AnonymousOctober 10, 2010 at 1:38 pm
This thread is for information and discussion regarding various mobility aids:
AFO’s, walking canes, crutches, walkers, rollators, wheelchairs, mobility scooters, lifts, ramps, etc.
If you want to share what mobility aids you use for GBS-CIDP, please post anytime. This gathered information will help us to make informed choices about buying, using and repairing these devices.
At present, I am saving up for a mobility scooter. It must be a model that can be used all-year round in Canada, outdoors on snow-ploughed roads and hills. Getting info and prices from the dealers can be very contradictory and confusing, so feel free to add your input about anything related to this thread.
AnonymousOctober 10, 2010 at 8:06 pm
Hi – I’ve been using an electric wheelchair (Jazzy1143) for about 8 years now. I have had some experience with icy conditions and don’t know of any set up that will overcome plowed roads and ice. I’ve considered ‘chaining up’ and give it a go but the chairs aren’t built for that. Scooters are just a smaller version of a wheelchair. There are lots of used chairs and scooters on the market so getting ‘something’ is not that hard to do. But like owning a car or a horse they require maintenance. I’ve developed a sense of where I can and cannot go, been places I probably shouldn’t have and got stuck in places that looked easy.
So here’s my plan… wheelchairs are fairly basic machines, operating with two electric motors, a gear box to transfer power, and a controller/joy stick … why not build one yourself!!! or at least get someone to one built it to meet your needs. I go in several directions on that: 1) my neighbor, ex-navy chief, patched up airplanes during WWII and I don’t think there was a machine he couldn’t build ~ he’s passed on now but you know, I think he could have done it to meet his needs. Being an ‘uneducated’ man he wasn’t aware of what he couldn’t do ~ so he just did it. Or we go to the College of Mechanical Engineering and convince them what and awesome project it would be to prototype the perfect wheelchair for Canadian winters – I mean the have chairs that go up stairs now and these guys know all the math. Another thought is a snowmobile with a sidecar to hold your regular chair until you can get to a spot where its OK to unload. The same thing could be done with a three-wheel motorcycle, instead of a seat you just drive your chair up a back ramp, lock it in and drive from the chair. Can’t be that hard.
I suppose there are some limits about where you can go with whatever you develop. I haven’t done these things but don’t have the need. If I did, I would. One thing I do want to do is set up a golf cart with a trailer that converts to a work bench, and lots of options for whatever project I’m working on. I live rural so I’m not talking about sidewalks and stuff, but my pasture and garden and barn and workshop. Gotta say though, physics rule, learned that from logging, but physics work both ways ~ forya and againstya, just got to figure it out, adapt and overcome. Works for me and I got the scars to prove it. How about a motorized toboggan – little hard to control maybe but what’s life without a challenge or two.
AnonymousOctober 11, 2010 at 1:45 am
Well BigTree, your post was certainly interesting. 🙂
I’m glad you are mechanically inclined enough to attempt projects like these, wish I was too.
Actually, we do have scooters made for Canadian winters, but they cost from $2,000 used to $5,000 new. Big 10 inch air-filled tires with great traction, 9 degree – 12 degree incline, so they can take the hills. We Canadians wait for the snowploughs to scrape the streets clear after a snowfall, and then we venture forth again. My little hand-cart with the big wheels used to be good enough for getting water and groceries, but I finally had to stop using it this summer because of the continual muscle strain and pulled ligaments since GBS. But since I quit using the hand-cart, I’ve experienced less pain, and more healing, so it’s been a blessing in disguise.
Instead, I’ve been using strategy, now that my brain has healed more. Indoors, and in my yard, I use my walking cane. Outdoors for errands, I use my rollator; I can fit 1 jug of water in my rollator, but the wheels are very small, so can’t use it in all weathers. Can’t go too far, too much foot & leg pain, so the little seat on the rollator is very handy for rest-stops. I dress warmly in winter, so even if it takes me a while to get anywhere, I don’t freeze. I plan my errands in advance, so I can handle the demands of time and effort they will cost me. And I stockpile for the winter, so I can minimize heavy loads then.
One instance of strategy: my new neighbour blocked off access to the garbage racks to create a safe area for her child, so now I’ve had to find an alternative to dragging a garbage can through that area into my backyard whenever I need it for my leaves and garden refuse. That really bugged me for about a week, but then I thought of a plan. I could still use the hand-cart, just put a big garbage bag inside it, and fill it with leaves and refuse, and then wheel it around the building area to the garbage rack. And that would actually be easier on me than dragging the full garbage cans, as I used to. Life these days is all about finding ways to cope with the difficulties and challenges of daily living.
Often, I just feel so trapped in my own small radius of mobility, and the pain is hard to take when I have to do my errands on foot all the time. I used to go hiking and biking, and really miss the park and the river and hills. I’ve managed to make it there with my rollator the odd time, but it was quite a long and painful ordeal. I haven’t had a vehicle for 15 years, and there isn’t anybody to call on to do things for me (we do have Seniors Organized Service in town, but it’s very costly). It comes down to a matter of making do and doing without.
So I’m saving for a good used mobility scooter that can handle the winter and the hills to the hospital and park. It has to be able to transport a 25 lb jug of water or groceries. In the meantime, I’m studying the info on the dealers websites, so I know the specs of the models. I think I’ll get a 4-wheeler for stability, large air-filled tires for traction, 9-12 degree incline, hand grips that aren’t too difficult to operate. I was considering a scooter that comes apart and can be stored indoors, because I’ve been told it’s too hard on them to be stored outdoors in winter. Mostly, I’m afraid of buying something with a defect that will give me no end of trouble, so I’ve been reading some of the online manuals, to give me details. At first, it was all Greek to me. But I’m gaining a better understanding now.
I’m not interested in accepting assistance with the costs; so I’m not looking at community organizations or the system for any help (as if they would anyway). No bureaucracy for me. I’ll pay for it myself. Strangely, GBS-CIDP has actually made me even more self-reliant. It has made me feel more alone, but I don’t mind it. I don’t want or expect anything from anybody, and am content this way. I don’t live by other people’s ideas of what life is all about anyway.
I’m just glad that there are mobility aids these days, because in former times, people only had a walking-cane, and in modern times maybe a wheelchair, and if that wasn’t enough to meet their needs, they were confined to their homes or beds.
Sorry this post is so long; but this thread is all about our coping strategies, and use of the mechanical devices and mobility aids at our disposal. And instead of just feeling frustrated with trying to meet the demands of living with our damaged bodies, any strategies and ways and means we can come up with and share with each other can give us encouragement and empowerment. Bye for now.
AnonymousOctober 12, 2010 at 11:44 am
Interesting, I was just wondering what a small 4-wheeler ATV (all terrain vehicle) would do for you. We have a large 660 Yamaha Grizzly in the garage that my son & husband use for hunting season, & in the winter months my husband has a plow for it. I have never driven it myself, but it certainly works well in the winter months for getting around. Maybe you could find a smaller used 300 ATV to get around? My husband said Canada makes the Ski-do & Bombardier, probably a lot of used ones around?
I still use a shower chair to shower, take a transport chair when there will be a lot of walking to do, & have to wear AFOs & a cane to walk. Up in the garage, I am storing my manual wheelchair, my walker, my commode (also could be used to slide in & out of the shower.) Up at the cabin I keep my other commode in the porch, so I don’t have to walk to the outhouse at night. My powerchair I primarily use as my computer chair now, but will use it for walks around the neighborhood in the non-snow months. I keep all of these, in case I ever start to decline. BTW, my insurance paid for all of these items, except for the transport chair, which was $150. I sure can’t complain…
AnonymousOctober 13, 2010 at 12:12 pm
Thanks for your post; you’ve sure been through a lot, and I really hope your former mobility aids can remain in permanent storage. Do you get out much?
In Canada, we can’t use ATV’s on public roads; they are for off-road trails and areas, same with snowmobiles in the winter-time, and must be transported there by truck. Everything is regulated, and even regular 2-wheeled scooters can’t be used on highways.
Medical mobility scooters (3 or 4 wheels) are supposed to be used on sidewalks only, not on roadsides, but the sidewalks in most towns and cities are so rough and uneven, that you can’t use them on most of them. In the winter (November to mid or late April), many sidewalks remain unploughed and unscraped; there’s just a footpath through most of them, so we can’t use them on the sidewalks for sure then. So I’m thinking of getting a mobility scooter that can handle the road-edge pavement. Lots of people in my town use them on the road-edge and so far, no complaints from the police. You just have to watch out for the careless drivers.
Speaking of which: last week, I was pushing my rollator on the side of the road (no side-walk there) to get water, and there was a car warming up its engine in the driveway next to me. The driver heard my rollator wheels clattering, just glanced at me, and proceeded to back up into me. I wasn’t able to jump out of the way, and it was only inches from me when it finally came to a stop. They really stared at me, as if it was my fault for being in their way, when really they were backing up when it was unsafe to do so. This has happened to me 4 times since I got GBS three years ago, and I get the feeling each time that these townspeople are actually testing me to see if I really am crippled. From now on, maybe I’ll just take down their license plate number and call the police to report them. 😡
I’ve noticed a rise of this sort of attitude, or maybe it’s been there all the time, and it’s only now that when I’m more vulnerable that I’ve noticed it. Travelling on the Handi-Van a few weeks ago to shop in the city, I took along my rollator and cane as usual. The Handi-Van is equipped with a wheel-chair lift, and the signs on the two front seats state that they are designated as handicapped seats. Of course, the people sitting on those seats were not handicapped in any way, and those with walkers and canes had to struggle past them to the back seats. One time I ventured to ask one of those passengers if this was still ‘Handicapped Seating’, but all she did was say I could sit next to her. I had too many bundles to do that, so went on to the back of the bus. 🙁
Life is more of a battle than ever these days, whether it’s the grocery clerk that closes the door in your face as you struggle to open it with your groceries piled on your rollator, or the people that stare continuously at you because you use mobility aids, or the impatient, cross, people that just don’t get it that you need more time to walk through a doorway or just anywhere.
But if they live long enough, sooner or later they’ll know the same things we do. :rolleyes:
Sorry my post is miserable; I got insulted at my local store when I was using my coupons to buy my groceries there yesterday, and it’s still bugging me. Gotta put it past me, and focus on other things to get happy again. Think I’ll turn on the music for awhile. Bye for now, and God Bless!
AnonymousOctober 23, 2010 at 12:06 am
Just an update about a mobility scooter.
Just lately, two people…my sister, and a stranger from my coupon-club have offered to help me pay for a mobility scooter, but I declined. I decided long ago that this is something I really want to pay for myself, because when I finally get behind that wheel, I want to feel like I truly own it, and that in spite of the GBS/CIDP I was able to figure out my problems and meet my own needs. I’m trusting the Lord to help me to keep on saving up for it, and to help me to find the right deal at the right time.
BTW, I am also continuing to walk a bit better. And a few times now, I’ve actually jumped up from my chair without my cane, like I used to do.
(Who cares about etiquette???)
My heels still hurt badly; but my vocal chords have been improving slightly. Have been stockpiling for the winter, and have to oil my rollator wheels. When I think of all the water and groceries and other stuff I’ve carried on my rollator for the past 3 years, I’m just amazed; it’s been a real Godsend. And it only cost $10 at a yardsale; old and worn but tried and true and a tremendous help, completely dependable, except for those small wheels. I’ve even wheeled it up to the hills to pick berries, and it’s lightweight, so can be easily managed, except in snow.
Had a chance to try out a new rollator a couple of weeks ago at the townwide yardsales, but found that the center-of-balance of the carrier basket was in the front of the rollator, not the middle, so the wheels were always getting stuck whenever they came to a curb. Also, that one had no solid back-frame (just a back-support strap), so couldn’t be tilt-lifted over a curb. The people who make these designs need to actually try them out, don’t you think? Here’s a disabled person trying to use one of them, with water or groceries in the basket, comes to a curb, the large wheels won’t even rise over a 2 inch bump, no solid back frame to grip and heave the walker over the edge; so even an able-bodied person would have a terrible time handling and lifting that beautiful, but heavy and poorly-designed rollator.
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