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Thread: I am refusing!

  1. #31
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    Quote Originally Posted by tooley View Post
    How much is the surgery for that? I'd even put up with the gay little hat..
    I don't know about that kind of surgery but I know where you can get a sex change done for a reasonable price and medicaid used to pay for some of them LOL

    I always wanted to be Mary Poppins
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  2. #32
    Downside to the upright lurch with braces and a trough/platform walker for this quad? Repeated broken bones (hip, elbow, lower leg, ankle, foot), surgery to repair some of those from a fall, month in a nursing home to recover after the surgery, stitches and staples from the gashes made in falling, extreme pain, impracticality to have function/be able to actually do anything, pretty much stuck at home, overuse syndrome from insisting on being and staying upright at all costs.

    Not anymore. The costs of going vertical wore me out. Maybe it won't happen for you, SG, but you'll have to come to your own decision, your own conclusion.

    Going to the chair was not a sell out for me or this community. It made it so I actually have more of a life, can go and do things again. It's the freest I've been in my life.

    Being upright is not going to speed a cure. If anything, those who do it and struggle as I did will have little energy for anything, but being upright. Those who are like me and should just say no to the crazy proposition of all upright all of the time will not be able to go for fund and awareness raising. There will be nothing left.

    We each must choose our own way of being mobile in this world with these bodies. If upright works for you, that's great. For those of us who tried it repeatedly, who did it for decades to the detriment of ourselves, it's okay that we don't, too.

    I believe in chairs and in making the best choices and best decisions for ourselves, for each of us, without negating a good decision by another person.

    Hope you find what works for you.

  3. #33
    Moderator jody's Avatar
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    Quote Originally Posted by betheny View Post
    Been there, done that, 1 stolen crutch in nyc cured me. Walking for exercise, sure. Functionally? Not w my injury. If I stay in bed, I'll starve. If you stay in bed 2 weeks, you won't be able to get up w/out starting over.

    Talk to Bente, struggling to walk has taken a toll. Talk to post-polio ppl, we aren't much different.

    Think it thru, is all I'm saying.
    my first day in out patient rehab, someone stole my brand new arm crutches and replaced them with their rusty no rubber or padding or tips on them. It was a small rehab and the staff knew who it was, but I said forget it and got myself a new set and used them until they looked like the ones the guy traded for my new ones years before.

    anyway, to the original poster. you are mistaken about cass. she hates her pain. life has not been easy or even fine. lovely lovely person and not a hater at all.
    I really do hope it works out for you and not using wheels to get around. though if you do need a chair sometimes, don't feel like you are lazy or giving up about walking. As I said before I hardly ever use a chair. there are many here who use devices to be standing. there are some who can stand and walk some but have little use of their arms and upper body, so use a power chair with a joystick. I know we would all like to throw our hardware away.
    I imagine myself still riding half broke horses, or running and running. When I dream I see myself from the waist up and I kinda float or fly everywhere. I know that if I get sick and have end up in bed for even a short time, I lose muscle very fast. my ability to walk regresses. I have had to start over more than once. go back to a chair and gain strength again. no matter what you use to get around though, good wishes to you, and may your quest to be upright be successful.

  4. #34
    Senior Member marycsm77's Avatar
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    you know Jody, you're reply to the OP was really thoughtful, informative and kind. I enjoy reading responses like this. Just thought i'd let you know

  5. #35
    Walking with crutches, kafos, walkers, etc. is noble and well intended but in my practiced opinion very impractical. I tried like hell with braces and, as many have echoed, it was exhausting to even go down the hall 20 ft. And whether I like it or not (I don't), I can whip through the schedule and responsibilities of my life, just about as fast as an ab. I just do it with and on this seated bicycle that some may mistaken for a wheelchair.

    I get, as most here do, where you're coming from SG. You're frustrated, angry, and tired of being injured. "Refusing to use a chair" is your current mechanism of rebellion. Rebellion is good but you have to figure out the best way to channel it. You're young, strong, vibrant. Do you really think that going on a wheelchair strike by staying in bed is really going to accomplish anything? Don't you think you might be a tad more productive being up, moving about, going forward? Don't let the chair define you, you define it!

    To some here, myself included, saying that I wasn't going to use my chair would be the equivalent of me refusing to drink water again because I hate water and that damn aquafina, ...(insert your favorite brand name of water here ) company! Really? Seriously? Hey, to me, my chair may as well be water cause it serves pretty much the same function ~ it gives me life. It may sound a bit melodramatic (that was the intent) but in all honesty without the ability to get around you may as well buy me a casket, cover it with every casketmaker's sticker available and plant my ass in the ground because that's where I'd wanna be without the ability to move around.

    Count your blessings, as Eileen indicated, that you have the means to buy your 3rd chair in 5yrs, and roll with it. If you decide that you can make it work with crutches, etc. best of luck to you. My guess is your strike will last about 3 weeks and then the reality of being able to get from point A to point B in the most efficient way possible will far outweigh your desire to rid yourself of the (perceived) disabled moniker that is the dreaded...wheelchair.

    Onward and upward,

    Chris

  6. #36
    Very nicely put, Chris.

    It would be to see SG rejoin the conversation she started and reflect on the feedback it's generated.

  7. #37
    Moderator jody's Avatar
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    Quote Originally Posted by marycsm77 View Post
    you know Jody, you're reply to the OP was really thoughtful, informative and kind. I enjoy reading responses like this. Just thought i'd let you know
    thank you.

  8. #38
    Moderator jody's Avatar
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    my chair is busy being a cat bed.
    when I did need it to get everywhere, my katz would ether walk around giving me stink eye an looking jealously at my rolling kitty lounger. stalk me like furry vultures in order to be the first to pounce on in when I got out of it.

  9. #39
    Hi SpiderGirl,

    This is what the expert in para-walking says. First off, $10K for the KAFO leg braces! Wow. And I thought lightweight sportchairs were expensive. You may want to check with your insurance carrier to see if they cover KAFO leg braces. I don't think they'd pay for them without first having a Doctor or Physical Therapist etc. claim that they are medically necessary (or whatever the correct wording is) for you. As most people say after they get their braces, "they're in the closet collecting dust!". I (T-4 ASIA A) had a pair made up in 1980 for $3K. Vocational Rehab paid the bill. I made a set of parallel bars for them which turned into a clothes valet after a few months! It is amazing how tall you feel when standing/walking after you haven't done it in a couple of years. The ceiling looks so close!

    Quote Originally Posted by ParaWalk
    Are you eligible to enroll in ParaWalk?
    Take a look at the requirements below before applying to ParaWalk.


    --------------------------------------------------------------------------------

    Equipment Required

    KAFO Leg Braces

    Leg braces can cost up to $10,000 without insurance. Even if you already own a set of leg braces you are required to get a new set. Traditional leg braces are designed with only standing stability in mind and are very difficult to walk with. The leg braces must be built from the ground up to include some very important innovations in order to be optimized for walking and functional usage.

    Offset Canes

    A pair of canes cost about $20.

    Video Camera & Computer

    ParaTraining is an online training program and uploading video is the main method to receive feedback, and also help other members of ParaWalk. Participants are required to record, edit, and upload video multiple times a week. A high bandwidth internet connection is also required.

    Free Weights

    A pair of 5lb, 10lb, and 15lb free weights will be used daily and can be found at WalMart..


    --------------------------------------------------------------------------------

    Health Requirements

    Voluntary Leg Function NOT NEEDED
    ParaWalk is designed specifically for those who lack enough functional leg movement to walk normally. People with ASIA A Complete Spinal Cord Injuries can learn to walk in KAFO Leg Braces, and do it well enough to get rid of their wheelchair. This is made possible because of the the energy efficient walking technique taught at ParaWalk, as well as specially designed leg braces.

    Paraplegics with a T1 or Lower SCI

    ParaWalk specializes in KAFO ambulation for paraplegics only. Those who have Spina Bifida, Cerebral palsy, Multiple Sclerosis(MS), or quadriplegia are outside of ParaWalk's area of expertise.

    State of Health

    Participants should be at least 60 days post injury and in a good state of health. Pressure sores (Stage 2+), high blood pressure, excessive obesity, or any other major health/mental problem should be dealt with before enrolling in ParaWalk.


    --------------------------------------------------------------------------------

    Personal Requirements

    Large Time Commitment

    This program is not for the faint of heart and takes total dedication. Expect to spend 2-3 hours a day at a minimum. In general, more time spent will mean faster progress.


    --------------------------------------------------------------------------------

    Waiver of Liability

    Participants are required to sign an online liability waiver before training is started. ParaTraining is designed to be done at home with no supervision, and there is an inherent risk. Participants willl fall more than once while learning to walk and are likely to get hurt at some point. Participants are encouraged to talk with their doctor about the risk involved and take any required steps to ensure their own safety.
    I think it's a good idea to get up and stand and even walk everyday. But I wouldn't rely on KAFO leg braces as my main mode of getting around.

    Best of luck,

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  10. #40
    Senior Member fishin'guy's Avatar
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    Hey, a little heads up to all you who'd like a set of KAFO,AFO. Look up your local University and see if they have a school of prostetics. I've had 3 sets made in 2 yrs, they're dying for people who'd sit and be molded for the brace, then go in for adjusting and fitting for them. You get a choice of how they lock, and the style. Actually had 4 sets made, the students had to double up on me.They just don't have many people to get to try these.
    I gave some of them back to the rehab at the hospital, as they had piece of crap for me , now brand new set for someone to try and stand while in rehab, gawd I remember those days, foot too small, brace was off center.
    Anyway, it's a good way to help out new students, and get free braces, too.

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