What's it like being in a wheelchair?

discuss symptoms related to arms, legs, torso and neck; solutions and what works for you

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Postby Lynne » Mon Mar 27, 2006 9:17 pm

I am no longer in wheel chair unless going somewhere where I would have to walk long distances, but do have an experience I would like to share.
When I was still working I was doing some private duty nursing for a quadraplegic. We went to pizza hut for dinner with his family. He placed the order for the pizza and when he was done the waitress turned to his wife and asked her if that was ok with her. At this point he got very angry, told her it was his neck that was broken, not his brain. And we all left resturant.
It is hard to believe how insensitive people can be.
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Postby marieke » Tue Mar 28, 2006 7:01 am

I don't use my chair often now, but was in it for a year and a half.
I've had the same thing done to me. I was out with friends and someone asked my friend if I would like something... she said, I don't know, ask her, she is right here after all!
I need a shirt that says "I'm paralyzed, not dumb" or "I'm paralyzed, not deaf". They actually exist, I saw some online...!
Marieke

(TM since 18/03/04)
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Postby Mary » Tue Mar 28, 2006 9:43 am

Hey Josh - are you still here? I have some questions and would like to email you, but you're listed just as a guest, so I can't.
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Postby Josh » Wed Apr 12, 2006 11:01 am

Sure Mary. My email is jstapen@hotmail.com

I look forward to talking with you.

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Postby granny1 » Thu Jul 06, 2006 11:28 am

I get a little upset with people when I am out in public. (I only use the wheelchair when I leave the house). I have had people almost fall onto me. About a month ago, I had a guy actually fall over my wheelchair, then he gave me a look like I shouldn't have even been there. I also have a problem with the restrooms. Some are too small to get a wheelchair in or even just manuver it once the door is shut. I also have a problem with SO many people using the handicap stalls when they aren't even handicapped. When I have to go, I just can't wait long. My daughter says that she's a lot more aware of those things now taking me into bathrooms, which I am glad she wouldn't do that to someone. Anyone else have a problem with waiting to get in because someone that is in there isn't handicapped?
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Postby marieke » Thu Jul 06, 2006 2:55 pm

For the bathroom issue, I barge in front of everyone and the minute it is free I take it. I have gotten some rude comments and stares. To those who say things, I respond by telling them that they can fit into ANY of the stalls, whereas I only fit into ONE!
I have also had to get security to kick people out of the handicap stall, they were just hanging out in there, one lady was doing office work! And even after I asked her how long she'd be and that I was in a wheelchair she still didn't get out, I then got security!
People just don't get it, not all, but some are really rude and just plain dumb. I have gotten tripped over and fallen onto as well. People will try to step in front of me and are surprised when I run into them! Hello, I am in a chair with wheels! Of course I'll hit you, I don't stop that fast!!! I also don't like those who try to barge in front of me in order to get onto the elevator. I have actually told people to get off when I had tried 3 times to get on and it was FULL of people who could have very well taken the escalator.
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What it is like to be in a wheelchair

Postby lol1969 » Wed Aug 16, 2006 1:48 pm

I have been in a wheelchair since 1992 due to TM (T8 level). Even though I have adapted pretty well to some extent (I work and attend graduate school) I still can't help but get somewhat bitter and frustrated over the treatment that I receive from society in general. I work part-time as a cashier and frequently experience problems from customers. Some customers wonder aloud what "people like me" are doing working there, many question anything I do since they feel that I'm mentally slow, many customers ask me to get books down off of shelves that are seven feet high (when there are plenty of able bodied workers who could do it), several customers have told me that I am lucky that I can sit on the job, and one even told me to get out of my chair so she could sit in it. As for issues pertaining to being out in public (elevators, handicapped stalls, etc.) don't even get me started. But I am glad that I found this forum because it is great to be able to share experiences with people in the "same boat". Thanks.
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Postby karen c » Mon Jan 29, 2007 3:14 am

i mary
ive had tm for 7 years now ive used a manual wheelcair they are hard work, i have got a electric one now that better
, you asked whats it like being in a wheelchair its hard you feel like you have lost everything life is not worth living, it has took a lot off time to appreciate my wheelchair that now its apart of me its my best friend without it i could not go around the house or go out with my family or freinds.you come across many difficults when you go out but i now that if you have a problem its up to you to sort it out." eg" i went to a shop i could not get to an item off clouthing has the racks were to close togetter so i asked the shop asstent if she could move them for me so i could get to them. 7 out of ten they will or if not thay will go and get the item for you to see. my legs dont work but my mouth still works. The best advice i can give you is to go out in a wheelchair and see for yourself. first time take someone withyou hope this helps lol karen c
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Postby kanga2433 » Wed Jan 31, 2007 2:06 am

I do this the other way round in supermarket queues. As people around are complaining I say something like, "Well it pays to have a comfy chair in queue this long!"

That certainly gets a smile andbrightens things up.
Paralysed T6 and using SPC
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Postby KathyC » Wed Jan 31, 2007 6:22 am

I can't stand the people who park in the handicapped parking spots and either eat their lunch or talk on their cell phones. Or...it's just to run in for a minute! It is so rude! I am not in a wheelchair right now...I was in the beginning...but I walk slowly and sometimes have my cane. I would give anything to park a mile away and run to the store!!!
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wheelchair recommendations

Postby wvgreg » Sun Jun 10, 2007 2:22 pm

Hi. I was in a wheelchair for a year or so when I first got ill [in 1968]. It was a crappy, GI-issue chair, 'cause I was treated at a military hospital. Now that I'm in my fifties, I have started using a rental chair occasionally when I travel. Any recommendations on good lightweight chairs, especially folding ones? I also have a friend who is into wheelchair basketball so I may try that, too. Thanks.
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Postby Lynne » Mon Jun 11, 2007 6:40 am

When I decided to give up and buy a wheel chair hubby took me to a medical supply store where they had a variety of chairs in the store. They took my measurements then talked to be about what I wanted to do with the chair. Then offered suggestions and let me try out the ones they felt would be appropriate.
Not sure where you are located or if there is any place like that around you but your doctor should be able to offer suggestions.
You will also need to have to have a prescription at alot of places to get the chair fit to you.
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Postby marieke » Mon Jun 11, 2007 7:02 am

If you can get hold of an OT (occupational therapist) they can advise you, that is their job (part of it).

Good luck!
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
http://nurse-to-be08.blogspot.com/
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wheelchair

Postby wvgreg » Wed Jul 04, 2007 9:44 am

These are both great ideas. Thanks! I'm getting a script from my ortho's office and setting an appointment with a RPT at the medical equipment store here.
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Postby Mary » Sat Oct 27, 2007 12:14 pm

Hi All,

Since posting this originally long ago, I've started working again. I used to be in a high-paid, high-powered, meeting-with-the-VPs position; now I work part-time at the front desk for a community center for low pay and no benefits. Talk about humbling. The upside is that most of our programs are aimed at physically or developmentally disabled people. It has been a wonderful learning experience, as I now interact daily with people I might have ignored in the past. I know their names, ask them how they are, and talk or listen to their stories.

On another note, I have gone to see the Seattle Slam, our local quad rugby team. It's fun and if you haven't seen Murderball, you can get an idea of just how competetive and atheletic they are.

I also went skiing last year! with an organization that takes disabled on sports outings. I used my skis with outrigger poles. I will also try to get back on my snowboard this year! I was very inspired by several others who were on "sit-skis" because they're parapalegic.

So, maybe being forced to give up the power career wasn't so bad after all.... I certainly have different life, a different "self" and some days it's pretty darn good.
:D Mary
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