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

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    #46
    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.
    You're telling us cancer treatment hasn't developed?
    http://www.cancerresearchuk.org/canc...ommon-cancers/

    There are treatments in trials showing improvements. I'm interested in any kind of improvement. Also the research and knowledge today of the CNS is very different compared to 30 years ago.

    20 years? Is that number based on your grand experience of medical research?
    Debating on CareCure is like participating in the special-olympics. You may win, but you're still disabled.

    Comment


      #47
      I said I had never met anybody with an SCI that was opposed to "cure". That is very different from how you reworded what I said.

      Originally posted by paolocipolla View Post
      Never met someone that thinks SCI will never be cured and therefore money spent to find a cure are wasted?

      Paolo

      Comment


        #48
        Originally posted by c473s View Post
        I said I had never met anybody with an SCI that was opposed to "cure". That is very different from how you reworded what I said.
        OK, there is for sure a language barrier here as I don't see a significant difference between the meaning of the words you used and the words I have used.
        It could also be that in my previous post it wasn't very clear what I meant.
        No big deal for me.

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

        Comment


          #49
          Originally posted by Nowhere Man View Post
          Are you saying that AB's think that paralysis is not that bad? Walking is overrated?
          No. You said that when people with SCI smile and say life is good, AB people are not dumb enough to believe them. I am saying that plenty of AB people are dumb enough to believe people with SCIs who say life is peachy and a cure is overrated. For every SCI person who says they don't need a cure, or life is just as good as it was before their injury or better (and I have heard people say their lives are better), there even more AB people who believe them and respond with a "Good for you " attitude.

          Comment


            #50
            PS I'll bet my car that 99% of the AB population that doesn't have some personal connection to SCI does not realize that SCI is more than just not walking. Almost every single person thinks that if you injure your spinal cord, you can't move and use a wheelchair to get around, and that is all that you deal with. Last year, Travis Roy gave the keynote speech at W2W in which he gave very detailed descriptions on everything that life with SCI entails. It was devastating to me when he requested his full speech not be made available to the public.

            Comment


              #51
              Originally posted by c473s View Post
              I said I had never met anybody with an SCI that was opposed to "cure". That is very different from how you reworded what I said.
              I also have never met anybody with SCI or an organization that is opposed to "cure" here in the USA. Even though there are people that doubt a cure or a therapy to help with recovery will come about during their lifetimes, they still do not "oppose" a cure or resent research, clinical trials and some funding taking place for those efforts. There's a 100% difference when you're discussing someone having an actual opposition or simply a nonbeliever that has some doubts about future successes.
              http://spinalcordresearchandadvocacy.wordpress.com/

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                #52
                Originally posted by tomsonite View Post
                PS I'll bet my car that 99% of the AB population that doesn't have some personal connection to SCI does not realize that SCI is more than just not walking. Almost every single person thinks that if you injure your spinal cord, you can't move and use a wheelchair to get around, and that is all that you deal with. Last year, Travis Roy gave the keynote speech at W2W in which he gave very detailed descriptions on everything that life with SCI entails. It was devastating to me when he requested his full speech not be made available to the public.
                AMEN. It indeed was the best keynote I'd ever heard.
                http://spinalcordresearchandadvocacy.wordpress.com/

                Comment


                  #53
                  Originally posted by tomsonite View Post
                  No. You said that when people with SCI smile and say life is good, AB people are not dumb enough to believe them. I am saying that plenty of AB people are dumb enough to believe people with SCIs who say life is peachy and a cure is overrated. For every SCI person who says they don't need a cure, or life is just as good as it was before their injury or better (and I have heard people say their lives are better), there even more AB people who believe them and respond with a "Good for you " attitude.
                  Yea they might say "Good for you!" but in their head they are thinking "How horrible that must be to be in a wheelchair for life. Thank god that's not me". They're not stupid enough to believe that paralysis is anything but horrendous.

                  You are right most AB's are oblivious to other functions lost besides walking. They fear paralysis when they think it only means not walking, now tell them that includes not feeling bladder, bowel, abs, and no orgasm, and they really cringe. And rightfully so.

                  Comment


                    #54
                    Travis does a great job and is eloquent framing the reality of living with SCI. He is also honest about wishing he was playing hockey again. I love his father Lee although he speaks with an accent to us Southernors. :-)
                    Originally posted by GRAMMY View Post
                    AMEN. It indeed was the best keynote I'd ever heard.

                    Comment


                      #55
                      Originally posted by Nowhere Man View Post
                      Yea they might say "Good for you!" but in their head they are thinking "How horrible that must be to be in a wheelchair for life. Thank god that's not me". They're not stupid enough to believe that paralysis is anything but horrendous.

                      You are right most AB's are oblivious to other functions lost besides walking. They fear paralysis when they think it only means not walking, now tell them that includes not feeling bladder, bowel, abs, and no orgasm, and they really cringe. And rightfully so.
                      Yeah you look on these polls asking able bodied people if they'd rather die or be paralyzed, majority agree they'd rather be dead. Also there wouldn't be so much pity if such a satistic was remotely accurate. The most common question we get is can you have sex so... And most girls that have attempted offering with me, offer other "alternatives" so they know, or at least have a pretty good idea.
                      Last edited by JamesMcM; 9 Oct 2014, 9:19 PM.

                      Comment


                        #56
                        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.
                        Hey Pat, there's no point in getting defensive, or reassuring us that that's not true, even though it is partially true we know he is generalizing. He said that himself, He also stated that he wasn't talking about all Canadians.

                        Comment


                          #57
                          Published in www.stemcellsandatombombs.blogspot.com.

                          If you have an idea for a new slogan send it to me after reading my comments and Mr. McBride's answer.
                          First of all I would like to thank Mr. McBride, executive director of Spinal Cord Injury British Columbia (SCI BC) for his thoughtful and speedy response to my email regarding his organisation's commitment to a cure for SCI.

                          The concern was raised after one of their posters explaining many of the challenges of paralysis used the slogan, "It's not about cure. It's about quality of life." sparked some controversy.

                          Of course we didn't get a response saying that SCI BC would now focus solely on cure, and that was never expected. SCI BC plays an important role in the SCI community by improving accessibility to housing, jobs, and the community as a whole and as a divergent membership organisation reflects the opinions of many who may or may not be cure oriented.

                          What we wanted to make sure was that they were; one, not anti cure; two, not flobbing cure off as some unrealistic goal; and three, they were going to continue putting a message out to the community which could easily be misconstrued as lowering the importance of cure. I think we got a Good response on all three points.

                          Are they anti-cure? No. In Mr. McBride's own words, "we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice."

                          Do they think cure is unnecessary? No.
                          "We absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face."

                          How about the continued use of this slogan. Again, I'm happy with the response. "Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this."

                          There are some areas where I think a more cure positive approach could be taken. I think like many SCI community organisations they understand our community's desire for cure but also don't want to spread false hope or have priest fail to concentrate on the here and now while they wait for cure. I personally do not think that the gulf between quality of life now so we can get to cure in the future needs to be so vast. I think the two are complimentary.

                          Since SCI BC is looking to change their slogan, Maybe we could give some of our own ideas which also reflects their organisations goals to achieve both quality of life and cure.

                          Have a suggestion, please leave it in the comment box below or send an email to StemCells.and.AtomBombs@gmail.com.

                          PS. As always, I'm having a lot of pain which makes it difficult to get motivated to write, but as always, when I do write and get some movement on a project, I feel a while lot better. I'll have to remember this.

                          Response from Mr. McBride

                          Hello Denis,
                          Thank you for taking the time to connect with me about the poster in question. We here at SCI BC are aware of the reaction it has generated – both positive and negative. In fact, it probably wins the prize for the highest volume of engagement we have had from any post. I am happy to clarify our position on the issue of cure, and although I am aware that my response will be published on your blog, I will nevertheless be frank and honest in my reply.

                          I will also confirm that I am very aware of your blog and the global movement you have so successfully created. I have watched with particular interest your communications with the Rick Hansen Foundation and Institute over the recent past. The voice of one can be strong but the voice of many can be a powerful thing.

                          With specific respect to the poster we posted recently, I will admit that we were somewhat hesitant about the phrase in question - "It's not about a cure. It's about quality of life." Let me interject now that we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice. However, having been involved with SCI research for over 22 years, I am aware of the (frustratingly) slow pace of discovery and it is why I am passionate about resetting the balance of investment in both the types of research that are being conducted and between research and the invaluable community services that will allow people with SCI to maximize their potential and quality of life today.

                          Getting back to the poster, it was actually created for a very specific audience at a non-disability-related event we were featured at. We created the poster to highlight many of the everyday challenges faced by people with SCI, which you affirm in your email and of which the general public is mostly ignorant. We used the wording about cure to help differentiate what SCI BC does from other SCI-related organizations with which we share a backyard. Which is to say, we stated it that way not to diminish the importance of finding a cure, but rather to highlight that there is a lot to be done today that can have an immediate positive impact and what SCI BC does to try and foster that.

                          We were concerned the wording we chose about the cure might be misinterpreted but we put it out there to see what kind of response it might yield. This wasn’t meant as a deliberate provocation. We just thought we would test it and see what the response was before we changed the wording, which we will be doing soon.

                          As mentioned above, we have been pleasantly surprised by the volume of response we have had to the poster. We welcome all forms of constructive feedback and think engagement of this kind is healthy. We often don’t hear about positive reactions to what we post, but we have had an overwhelmingly positive response to the poster. That said, we have also received a lot of negative responses to the cure statement, and we totally understand why. It is good to have it validated.

                          Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this. However, we think it is important to reflect the fact that people with SCI have broad ranges of priorities and that not all feel they need to be cured to have a quality of life – that one doesn’t need to be cured to be whole. We know this based on what so many of our members tell us and from some very interesting research that affirms it.

                          That said, we absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face. However, as this may be a very long-term proposition, we need to respond to the those who are not engaging in their communities or working to maximize their potentials because they are waiting for a cure they believe will be around the corner.

                          Through our 57 years of service delivery and the reports we receive from the health practitioners we engage with, we know that too many people with SCI are not participating in rehab or community services because they think these things are unnecessary as a cure is what they really need to move forward and that it must be coming soon. Unfortunately, researchers and mainstream media alike have perpetuated the false hope of an imminent cure. Through my research background and the connections with the research community that I maintain, I think it is clear that there aren’t any sure-fire candidates for a cure coming anytime soon. One never knows, of course, but I think the probability is low. This is why I advocate for ongoing basic science to better understand the complexity of spinal cord injury and why I advocate for research into what might not be considered cure-based (such as rehab strategies, mitigating or preventing secondary complications, and assistive technologies, all of which can yield meaningful, near-term benefits for people with SCI). It is also why I advocate for greater investment in community services.

                          I know I may be opening myself up to a mix of feedback, but more on my perspectives on resetting the balances of research and community service can be found in my blog posts and in SCI BC’s The Spin magazine. Here are a couple of links to these entries:

                          ?******** Investing research vs Community: http://sci-bc.ca/sci-research/invest...-vs-community/

                          ?******** Snotty Spine: A good investment? http://sci-bc.ca/news/snotty-spine-good-investment/

                          ?******** New research restores voluntary movement after complete SCI: http://sci-bc.ca/sci-research/new-re...-complete-sci/

                          ?******** The Spin Magazine: http://sci-bc.ca/stories/spin-magazine/

                          I know this is a rather verbose response, but I hope you and the Stem Cells and Atom Bombs community will appreciate that SCI BC does indeed think find a cure for SCI is a priority. I also hope that, as you mentioned in your email, it is recognized that there are many challenges faced by people with SCI that we need to address today and that SCI BC has a focus on many of them, and that it would be a great disservice to people with SCI if all of the money was diverted to efforts towards a cure. Too many would suffer unnecessarily and/or miss out on too much waiting for it to be realised.

                          We feel very strongly that we must reflect the views of our members who tell us that they know a cure may not be available in their lifetime and that they want us to promote and facilitate changes that will enhance their lives today, such as greater access to accessible housing, accessible transportation, funding to support all aspects of daily living, information on and access to accessible travel and recreation, reduced secondary health complications, and equal opportunities to participate in our communities. Through our Peer Support and Information Services, they appreciate knowing what is possible and how to try and achieve it.

                          With limited resources, time and expertise, we must achieve a balance between perusing the ultimate, *long-term goal of finding a cure for SCI with what is needed in the immediate and near-term to maximize ability and quality of life. This is not an easy equation and there will be endless debate about where that balance should lie. This, however, is healthy debate as it increases awareness and understanding that will benefit all participants in it.

                          Thank you again for taking the time to connect with me about the discussion we’ve generated through our poster. As we knew we would likely be doing when we posted it, we will be adjusting the wording of the contentious statement in the near future. I appreciate that what we change it to may not satisfy everyone, but I hope that you and those who follow and contribute to your blog know that SCI BC knows that finding a cure for SCI is a priority for almost everyone, but that where it fits on peoples priority list varies greatly.

                          I will be more than happy to continue the dialogue.

                          Sincerely,

                          chris
                          Chris McBride, PhD

                          Executive Director

                          Spinal Cord Injury BC*
                          780 SW Marine Drive, Vancouver, BC** V6P 5Y7* | www.sci-bc.ca | twitter: @sci_bc | Facebook: *SpinalCordInjuryBC |*YouTube:
                          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

                          Comment


                            #58
                            It's nice of him to have answered, but I have my doubts as to the supposed existence of all these people literally sitting around waiting for a cure, like the Rapture. For one thing, they'd be dead pretty quick.

                            Comment


                              #59
                              Originally posted by JamesMcM View Post
                              Hey Pat, there's no point in getting defensive, or reassuring us that that's not true, even though it is partially true we know he is generalizing. He said that himself, He also stated that he wasn't talking about all Canadians.
                              Hi James, Thanks. I find it disturbing sometimes when someone feels it is "sickening" because someone gets on with life and excels despite a devastating injury or disease. I trust everyone "hates" the challenges they are given yet decides to make it positive experience as much as possible. There are places in my life where I have excelled due to my injury. I am grateful that I have made differences that I otherwise would not have been open to without this injury.

                              Would I rather not have a SCI; of course I would but since I do there is nothing I can do about the disability. I do have control on how I handle the situation. I can choose to go around contiunally being remorseful and hating the situation or I can get on with life and enjoy it as much as possible.

                              The poster feels sorry for those of us who excel in sports, laugh and demonstrate a positive attitude towards SCI. I felt sorry for him as the injury seemed to be the identifying factor of who he is rather than his true self describing who he is. I'm not sure how long he has been injured; it sounded like fairly new. One of the criteria to get involved with clinical trials now and eventual cures will be attitude towards life and the disability.

                              Of course some ABs think they would rather be dead than have an sci. I feel the same way even now about having cancer,MS, being blind etc.. Trustfully by showing how one can still excel after a catastrophic injury, it helps those who may follow. This has happened more than once with me personally; one being my ex girlfriend when she contracted MS.

                              As I age and think back on my life with SCI, I am grateful in many ways of what I learned and the life I led. It's the life I have. I would have loved to have a 40 year career in the motion picture business but I didn't; so be it. I do miss things like everyone else but I also enjoy what I have just as much.

                              I'm way past it being Care vs. Cure. My generation of wheelers got us to where we are now. It's your generations time to take it to the next level.

                              Comment


                                #60
                                Nowhereman and I (I think we are in agreement) notice that there are a lot of people that think they deserve to be respected just for and by the simple fact that they lived with a disability, that is ridiculous. It's like respecting someone just because they got diagnosed with cancer, haha no. That being said like anyone else disabled, sick or healthy what they do with themselves can still earn respect. I also noticed some people with SCI around here seem to have a chip on the shoulder, like okay I'm disabled now I get to new group of rights, that's also garbage people got better things to do than sit around helping us, take us to the accessible entrance etc yes people are ignorant to us we're not anywhere near the majority or normal, so that's going to happen. And yes a lot, and I mean a lot of places arent accessible they had more important things in their building plan then making a ramp. Like all these "unpleasant" things that you look past and deal with every day but used to make the best of, these things need to be realized its the same they're not going to change, people don't owe us any favors like anyone else, we don't get extra treatment, we're not going to be able to get to into many places around the world, and people are going to treat you differently, look at you strange, act as if you're incompetent etc etc. Just comes with being disabled no different than the fact that we cant jump, Climb, run.

                                We were also talking about how people around here well anywhere really will talk about how great their disability is, or how they don't need a cure or, they're just as efficient, their life just as good as an able-bodied person. Well I find this to be embarrassing for them, I agree with that, I also find it to be disturbing. Even the great Christopher Reeves stated "that is the denial with a Capital D". And it is the mind and body are one, neither is just a disposable part , or better or worse than the other, they are meant to work together, that's the design of a human being. Without constant heavy amounts of endorphins which is extremely difficult if not impossible to do paralyzed with a high injury, or artificial components a.k.a. antidepressants The mind is not going to disregard the loss of the body, meaning you're not going to be at a place of "full contentment" without it. That's why they make themselves look like idiots acting as if there it is no big deal, and they're better off disabled, complete idiots. (And I get that that's them trying to strengthen their coping aka their denial whatever but still) How you describe your situation completely reasonable and rational I understand and many have explained it the same way.

                                Patrick unfortunately the statement about how able bodied people feel about being paralyzed and would rather be dead dead still holds true after being injured themselves, i mean look around, look how many people are contemplating traveling to Switzerland, have starved themselves, or worse six months to 40 years post injury. I have yet to see anyone with my level injury, or really anyone that is paralyzed excel to a point where I see them and think positively about my injury, possibilities of a fulfilling future. To each his own though, whether I could compete with them or not, which I guarantee I couldn't. I find disabled sports to be sad, strange and unentertaining. Not trying to step on anyone's toes just giving my opinion and how I feel about it. And I think if I were doing a trial for efficiency I would want someone that hated their disability more than anything knew that they needed to beat it, because it's not an option for it to stick around. More motivated, hard-working then someone that's just okay with going home whether they recover or not.

                                In the end there is nothing acceptable about spinal cord injury and it needs to be hit hard, very hard by all of us in order to get a effective treatment as quickly as possible. But until then yes there will be people that are making the best of it, but still deal with very real limitations (whether they want to Address them or not) and frustrations as well as serious health issues. We will have many people trapped in isolation some by choice, others by lack of ability and resources. We will lose many people no matter what age to many serious health issues, and people taking their own life because they don't find this a reasonable way to live, or out of desperation. All in all in needs to go preferably yesterday. That is what I hope this generation does beats the disability rather than surviving with it, and it may very well be only for acute injuries even still we rid the world of one more atrocity...

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