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Thread: Medical Research = Quality of Life

  1. #1
    Senior Member Leo's Avatar
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    Medical Research = Quality of Life

    Most of you know my distaste of the organizations that represent us and
    their less than enthusiastic view/desire to advocate for cure/recovery
    based treatments legislation. I just can't get past it. WHY is always
    running through my mind and yet I think I know why and I think, How can
    you?


    Are you so ignorent and that selfish. Wearing blinders to the posabilities is not even a possable excuse with the prevelant media coverage of late.


    Is not recovery of sensation or some physical movment an improvment in
    ones Quality of Life? Of course it is, I've experienced a bit I know.


    Yet the CDRPA or SCREA is not even a blip in your agenda.


    A recent visit to WID's web site and reading a speech by Ed Roberts the
    grandfather of the ILM Independent Living Movment. After reading it I
    couldn't help but wonder what Ed would think.

    How can the people of a movment he started and people he thought so much of be this fearfull of what could come from medical research.

    Recovery research in the not to distant future allow vent quads to kiss them goodbye.

    Will free c4/5 quads like myself the freedom and ability to drive.

    Will give back to a T level injury the ability to piss/shit and get a boner like once before.

    Will allow a para the ability to father his/her own child as was ment to be
    and dare we think an incomplete injured the ability to be almost physically normal.

    Delivery of that my friends is a quality of life issue - and a DISABILITY RIGHT that all desirve.

    Yet it does not desirve your attention. WHY?
    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

    Thumbs up

    Quote Originally Posted by Leo

    Is not recovery of sensation or some physical movment an improvment in
    ones Quality of Life? Of course it is, I've experienced a bit I know.
    Nice said, Leo. I cant' agree any more.

  3. #3
    ITA Leo. The fact is that SCI is a degerative condition. I never quite got the care vs cure but whatever you do, you can't support both message. I could never begrudge those at the forefront of the disabilities rights movement because I have personally benefited from the laws they fought to have passed but I wish that wanting a cure wasn't the sin it's made out to be. I don't think it's such a bad thing for a high quad to support cure research because he wants to be able to breathe on his own.

  4. #4
    Quote Originally Posted by antiquity
    ITA Leo. The fact is that SCI is a degerative condition. I never quite got the care vs cure but whatever you do, you can't support both message. I could never begrudge those at the forefront of the disabilities rights movement because I have personally benefited from the laws they fought to have passed but I wish that wanting a cure wasn't the sin it's made out to be. I don't think it's such a bad thing for a high quad to support cure research because he wants to be able to breathe on his own.
    Sen,
    At the time the Disability Rights Movement started there wasn't any NEWS or RUMORS or anything or anybody out there telling Ed Roberts et. al. that a CURE was possible. AND there were many disabled then that didn't WANT to have independence. Or go to college..or go anywhere except where they felt safe and relatively wanted. The mainstream WAS NOT that place.

    And you really couldn't blame them. Or take away their right to live as they chose to live.

    I can assure you though that if the promise of cures and even rumors had existed Ed and others of the same mindset would have done all they possibly could have done to bring that to fruitation.
    Life isn't about getting thru the storm but learning to dance in the rain.

  5. #5
    Hi Lindox, I'm not begrudging him or any of the dis. rights advocates which I clearly stated. I was injured in 78, well before the ADA was passed, so I'm quite familiar with the rights concerns, attitudinal barriers and the views regarding the possibility of a cure then. What I'm referring to is the care vs cure debate which is still ongoing in light of the scientific developments over the last 15 years. Rehab. centers are still telling the newly injured that their injuries are permanent, they do not familiarize them with cure research nor are they encouraged to support it. They still hold to the belief that an SCI cannot move beyond the trauma of their injuries and support cure research at the same time. As Leo pointed out, very few have thrown their support behind the cure movement. I visited an SCI resource center about 4 years ago and there was still the belief that the cure movement was taking money away from care programs. We need care, forget cure, was the rallying cry of the early rights movement which is still being embraced today. Wise knew Ed Roberts, Ed was familiar with advances on the cure front, he didn't die an ignorant man. Yet advocacy groups continued to focus solely on care issues and ignored cure research. Supporting both won't hinder progress on either front. An investment in care only will keep the vent quad out of a nursing home but it'll never help him breathe independently. We need to invest in cure research for progress in the QOL arena as well. What Leo and others are saying is we can't understand why they don't get the simple fact that cure research will lead to QOL improvements too.

    Quote Originally Posted by Lindox
    Sen,
    At the time the Disability Rights Movement started there wasn't any NEWS or RUMORS or anything or anybody out there telling Ed Roberts et. al. that a CURE was possible. AND there were many disabled then that didn't WANT to have independence. Or go to college..or go anywhere except where they felt safe and relatively wanted. The mainstream WAS NOT that place.

    And you really couldn't blame them. Or take away their right to live as they chose to live.

    I can assure you though that if the promise of cures and even rumors had existed Ed and others of the same mindset would have done all they possibly could have done to bring that to fruitation.
    Last edited by antiquity; 05-16-2007 at 11:04 AM.

  6. #6
    I hate the care vs. cure debate. It's so stupid.

    ProfessirX has a version of the song "Get Up, Stand Up". He says "United we stand, divided we. Still. SIT!"

    So danged true. All the debate does is keep usdivided, and sitting, far too many of us alone in nursing homes!

  7. #7
    Sen,
    I didn't mean to infer that Ed Roberts are any of the IL activists were ignorant. BUT they too had naysayers that said what they were doing was a waste of time due to the way they saw the world. The same applies today to the disabled that don't SEE the cure as being capable of being done.

    I don't know what Dr. Wise told Ed Roberts.

    I DO know he died in the same condition well in worse condition then he lived physically.

    And so many have.
    SO..it's going to take alot of understanding on both sides of the debate to become united in efforts.

    Many realize it all may happen too late for them..BUT that doesn't mean they won't put effort towards the objective. I don't really think though they will unless they are assured that their care and the care of those that won't be cured is assured.

    If they only hear a barrage of negatives about how they are laying, standing, sitting in the way of a cure..they will then hold tighter I think to what they have become accustomed to. CARE. Knowing as you become even more of a minority you will loose if you don't fight.

    They NEED assurances that care will not be affected by cures. That they won't become invisible and have to return to the same fight that already was fought and won.

    I think we can do that.
    Life isn't about getting thru the storm but learning to dance in the rain.

  8. #8
    Leo well said!
    i don't get this care vs. cure thing. when in doubt choose both- right?

  9. #9
    Senior Member
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    IM or for the cure... I did the nursing home thing over four years finally built a house accessible. Trying to teach those people how to help cough a quad making sure push fluids to prevent utis... it was stressful. It's still stressful trying to find people to help you at home. Let's get a cure here and now. Don't know what you have until it's gone...
    keiffer66

  10. #10
    The fact is that SCI is a degenerative condition.

    Posted by Antiquity
    Thank you Antiquity. As an able-bodied parent fighting for his son's future, it is this unspoken reality about SCI, that goes unperceived by the public. The assumption I keep running up against is that SCI is static and does not progress like MS or Parkinson's. Too many people think an SCI person is such and such a level with such and such deficits. You identify them, do some work-arounds and go on with your life. How simplistic...

    SCI does progress and degeneration is in evidence with things like learned non-use and predispostion to diabetes and cardio-vascular disease. Cure research is the way to go, particularly in the current social environment. Our country may have the ADA now (Thank God ) but social programs in this country are collapsing from overload and lack of political commitment to maintain established care programs.

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

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