wrong, and you can apply that knowledge next time.
Thanks… I really enjoyed reading your article… well written. Why is it that doctors “smile” at us and say silly things like “that’s not for you, it’s for an athlete” — therefore implying that you just need to “get by” with something that just makes life harder for you anyway… well anyway, thanks for your notes. -J
Great post. A metamorphosis in front of my eyes! From newbie to experienced wheelhead. Interesting getting the insights on how someone finally realizes that “things don’t have to stay the same”. Enjoyed it immensely!
This is the story of a journey in more ways than one…Some useful resources in this post too.
You might be looking for a lightweight tray that is easy to carry? My wife uses a quickie and she designed one. Let me know if interested.
I decided to take a look at your website before I sent you a request for information on travels in Italy. Very impressive and interesting
Thank you, Paul!