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Thread: Complete High Quad Perspective

  1. #1
    Senior Member Leo's Avatar
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    Complete High Quad Perspective

    This is not meant to be a poor me thread.

    It's an attempt to educate people about life as a complete high level quad, and I'll draw the line at those of us unable to drive.

    I've read in a few posts latley with comments that for one point out how high quads have more at stake when it comes to cures and some recovery can mean so much.

    My hope is more will understand and be motivated to get involed.

    For the first 25 years of being paralyzed I very rarley met another paralyzed person.

    And then we all had one goal Independant Living.

    I want people to think hard before they give the advice of accepting and moving on.

    So some of the things that suck as a high level complete c4/5 quad which I am.

    So many times eating is not enjoyable it's work and very messy.

    As someone talked about in sex relationship forum, dating- relationship is a forget about it mode.

    WINTER, if you go out more than 5 times a winter does not happen.

    When fun becomes work you tend to pass on the fun.

    After a while watching others have fun loses it's joy.

    If your blessed enough to have children the frustration of what you can't do is magnified. They need to come to you.

    Your friends are out and you are not, it's not thier fault it just is what it is.

    Employment, I wonder what the unemployment of high levels is, when it seems to me just surviving is a full time job.

    Looking at the simplest thing that needs to be done and know you can't.

    wanting to advance the cure/recovery and be limited in what you can do while most of those sci with the ability sit idally buy.

    i've met only one vent dependent quad while living in a nursing home, i would visit him occasionally to play a game of chess, when i went out while living there i would avoid going by his room to avoid feeling guilty for leaving him behind.

    I hope other high levels will add their comments in order to help people understand.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  2. #2
    I always said that high level injuries are a new form of slavery. You can´t control your life anymore. When you are ok, if your parents have a health issue or die, is very sad, but you can continue with your life normally without them. When you are fully dependant, you can end your life with 30 years in a nursing home with people in their 80s-90s if something bad happens to your parents.
    I have the luck to have a job, but this kind of no-life sucks anyway. You must say bye to love, to sex, to childs, to build up your own family, to independence,... Is very sad to see other people enjoying basic things that now are almost vetoed for you.

    It´s not a complain, is only the truth behind some of the high injuries.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  3. #3
    Looking desperately for any and all research that would restore upper limb function and seeing robotic legs, electric stimulation devices and mostly acute trials on the majority of major foundation's agenda.

  4. #4
    I don't think this was a poor me post at all Leo.
    You described things as well as I can understand, being the wife of a high level quad.

  5. #5
    Checked out some of the clinical trials going on ?

  6. #6
    Senior Member Steve's Avatar
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    C4 complete since 1991 here, no movement other than neck and shoulders. Life not easy. One day at a time since I was injured. At least, excellent health. I can't imagine my life without good health. So far so good on that side. Friends come visit me often. They return home and I m still quad c4. I thought they would find cure for many years, not anymore.
    Time for bed,, caregiver arrive in 5 mins..yearkkkkkkk
    Ciao

  7. #7
    Being a quad at any level is difficult...being a very high quad is surely difficult exponentially.

    All the best,
    GJ

  8. #8
    Hang in there guys! We have hope. There are actual clinical trials going on NOW! Hang in there.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  9. #9
    Ineedmyelin. Signed up for any trials ?

  10. #10
    Leo, thank you for the reminder of what life is really like for the high level injuries. We have to fight SCI from every front that we can possibly think of. I'm hoping with the Neuralstem ALS trial being completed in the cervical area with no problems that we finally have a platform to fight on for getting them into clinical trials also. Perhaps we finally have that argument on OUR side!!! I'm grateful for that success in the cervical region. I think we have a good shot at making our case and we'll keep trying!!!

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