At times it was tough keeping up with friends who were paraplegics or had no upper body paralysis, but that's okay. Sometimes I fell half a block behind or friends slowed up a bit to wait. There were incidents - like the time my friend Janet and I hit the hills at the San Diego Zoo. On the way down one steep hill, my lack of grip landed me into the bushes so she wordlessly fished me out. Going up the hills made me want to take the little shuttle bus. But I hung in there.
No matter how hard I've worked to keep up ,para-wannabe that I am ( I tape weights on, I diet, I handcycle with quad attachments, I play tennis with duct tape) I'm a quad.
Last week I was asked a series of questions, much like the ones in this article.
Things like: have you noticed you're putting off errands? has your social life diminished? have you been more tired? do you have increased pain? decreased mobility? less activity? Yes. Yes. Yes. I find myself turning down things to do because I'm so tired but it never occurred to me that it was because of - well - pushing- even though my arms are well - paralyzed.
And even now I think I should have frigging lied when they asked me those questions. But I didn't. I told the truth and I was told: get a power wheelchair. Just use it part of the time. After all , you're not more paralyzed. Nothing to panic about. So why did I want to roll screaming into the street?
It's not that easy a change to make, not only based on how I feel about it, but as a practical matter. Power wheelchairs are pricey, custom made and take time and money to get. And they won't fit into regular cars.
So today I bought a used Jazzy -that looks something like this- and I'll see how it goes. At least using a joystick will be fun.
[If you use a power wheelchair that you LIKE, leave me a comment. And if you LIKE using a power wheelchair, please let me know.]
By the way, here's a fellow who figured out a way to stay in his manual chair and use jet pulse to propel it:
uhhhh I think I'll pass...
13 comments:
I am a power wheelchair user and like it. I have a Permobil Street which is cool and goes over all kinds of terrain, off roading too. Get one of those and you'll wipe out anyone pushing a chair. I got detention one day for racing too fast in the school cafeteria. Quads rule!
Steve
I use a Quantum which is fast. Her name is Ophelia. I name all my chairs try doing that and maybe it'll grow on you.
Put some stickers on it. I've got flame decals I bought at an auto store on my red one. Looks very cool. Also make sure you wear a belt because going up and down hills you might slide if you're a quad. My chair goes 6mph but my next one I'm upping to 8.5 I took your advice about school and now I am getting better grades so I can go to camp this summer. Good luck with your new wheels.
My husband has a SCI and recently went to a power chair for work. We're in our late 40's and many of our friends criticized him (and me) for doing it but he's been able to do more and feels much better. At the time I told him to just think of it as a golf cart so he could save his energy for the hole in one. Give yourself time to adjust to the idea and I hope the people around you are supportive.
Karen
I wouldn't be too happy going to a power chair myself. Day will come when my shoulders poop out.
Argh would not be happy myself. I used a power chair when I broke an arm years ago and couldn't wait to get out of it. They do have better technology now. Good luck with it.
Let me tell you a funny story about the first time I used my power chair. I went shopping , came home from the mall, transferred to an armchair and decided to hit the joystick to back up the powerchair without being in it. The powerchair backed up all right - into the wall and my husband comes running into the room screaming "Turn it off!" And I'm screaming "It's gone wild!" because I had my hand off the joystick by then. There was no damage to the wall some paint couldn't fix and turned out the wheels slid on some of the plastic bags I tossed on the floor (we think). Now it's funny and I think it got all my fears out about using the chair. It also taught me respect for doing things the right way with it.
Good luck with that chair and make sure you stop by the Jazzy boards where other members can help you out.
Ellie
Yo after all the help you've given me I'm glad to offer my power chair expertise.
So check this out. Here's what I've done in one week in a power chair:
Gone through Disneyworld
Gone dancing
Gone to my favorite restaurant which if you must know is TGIF
Gone fishing
Went to school (bleck)
Gone on the trail with my brothers behind our house
Walked the dog (bleck)
Visited my grandparents
And more.
--
Here's what I could do in a manual chair now.
Sit there in one place. Sing. Blow bubbles. Read a book. Watch a movie.
--
anyone you talk to who's used one a while will tell you things will be A OK. So go rock and roll.
Thanks for helping me with that handicapped awareness thing at my school the kids dug it.
I got an Invacare Ranger and I'm happy with it. Look around and demo some before you buy a new one. Try them out in your daily activities so you know they fit in your house, work in your yard and other set ups. It's a huge adjustment because these chairs are tanks compared to a manual one and transporting them in anything but a special van isn't going to work. I use the manual when I go out with my husband and he pushes. We just can't afford a van so lucky I have him!
Sandy
A lot of the sisters here at the monastery have either scooters or electric wheelchairs because they can't get down to the Chapel easily. The few who can't walk at all like powered wheel chairs that just pull up to tables easily.
I tried to drive one once - the kind with a joy stick. I came across it in the ground floor hallway, ready for servicing, around midnight. A lot of sisters had rejected that one, saying it had a tendency to "fishtail" when they turned. I rode it down the hall and back. It took a LOT more skill than I had. And -- it fishtailed when I tried to turn. Felt just like a car on glare ice.
I hope you find one that help you have more energy for the things that you care about most.
Wow- I now have a list:
pick name for wheelchair
find decals, etc.
avoid running the chair when I'm not in it
pick objects up off of floor (What about the cat?)
try out the Permobil/Invacare models
and practice with the joystick before I hit the sidewalk....or anything/anyone else!
whew....
Thanks everyone for all your suggestions and support. :)
Changes are hard, I agree. Good luck with your new chair. I hope it works well for you so that you don't have to buy a newer, more expensive one.
I have to say, I've been reading your blog faithfully since I discovered it a few weeks ago. You are really insightful and humorous. You put words to many things I feel, and I take advantage of your perspective.
God bless!
Julie R. Oklahoma City, OK
Julie,
Welcome to my blog and thank you for your kind words.
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