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Thread: What does, "It's not about a cure. It's about quality of life." mean?

  1. #31
    Junior Member
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    Quote Originally Posted by JamesMcM View Post
    SO true!! It literally is, bahaha. A lot of times they think they deserve respect JUST from simple fact they live with a disability, really please.
    Fuck you!

  2. #32
    Quote Originally Posted by Nowhere Man View Post
    It's something about that culture up north. Canadians (not all!) tend to be brain washed into liking their disability, or at least complacent with it. They think they are cool. I am embarrassed for them.
    I did my rehab in Vancouver, B.C.. None of us were brainwashed into liking our disability. We were taught that a cure was not happening presently and would be years and years off, if any, so maximize your abilities and get on with life. I would rather be told the truth than have some rainbowed view that in 5 years, 7 years I'd be up walking again. I wonder how many out there are languishing at home wishing and not doing anything to be ready if there is a cure.

    How many of you out there that aren't "brainwashed" are spending time in the gym, watching your diets and getting ready for the cure when it comes. Do you think they are going to choose those that aren't motivated enough to even be in shape for the treatment and rehab after. It's been 41 years since they told me I would never walk and there would be no cure in my lifetime. I feel for me the time has passed for hope but I still work out and live my life in preparation in case there is one.

    We have been told for the past 35 years there would be a cure in 5 to 7 years and are still being told that. After a while it gets rather redundant. Those who put down the research and advances we've made in quality of life issues for SCI rather than into a cure were not around when our lifespan was measured in months for quads and a few years for paras. Ask guys like SCI 59 1/2 what it was like back then.

    Perhaps a cure will happen in the next few years; in the meantime, I'll take anything and any advance in treatments to keep me healthy enough for when the time comes. Even if it means being brainwashed by the great Canadian North in accepting my disability til the time comes my way.

    It's the ones who complain about no cure and put down others for getting on with life who are complacent. I get the respect for who I am and what I've done is because of me, not my disability. If my disability helps others realize their potential then so be it.
    Last edited by Patrick Madsen; 10-08-2014 at 03:26 PM.

  3. #33
    Interesting thread, CareCure members discussing care or cure.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  4. #34
    Senior Member marvin_cr's Avatar
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    i think Cure is the wrong word. you don't cure a broken bone, you treat, repair and heal a broken bone. Eventually there with be effective treatments to repair and heal a damaged spinal cord

  5. #35
    Quote Originally Posted by nonoise View Post
    Interesting thread, CareCure members discussing care or cure.
    Haaa. Back in the day there were BATTLES here about care vs cure.

  6. #36
    Quote Originally Posted by lynnifer View Post
    There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.
    Yep, I agree. Maybe for some of our younger friends (I just turned 50). Do the math, there is no "cure" in clinical trials now, so that says to me we are at least 20 years from anything. As much as people seem to think science is advanced, look at cancer. We still use extremely primitive methods such as chemotherapy and radiation to treat cancer after decades of research and orders of magnitude more funding.

  7. #37
    Quote Originally Posted by lynnifer View Post
    There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.
    Last monday I spent about two hours talking to a relatively skeptical researcher, for ex. he thinks stem cells are not needed to cure SCI, PTEN is getting nowhere etc.. he would test Ch'ase but with little expectations...
    He thinks to find a cure we need to understand better why the central nervous sistem does not regenerate after a severe injury (that is what he is focusing on at the moment)... but he ended saying he believes "it is not a question of if there will be a cure, but when", it might take 10, 20, 30+ years, but it will happen.

    From my perspective we just have to push for a cure to make it happen as soon as possible, if it will not be in time for us it will be for the younger people.

    30years in w/c it's too long and you have the right to be a bit negative.
    I hope a young person who got SCI today will see a cure before 30 years.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  8. #38
    Quote Originally Posted by Patrick Madsen View Post
    I did my rehab in Vancouver, B.C.. None of us were brainwashed into liking our disability. We were taught that a cure was not happening presently and would be years and years off, if any, so maximize your abilities and get on with life. I would rather be told the truth than have some rainbowed view that in 5 years, 7 years I'd be up walking again. I wonder how many out there are languishing at home wishing and not doing anything to be ready if there is a cure.

    How many of you out there that aren't "brainwashed" are spending time in the gym, watching your diets and getting ready for the cure when it comes. Do you think they are going to choose those that aren't motivated enough to even be in shape for the treatment and rehab after. It's been 41 years since they told me I would never walk and there would be no cure in my lifetime. I feel for me the time has passed for hope but I still work out and live my life in preparation in case there is one.

    We have been told for the past 35 years there would be a cure in 5 to 7 years and are still being told that. After a while it gets rather redundant. Those who put down the research and advances we've made in quality of life issues for SCI rather than into a cure were not around when our lifespan was measured in months for quads and a few years for paras. Ask guys like SCI 59 1/2 what it was like back then.

    Perhaps a cure will happen in the next few years; in the meantime, I'll take anything and any advance in treatments to keep me healthy enough for when the time comes. Even if it means being brainwashed by the great Canadian North in accepting my disability til the time comes my way.

    It's the ones who complain about no cure and put down others for getting on with life who are complacent. I get the respect for who I am and what I've done is because of me, not my disability. If my disability helps others realize their potential then so be it.
    Problem is a cure will not happen without our active support, just like the care and rights we have are the results of activism of many people.
    Most people do nothing to support cure research. I understand that as SCI can take all the energy and $ you have just to make it at the end of the day.
    What I don't understand are people who oppose cure research.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  9. #39
    I don't think I have ever run across an individual nor an organization opposed to a cure. I include those organizations here in the States that advocate for care. I believe they are of the opinion people need care, equipment, opportunities until there is a cure. It is about some semblance of quality of life. Maybe in Italy it is not like this.

    Quote Originally Posted by paolocipolla View Post
    Problem is a cure will not happen without our active support, just like the care and rights we have are the results of activism of many people.
    Most people do nothing to support cure research. I understand that as SCI can take all the energy and $ you have just to make it at the end of the day.
    What I don't understand are people who oppose cure research.

    Paolo

  10. #40
    Quote Originally Posted by Macjac View Post
    Fuck you!
    Hahaha...

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