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

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  • #76
    Preparing for a cure by caring for now.
    Last edited by cripwalk; 10-13-2014, 08:15 PM.

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    • #77
      I've heard this a fair bit too. I've also heard people say 'even if there was a treatment/cure I probably wouldn't choose to receive it'. I mean wtf!! The same type of person(s) will say that their life wouldn't be what it is today if it wasn't for their sci (perhaps they met their husband/wife through a sci related activity or they excel at a sci related sport) so why change something that has brought them so much joy.

      It really shocks and saddens me to read such things.



      Originally posted by Sue Pendleton View Post
      Anyone who has ever done state or lower cure research activism in the US has run into those opposed to a cure. I warned one state leader about this and he thought I was nuts. At the next W2W he let me know he had met the insane who oppose a cure. Yes, they are truly opposed to cures for most disabilities whether congenital or acquired. They do not see themselves as "broken" and so do not need to be "fixed". The absolute worst I ever heard was a Professor at UCLA who did not want polio eradicated because it would eliminate post polio culture.

      I have no problems with the quality of life organizations as long as they stick to their mission. Canada has the highest number of employed disabled people in the world because they try to eliminate barriers. They also have some of the best cure researchers in the world. I do have a problem with those who say they support cure research and fund it but the places that review such charities don't agree nor do previous supporters.

      That poster had their mission stated in the upper left gray box. They should have left it at that and it would raise awareness of the need for funding both sides while being clear about their organizational aims.

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      • #78
        I hear it said only when framed with "until I know it would be a safe procedure". Heck if you met your spouse because of where you might have been when you met them I bet they would not divorce and leave you if your regained your muscles, bowel function, bladder function and sexual function. I have heard people of certain faiths express opposition to using embryonic stem cells but not a cure from other means. In 39 years I have yet to hear an SCI individual say the would be opposed to being "cured".

        I have heard people say they would not change being injured but not unwilling to have that damage reversed.

        Originally posted by scisucks View Post
        I've heard this a fair bit too. I've also heard people say 'even if there was a treatment/cure I probably wouldn't choose to receive it'. I mean wtf!! The same type of person(s) will say that their life wouldn't be what it is today if it wasn't for their sci (perhaps they met their husband/wife through a sci related activity or they excel at a sci related sport) so why change something that has brought them so much joy.

        It really shocks and saddens me to read such things.

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        • #79
          It's turned into a collaboration and it's a good thing. Cure and care should work together, because unfortunately without a cure we need care. You're right everyone has opinions, and for the rest of humanities existence we will argue and fight over them, some with positive results other with negative. There is nothing selfish in wanting a cure now, it will benefit many many people that cannot stand this, and others that can as well. As we speak there is probably someone staring at their pill bottles or a knife contemplating suicide because of paralysis. Not to mention all of the people that will be injured in the future, children for one. They deserve to have a normal childhood and a normal life, not hearing make the best of it, focus on what you can do, it should just be go out and do it because you got it. I have read some of the saddest tearjerking stories caused by people living with paralysis in their attempts to escape it by any means. Just like everyone has opinions, everybody lives with SCI differently, some people can't bear the shame of asking for things, bowel care, being Defenceless etc. others don't think twice about it. Some people are able to still do their passions, other people find a new one, but unfortunately others aren't so lucky, then they have hear just change who you are, how you think, what you enjoy as if they themselves don't know what's going on inside, but after an injury their principles, perspectives etc. are open for interpretation and often judgment. It's horse shit!!

          The Bottom of the poster is ridiculous, many people with spinal cord injury can't do the things that they stated, many people aren't that fortunate whether it's severity, level of injury, pain, osteoporosis, money situation, location, isolation it's to generalized of a statement to make for the general public to read. If we consider promotions like this to be in the care department, un rational statements like this can be harmful. You know how many times I've heard I am not trying, cause I don't use a manual chair or transfer myself or that it's not true that I can't cath myself. While I have the MRI showing a completely crushed spinal cord, a cyst splitting it, I live with the right shoulder that never fits in its socket, the same arm that can't even pronate get even the slightest bit of tricep action. I've spent ridiculous sums of money and effort on physiotherapy with no luck. But wait I've seen an incomplete C-5 transfer , use a manual, cath himself, get dressed etc, so I should be too right? But hey that's just my opinion.
          Last edited by JamesMcM; 10-14-2014, 09:47 PM.

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          • #80
            Again this is just my opinion, but I strongly believe these people that don't want a cure, or are opposed to a cure were given a relatively quick and safe treatment that returned all functions to normal (The scars of being bound to a chair will remain but can be reversed for the most part) just for a day that's all of the time it would take, their opinionswould drastically change on the matter. given the option to return back to the chair, they'd look at you like you had two heads. Sometimes I think most people have forgotten what it's like to be able bodied.

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            • #81
              Originally posted by c473s View Post
              I hear it said only when framed with "until I know it would be a safe procedure". Heck if you met your spouse because of where you might have been when you met them I bet they would not divorce and leave you if your regained your muscles, bowel function, bladder function and sexual function. I have heard people of certain faiths express opposition to using embryonic stem cells but not a cure from other means. In 39 years I have yet to hear an SCI individual say they would be opposed to being "cured".

              I have heard people say they would not change being injured but not unwilling to have that damage reversed.
              Thank you for taking the time to explain your vast experiences on this. It's easier to understand when explained in this context. If you weren't listening so closely you may have perceived these people to mean they were opposed to a cure when that really wasn't the case at all.
              http://spinalcordresearchandadvocacy.wordpress.com/

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              • #82
                Originally posted by marvin_cr View Post
                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
                Exactly right. We will never be what we were before, it will be something new and better than what we are now. I hope I see it in my lifetime, but I don't know.
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                • #83
                  Originally posted by t8burst View Post
                  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.
                  Yep. It's important to be realistic in our hopes.

                  Although, I am very excited about the epidural stimulation therapies ... I like Silver's work but it's years away. In fact, I've posted on Twitter to Rick Hansen Foundation why they aren't funding the Reeve work because it looks very fruitful. Guess we'll know more after w2w.

                  I was going to make a comment on cancer, but there is no comparison. A co-worker was just diagnosed with the terminal kind.
                  Last edited by lynnifer; 10-15-2014, 03:51 AM.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                  • #84
                    Originally posted by JamesMcM View Post
                    Again this is just my opinion, but I strongly believe these people that don't want a cure, or are opposed to a cure were given a relatively quick and safe treatment that returned all functions to normal (The scars of being bound to a chair will remain but can be reversed for the most part) just for a day that's all of the time it would take, their opinionswould drastically change on the matter. given the option to return back to the chair, they'd look at you like you had two heads. Sometimes I think most people have forgotten what it's like to be able bodied.
                    Exactly, the last sentence. SCI from childhood don't even know what they're missing. They either never had sex or never had good sex.

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                    • #85
                      Originally posted by Sue Pendleton View Post
                      Anyone who has ever done state or lower cure research activism in the US has run into those opposed to a cure. I warned one state leader about this and he thought I was nuts. At the next W2W he let me know he had met the insane who oppose a cure. Yes, they are truly opposed to cures for most disabilities whether congenital or acquired. They do not see themselves as "broken" and so do not need to be "fixed". The absolute worst I ever heard was a Professor at UCLA who did not want polio eradicated because it would eliminate post polio culture.

                      I have no problems with the quality of life organizations as long as they stick to their mission. Canada has the highest number of employed disabled people in the world because they try to eliminate barriers. They also have some of the best cure researchers in the world. I do have a problem with those who say they support cure research and fund it but the places that review such charities don't agree nor do previous supporters.

                      That poster had their mission stated in the upper left gray box. They should have left it at that and it would raise awareness of the need for funding both sides while being clear about their organizational aims.
                      I have had very similar experiences.

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

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                      • #86
                        How did they even go about that I would literally be perplexed. I would have to debate and that would probably get heated like to the point where I would throw gimp hands.

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                        • #87
                          What "It's not about the cure, it's about quality of life." means to me is whoever said it puts higher value on efforts to improve living with disability than on efforts to remove disability.
                          "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                          "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                          "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

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                          • #88
                            That's ridicules. It's not an individual it's an organization, and both (care & cure) should be working together. SCI is something that needs to be destroyed and forgotten about no different then TBI, MS, ALS, cancer, leprosy, polio etc. It's not fair to keep people living with any of these conditions, and let's face it with enough money and effort we can fix these things instead of building ramps so they can be bound to a chair, unable to fully interact and engage in the full variety of life.

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                            • #89
                              Originally posted by Oddity View Post
                              What "It's not about the cure, it's about quality of life." means to me is whoever said it puts higher value on efforts to improve living with disability than on efforts to remove disability.
                              Yes, it can be read that way, and that's why SCI BC has said they want to change it.
                              Any more good ideas about a new slogan for them?

                              I've gotten a bunch more which I'll put up tomorrow (I hope).

                              I don't think that a one hundred percent cure slogan will be acceptable as it's not a 100 percent cure organisation. What would be nice is a slogan than doesn't devalue either care, quality of life, or cure.

                              Anything is better than, "It's not about cure."

                              I think they would truly value any input and have said so.
                              Dennis Tesolat
                              www.StemCellsandAtomBombs.blogspot.com

                              "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                              Martin Luther King

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                              • #90
                                Originally posted by JamesMcM View Post
                                That's ridicules. It's not an individual it's an organization, and both (care & cure) should be working together. SCI is something that needs to be destroyed and forgotten about no different then TBI, MS, ALS, cancer, leprosy, polio etc. It's not fair to keep people living with any of these conditions, and let's face it with enough money and effort we can fix these things instead of building ramps so they can be bound to a chair, unable to fully interact and engage in the full variety of life.
                                It's not ridiculous for someone to value living as well as possible in their present reality over changing their reality into something different. It's more ridiculous, IMO, to depress oneself in the present by focusing on attachments to the past. Who is in more denial? A person that has achieved contentedness with the inevitable declines of life, or a person that insists achieving contentedness is only possible in a single, never changing, state?
                                "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                                "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                                "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

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