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Rick Hansen doesn't dream to cure SCI

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  • #31
    Ironic that this debate has started up, Rick has been doing a lot of tv interviews the last week or so and at everyone I've heard he's talked about cure being a focus.

    For the naysayers has it ever occured to you that some of the care stuff they are researching is part of the cure? Injuries are not nearly as disabling as they were 25-30 years ago.

    As a Canadian who has lived with a disability for the last 41 years I can tell that things are a hell of lot beter then they were pre tour. The biggest thing that has changed is perception, in the 70's and early 80's if you were out in a chair in public you were pretty much ignored or treated like a freak. Today people in chairs are just part of the fabric of life.

    Who knows how far the road the cure will come. Wise has said it's just not a matter of money.

    The care stuff can make improvements to peoples life in the immediate future, the goals are more tangible.

    The older generation of people in chairs worked bloody hard to get us where we are as far as treatment, access etc. The attitude displayed around here seems so self centered at times. With a cure still a ways away shouldn't we also be working to make the lifes of the newly injured better then it was when we were injured?(I'm speaking a bit rhetorically here because my disability is congenital)

    It's the little gains that make a huge difference.

    Comment


    • #32
      Originally posted by sherocksandsherolls View Post
      Ok I see your point now..sorry about any apparent hostility.

      Yes, if you mean donors should protest.if they feel they were mislead...that makes more sense now.

      I am glad you made the history of your complaint more "transparent".
      ;-))))
      In God we trust; all others bring data. - Edwards Deming

      Comment


      • #33
        Originally posted by sherocksandsherolls View Post
        Ok I see your point now..sorry about any apparent hostility.

        Yes, if you mean donors should protest.if they feel they were mislead...that makes more sense now.

        I am glad you made the history of your complaint more "transparent".
        Sher,

        I want to add that the word "cure" is used in a very questionable way too often, in my opinion.
        If you look in any dictionary the conclusion you'll get to is that "cure" means "to heal"
        Then you may do endless academic discussions to stretch the definition of a "cure", but what it metters is what the word "cure" means in the current lenguage.

        If you have a flu you are cured when the flu is gone.
        In the same way, in common perception, if you have SCI you are cured when you have repared the damage to the spinal cord and restored the lost functions.

        In SCI, in my opinion, it would be more fear to talk about "compensative treatments" (what makes you live better with SCI) and "curative treatments" (what restore functions)

        Unfortuantly "compensative treatments" & "cuative treatments" are both called "cures" very ofthen as CANUK just did.
        That is misleading in my opinion.

        I made several donations to different SCI researchers/orgs & a few fundraising events (not for RHF) & looking back I feel I have been misleaded by the way the word cure has been used.. my mistake probably.

        Anyway as I know RHI is focusing on research for "compensative treatments", and accessiblity but many are donating thinking RHF is spending money to get people out of wheelchair, that is not true anymore as I know as they have changed the research they are funding.

        So I think that more transparency would be good.

        Then I also think that, if people with SCI would understand & see what's happen in labs about SCI research for chronic SCI, all of us would support more SCI research directed to repair SCI & would ask RHF to support research for "curative treatments".

        Please see this video, I think is inspiring:

        http://www.youtube.com/watch?v=Os9fk4hZ2hM

        Paolo
        Last edited by paolocipolla; 02-03-2011, 09:03 PM.
        In God we trust; all others bring data. - Edwards Deming

        Comment


        • #34
          I never said care and cure were the same thing. What I said was that somethings that are discovered as part of the care research might be a step on the road to a cure.

          Have you ever considered that without research on care related issues that people might end up to dehabilitated to get the full effect of any cure.

          Comment


          • #35
            Well said Canuck, I do remember those days in Vancouver pre-tour. Rick has always been about quality of life and keeping a posistive mental attitude. I think he got it from guys like you back in the day when it was guys like you that got us going to where we are now.

            Comment


            • #36
              http://www.facebook.com/home.php?#!/...99743776706927

              Comment


              • #37
                Originally posted by Patrick Madsen View Post
                Well said Canuck, I do remember those days in Vancouver pre-tour. Rick has always been about quality of life and keeping a posistive mental attitude. I think he got it from guys like you back in the day when it was guys like you that got us going to where we are now.
                Thanks Pat, being disabled in the 70's wasn't very "fun" was it.

                Comment


                • #38
                  Originally posted by canuck View Post
                  Ironic that this debate has started up, Rick has been doing a lot of tv interviews the last week or so and at everyone I've heard he's talked about cure being a focus.

                  For the naysayers has it ever occured to you that some of the care stuff they are researching is part of the cure? Injuries are not nearly as disabling as they were 25-30 years ago.

                  As a Canadian who has lived with a disability for the last 41 years I can tell that things are a hell of lot beter then they were pre tour. The biggest thing that has changed is perception, in the 70's and early 80's if you were out in a chair in public you were pretty much ignored or treated like a freak. Today people in chairs are just part of the fabric of life.

                  Who knows how far the road the cure will come. Wise has said it's just not a matter of money.

                  The care stuff can make improvements to peoples life in the immediate future, the goals are more tangible.

                  The older generation of people in chairs worked bloody hard to get us where we are as far as treatment, access etc. The attitude displayed around here seems so self centered at times. With a cure still a ways away shouldn't we also be working to make the lifes of the newly injured better then it was when we were injured?(I'm speaking a bit rhetorically here because my disability is congenital)

                  It's the little gains that make a huge difference.
                  canuk,

                  can you give some examples of:

                  "some of the care stuff they are researching is part of the cure?"

                  That would help a lot the progress of the discussion in my opinion.
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                  • #39
                    Originally posted by canuck View Post
                    I never said care and cure were the same thing. What I said was that somethings that are discovered as part of the care research might be a step on the road to a cure.

                    Have you ever considered that without research on care related issues that people might end up to dehabilitated to get the full effect of any cure.
                    Did I say somewhere that "research on care related issues" should not be done at all?

                    Yes, actually you never said that cure & care are the same thing, still, to me, just saying that:
                    "part of the care research might be a step on the road to a cure"
                    is confusing without an example to clarifay more what you are referring at.
                    Last edited by paolocipolla; 02-03-2011, 09:21 PM.
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                    • #40
                      I think anything that can partially mitigate the extent of damage could be part of a cure treatment protocol.

                      No you didn't say it shouldn't be done but definately make it sound like it should be a very low priority.

                      Comment


                      • #41
                        The walls have ears.

                        Comment


                        • #42
                          Originally posted by Scaper1 View Post
                          The walls have ears.
                          It would seem that way...

                          Another way a care related issue might help in the cure process directly, what would happen if somebody who sustained a SCI had other injuries that were so severe that they are in no shape to survive any surgery involved in a cure treatment. I consider anything that would reduce the damage a care issue. It only stands to reason that the less damage there is to the cord the easier and more effective a cure treatment will be.

                          The same theory could apply as far as the length of time it takes to transport somebody to hospital. If somebody is injured in Northern British Columbia it can easily take 6 or 7 hours at least between the time of injury and the time the paitent arrives at a trauma center or spinal unit. Shouldn't there be a focus on making sure the patient arrives in the best possible condition?

                          Comment


                          • #43
                            Originally posted by canuck View Post
                            I think anything that can partially mitigate the extent of damage could be part of a cure treatment protocol.

                            No you didn't say it shouldn't be done but definately make it sound like it should be a very low priority.
                            It should be a low priority. I am a low level quad and I'm as comfortable as Im ever gonna be in a chair. What else do I need? I know that I have it good because of the fight that many older sci fought, and I thank them. But now its time to solve the root of the problems, not try to mask them.

                            I know that we are no where near a cure, but part of the reason is because we spend most of the money on care.

                            Comment


                            • #44
                              All great points, Canuck. The fact of the matter is that those who are disappointed in RHI's efforts and are fixated on a cure and a cure alone, are newly injured individuals. Those of us who have been injured for 10+ years realize a spinal cord injury is a multifaceted issue. We can't fault those who are only recently injured because they simply don't know any better.

                              I want a cure just as much as the next person, and I've been injured 23 years. I just know that there is so much more to it than simply getting up and walking again from a treatment.

                              For those who think RHI should spread the wealth, perhaps instead, research to see where Rick Hansen started. Make a global spectacle like he did. In fact, do something that hasn't been done before. Inspire people, and show them how crucial it is to invest in the cure. And then, when the spectacle is over, keep working your ass off until your government listens and allocates funding for your cause. Rick Hansen has made this his life long goal, and, from what I know, he has never taken a day off.

                              Europe is far larger, and the population is far greater than ours. If a cure is the sole reason you exist, then dedicate your life to fighting for it. I personally realize that I can't dedicate my entire life to this cause alone. I have a family, I want a career, I want to build a life for myself that I'm proud of, and I realize that can happen, with or without a cure.
                              Last edited by KiranA; 02-04-2011, 12:27 AM.

                              Comment


                              • #45
                                Kiran, no one is trying to take anything away from you, and especially not from Rick. Nor is everyone here newly injured, unfamiliar with the backstory, or ignorant of the complexities. What's at issue is a major research institute (ICORD in particular) that makes “cure” a prominent goal of its fundraising campaign and public image but isn't actively pursuing that part of its own mandate.

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