The Right Stuff (Part Two)
by Dean Kramer
August, 2008
Both links provide general information, not specifically for MS. So I propose to write about what I’ve found helpful (or not) with my MS with the caveat that MS is very individual. What has worked for me might not work for you.
Canes… I have had many canes from a beautiful (but useless) hand carved wooden one to a cane with 4 feet (called a “quad” cane) that was also useless while, additionally, being hideous.
Avoid beautiful, hand-carved wooden canes unless they are also very sturdy and stable. Many hand-carved canes have crooked shafts, artfully curved or twisted. My cane caused me to artfully twist my ankle when the cane wobbled out of true.
And quad canes? As with you and me, quad canes work best with their feet on the ground. If your feet are unsteady and the cane’s feet are unsteady, unsteadiness is maximized with unfortunate results.
The best cane for me turned out to be a heavy aluminum one with a flared bottom tip and a soft ergonomic handle. I have a pair of them for times when I need support on both sides. I also retrofitted them with retractable ice picks for wintry weather. The ice picks are very James Bond. I can pop them out for icy surfaces. I could also pop them out for self-protection, though I probably couldn’t handle both situations in the same moment.
And as for icy surfaces, I have Yax Trax, rubberized contraptions that stretch over my shoes. They have steel wire coils on the bottoms and allow for stability when walking on ice. After all, what good is it to have a cane that is stable on ice if the person holding it isn’t?
Next on the devolutionary scale of mobility assists come walkers or “rollators” as they are called. They, too, come in a variety from those with no wheels, through two-, three-, and four-wheeled types. Many of the wheeled ones have brakes and some even have seats allowng you to sit when tired. Almost all of them either come with baskets or can be adapted for a basket.
I have two walkers. My favorite is a three-wheeled foldable one with a pouch suspended from it for carrying (in my case) a small service dog. A basket attaches above the pouch and a tray fits over the basket making this a very versatile walker. It is so light in weight that I can fling it into the car one-handed if necessary (first removing the dog who is quite capable of linging himself into the car). This walker has brakes but no seat. The only issue with three wheels is that if your balance is very poor you may find yourself tipping. You have to be fairly steady on your feet for three wheels.
I also have a four-wheeled walker with brakes, basket and seat. The wheels are large and roll easily over obstacles, making it superfluous to straighten up one’s home (at least as far as things left on the floor). But the walker is so heavy and difficult to fold into the car that I almost never use it. However, if you need the stability of 4 wheels and have someone to help you (or good upper body strength of your own) a walker such as this might be a good choice.
Both of the walkers just described are less institutional looking and allow for more athleticism than the old standby, the gray walker with no wheels or two front wheels and rubber tipped rear legs. But, if you need a walker and can only get the old gray mare, by all means do so. Walkers are very helpful in taking stress off your legs and putting it, instead, on your arms and shoulders.
I use a walker mainly so I can keep in practice walking, keep my legs from further deteriorating, and negotiate situations where I really don’t need a manual wheelchair.
But I have a manual wheelchair that I use whenever long distances are to be crossed. If you have decent upper body strength, an ultra lightweight manual wheelchair is especially useful. This is especially true if you have been staggering along behind your friends feeling left out.
With a manual chair they may well be trotting along behind you yelling, “Wait up!” In addition to moving more gracefully an ultra light manual chair allows you to extend your partying time because you don’t get as tired.
Consequently it can be you saying, “Come-on, don’t poop out now. We’re just getting started!” While your friends and family, panting, desperately look for someplace to sit down.
I keep mentioning “ultra lightweight chairs” because there are 3 basic types of everyday chair.
The standard chair weighs upwards of 30 pounds. It is what your father’s Oldsmobile would be if it were reborn as a manual wheelchair. It comes in basic black and usually has arms and plastic composite spokes. It can be only minimally customized for your personal comfort. If MS fatigue is at all your issue and you want to be able to put a chair in the car and go, don’t get this kind. I had one at first and the other kids all laughed at me.
“Lightweight” chairs weigh between 25 and 30 pounds. I think of them as chairs trying to fool you into thinking you like them. These chairs come in colors (like the ultralights) and are somewhat customizable, but they are still heavier than people with MS can usually handle alone.
The ultralights range in weight from 15 to 24 pounds. With wheels detached via quick-release hubs their component parts are even lighter. They are fully customizeable and must be fitted to order. They have lots of cool (often expensive, non-reimbursable) options such as power-assist wheels, anti-shock casters, light-up caster wheels and beautiful spoke guards. And speaking of spokes, most ‘real” crips have wheels with metal spokes (like bicycles have) because they are lighter in weight and tunable for balance.
Though I don’t have any of the cool extras I mentioned, I do have an ultralight chair. I can load and unload it from the car myself. I fit in with the other independently mobile wheelchair users I encounter. I use this chair for long distance travel and vacations involving flight where a scooter might get damaged or be inconvenient to maintain. There isn’t much to go wrong with a manual wheelchair.
There is also a choice to be made between a folding chair or a rigid one. For people with MS who won't be in the chair 24/7 and need it mainly for trips away from home (myself included) a folding chair is the best choice.
Of all the pieces of mobility equipment I own, my manual wheelchair is my favorite because it never stops functioning (unless I do), it gives me freedom to move at a pace that is comfortable for me emotionally as well as physically, and it allows me to get more exercise than I can get at this point using my legs.
However, I also have 2 electric scooters, one of which is old and dear to me and the other of which has become increasingly useful and beloved.
My oldest scooter is what’s called a PMV (private mobility vehicle). I use it at home of my farm. It’s not that different from an ATV except it’s electric powered. I won’t discuss it here because it isn’t useful beyond its application as a workhorse. It’s too big for travel and insurance companies won’t get you one.
What insurance will cover is what the mobility industry has developed over the past few years—a lightweight travel scooter. Most of these are easily taken apart and loaded into a car trunk, tailgate, or van. But they almost all have their flaws.
Most of them have low ground clearance ranging from 1.5 to 2 inches. This makes them unsuitable for any surface that isn’t smooth and flat. Though rated for people weighing up to 250 pounds they have only 24-volt battery packs and solid steel frames. A person weighing as little as 150 can slow them down, run the battery down quickly, and make them balk at inclines of any rise at all.
I had such a scooter. It would not go up an ADA standard incline without cutting out. It cut out crossing department store thresholds. The fact that I could take it apart and load it in the car myself, without a lift of any sort, was of no consequence since I couldn’t rely on it to take me where I wanted to go. The motor finally burned out last November while I was attending an MS regional conference. It burned out while crossing from a linoleum floor to a carpeted one in the hotel where the conference was held.
Happily I had my manual chair with me, so my attendance was not interrupted. But it was embarrassing to be stuck sitting on the carpet in the lobby while people struggled to get around and past me. What is even more interesting is that another attendee with the same scooter burned his motor out, too, at about the same time.
The travel scooter that replaced it has a tubular frame and an open plastic deck, making it lighter overall. I can still take it apart and load it into the car but because of the lightweight construction that same 24-volt battery feels peppier. It goes up hills. It crosses trolley tracks. It handled a salt hay- covered beach on Cape Cod.
So if you are considering a scooter, go to a mobility equipment dealer and take a few test drives, even if you end up buying online (where prices are ALWAYS better). Make sure what you get (if you have any choice) will do most of what you need it to do.
If you have to get a heavier scooter to accomplish that, there is a wide selection of lifts for almost any sort of vehicle to get your scooter in and put of the sedan/van/station wagon. Insurance won’t cover a lift, but they are tax deductible with a doctor’s prescription. It is worth having one if it means you maximize your scooter’s usefulness.
People with MS have to be flexible because the disease changes so much from time to time. For the same reason we require a wide variety of mobility equipment choices. If you choose wisely, given whatever constraints you may face, you will almost always have an option for keeping on keeping on.
|
|
