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Thread: The basis for all the negativity

  1. #21
    Quote Originally Posted by antiquity
    Bravo Lynnifer!!!!!

    That's one of the best posts I've read on these forums in a while. Maybe because I could relate to so much of what you said having been injured in 78 in the pre-ADA world where SCI'ed children were considered retarded and relegated to special schools and nothing was WC accessible anywhere. After 2 IQ tests (because they couldn't believe that a 'retard' could score in the 130's) and wasting a year at a special school, I was finally mainstreamed. I also found spinewire in 97 (did you post there?) and also held onto the hope that my doctor gave me in the early 80's that there'd be a cure in 15 years (1993) which was when the GM1 trials were underway. I saw a news blurb about it and thought yessss, my doctor was right! LOL. We have come such a long way since then and there is so much cause for hope and optimism today. If people only knew how paltry SCI research was then compared to now they'd be hopeful too. I got on with my life but still want B/B control. I can't imagine ever not wanting just that little bit of dignity and independence back and I'll always want it. A cure that restores ambulation will come and although walking is last on my list, those injured more recently have that bit of icing to expect. Those of us who's muscular/skeletal systems are too far gone to expect walking will still gain to benefit and knowing that is reason enough to keep me going. As Wise said, it won't happen unless we make it happen!
    I want to add my Bravo as well to Lynnifer. Hope comes from the heart, not the mind. Christopher recognized this very early on. His first goal was to put hope back into the hearts and the cure into the minds of people and their doctors. As I pointed out several times before, he was the one who taught me the importance of hope and the courage to use the word cure. As he suggested, without hope, we have nothing. Why not go for the cure, he asked? If we don't aim for it, we won't get it. He was right.

    As some people have pointed out, we are running a marathon. Each hour of a marathon is like a year in the race for the cure. To do it under 2 years will be a world record. To do it under 3 years would be world-class. To do it under 4 hours means that you are in very good shape. If you are malnourished, poorly motivated, and ill-prepared (as we are in the field of spinal cord injury), it may take a decade or longer. If we aim to do it in 20 years, people stop working hard and take time out. That is just human nature.

    Yes, it is true that clinical trials take a long time. That is only if we do the trials sequentially, e.g. 2 years for phase 1, 3 years for phase 2 trials, and five years for phase 3 trials. However, if we push the trials, it can be done in 3-4 years. Trials of many treatments can be done in parallel. Preclinical studies must go on while the clinical trials are going. The treatments must be prepared and scaled up as rapidly as possible. We should be doing combination therapies. And, the trials should go on all over the world, including the USA. The above is just common sense.

    Wise.
    Last edited by Wise Young; 10-15-2006 at 06:34 PM.

  2. #22
    Quote Originally Posted by Wise Young
    I just received a private message from a member who pointed out that her "friends" had told her that it would take a long time for any treatment to be shown to improve spinal cord injury, that it would take twenty years or longer even after the CRPA is passed. I thought that I would comment publicly about the negativity that has long dominated spinal cord injury.

    Why people were so negative about the prospects of recovery after spinal cord injury or the possibilities of therapies that can restore function? Why do doctors tell patients the day after their injury that they would never walk again, despite data that indicate that this assertion is incorrect? I know of no other condition where such pessimism is imposed on people. You don't find doctors telling patients with cancer that they have no chance to recover and that there will be no therapy in the future that would help them.

    When I first started in the field in the late 1970's, my neurosurgery colleagues (I was on the faculty of the one of the best neurosurgical departments in the world) told me that there is no possibility that any drug would be helpful for spinal cord injury. One of my closest friends told me that restoring the spinal cord is like reconstructing a crushed strawberry and that was crazy for me to think that it could be done.

    When our first experiments showed that methylprednisolone improved blood flow in injured animal spinal cords and improved recovery, most of my colleagues in the field were skeptical that this would work in humans. It took five years to convince my colleagues to test the drug and to persuade NIH to fund a clinical trial to test the treatment. Fourteen leading spinal cord injury centers in the United States participated in the study.

    Even after we showed that methylprednisolone significantly improved neurological recovery by about 20% in people with both complete and incomplete spinal cord injury, the naysayers continued. This was the first double-blind placebo-controlled multicenter clinical trial that passed the most rigorous peer review and was published in the New England Journal of Medicine. Several other clinical trials confirmed our results. Despite this, the naysayers continued.

    The naysayers first claimed that the improvement was not “functionally significant”. However, as most people with spinal cord injury know, the return of even one or two levels of function is very worthwhile. Some tried to claim that a 24-hour course of methylprednisolone is harmful. But, our trial showed clearly that it was not. Nevertheless, without presenting any credible data of their own, doctors managed to declare that methylprednisolone should be an “option” and not a “standard” of therapy.

    I am not telling this sad story to say that I am right and they were wrong but simply to point out that there is an unusual level of pessimism and naysaying that has long impeded progress in the spinal cord injury. That pessimism still exists today. It shows up in the form of people declaring that no therapies are possible and that, even if therapies were possible, their crystal balls tell them that would take 20 or more years before any therapy will be available.

    Pessimism is a self-fulfilling prophecy. We don’t need a crystal ball to tell us that if we don’t try, there will be no therapy. If we don’t start it now, it will take even longer. The problem with saying that it will take 20 years is that it will take 20 years. Let’s not fall into that trap of pessimism. Nobody ever said that it would be easy but let’s not make it impossible before we even start. Christopher Reeve died trying. Let's not compound that tragedy by giving up before we try.

    Wise.
    WELL SAID DR...

  3. #23
    Lynnifer,

    What a great post. You write from the heart and have a great spirit. I really feel that you will see great improvements before you hit 40. Could even be much before. Lord knows you're due it. I have good feeling though that I just can't describe.

    Wise,

    Forever grateful for what you do and the knowledge you bring to this site. I think those who touted 5-10 years 15 years ago were clearly misinformed. There was nothing even really hinting toward that time scale. A treatment more sophisticated than a single modality is needed and clinical trials for such are only just beginning. While I understand the pessimism, people need to break free from the constraints of what they heard years ago and embrace the enevitable.......we really have never had anywhere near the cause we do now to get excited.

  4. #24
    Senior Member spidergirl's Avatar
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    I think that there is so much talk and so little action that its starting to become a redundant sick joke to me. There has not been one single case in the whole world of anyone that has stood up and walked from any kind of SCI treatment or therapy. If the science is there and someone can show in 1 human that it is possible than i think the floodgates will open. Nobody believes because nobody has seen.

    There is no one person on the face of the earth, i think not even Bush, that would say NO to something that is proven and shown to cure any kind of human being with anything.

    So what i say is PROVE IT!

    Dr. Young now your using the words decades or longer and that's so scary. Reversing paralysis seems like something that can never be done so i can understand being skeptical. I don't think anyone of us can possibly fathom going back to the other side after this mess- who on the face of the earth experiences things like that. NOONE. From being a normal healthy girl to being paralyzed back to being normal and healthy- LOL!!!!

    Again, PROVE IT!!! I say to all doctors and scientists and researchers of these worlds PROVE IT. And than watch what will happen.

    But on the bright side- hey lets go out and fight for people not injured yet too walk again.

    Please no one attack me and think i am being negative, i merely am being realistic.

  5. #25
    Quote Originally Posted by spidergirl
    I think that there is so much talk and so little action that its starting to become a redundant sick joke to me. There has not been one single case in the whole world of anyone that has stood up and walked from any kind of SCI treatment or therapy. If the science is there and someone can show in 1 human that it is possible than i think the floodgates will open. Nobody believes because nobody has seen.

    There is no one person on the face of the earth, i think not even Bush, that would say NO to something that is proven and shown to cure any kind of human being with anything.

    So what i say is PROVE IT!

    Dr. Young now your using the words decades or longer and that's so scary. Reversing paralysis seems like something that can never be done so i can understand being skeptical. I don't think anyone of us can possibly fathom going back to the other side after this mess- who on the face of the earth experiences things like that. NOONE. From being a normal healthy girl to being paralyzed back to being normal and healthy- LOL!!!!

    Again, PROVE IT!!! I say to all doctors and scientists and researchers of these worlds PROVE IT. And than watch what will happen.


    Cheryl,
    you inject a healthy dose of reality in this thread.

    When I was injured 1 year [and two days] ago, I remember waking up and wanting desperately to hear about treatments. Clinicians would tell me that "there's stuff happening with stem cells." Everyone seems to think that a cure for this paralysis is right around the corner.

    Well, a year has come and gone. The "right around the corner" seems more and more distant. Is believing in a cure for SCI is like believing in Santa Claus or the Easter Bunny?
    Last edited by dan_nc; 10-15-2006 at 09:29 PM.
    Daniel

  6. #26
    Senior Member Hunker's Avatar
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    Quote Originally Posted by spidergirl
    I think that there is so much talk and so little action that its starting to become a redundant sick joke to me. There has not been one single case in the whole world of anyone that has stood up and walked from any kind of SCI treatment or therapy. If the science is there and someone can show in 1 human that it is possible than i think the floodgates will open. Nobody believes because nobody has seen.

    There is no one person on the face of the earth, i think not even Bush, that would say NO to something that is proven and shown to cure any kind of human being with anything.

    So what i say is PROVE IT!

    Dr. Young now your using the words decades or longer and that's so scary. Reversing paralysis seems like something that can never be done so i can understand being skeptical. I don't think anyone of us can possibly fathom going back to the other side after this mess- who on the face of the earth experiences things like that. NOONE. From being a normal healthy girl to being paralyzed back to being normal and healthy- LOL!!!!

    Again, PROVE IT!!! I say to all doctors and scientists and researchers of these worlds PROVE IT. And than watch what will happen.
    a 15 year
    But on the bright side- hey lets go out and fight for people not injured yet too walk again.

    Please no one attack me and think i am being negative, i merely am being realistic.
    I SSI T 11/12 Incomplete I fight and have a son 15. You have to take a chance. I did wanted a child not to wak as much and won that battle?

  7. #27
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by Hunker
    I SSI T 11/12 Incomplete I fight and have a son 15. You have to take a chance. I did wanted a child not to wak as much and won that battle?
    What?

  8. #28
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by dan_nc




    Well, a year has come and gone. The "right around the corner" seems more and more distant. Is believing in a cure for SCI is like believing in Santa Claus or the Easter Bunny?

    i might as well get bit by a vampire and get some bat cells in Transylvania.

  9. #29
    Quote Originally Posted by Wise Young
    Pessimism is a self-fulfilling prophecy. We don’t need a crystal ball to tell us that if we don’t try, there will be no therapy. If we don’t start it now, it will take even longer. The problem with saying that it will take 20 years is that it will take 20 years. Let’s not fall into that trap of pessimism. Nobody ever said that it would be easy but let’s not make it impossible before we even start. Christopher Reeve died trying. Let's not compound that tragedy by giving up before we try.

    Wise.

    Wise,
    Thank you for your constant inspiration. Your above statement holds very true and reminds me of a quote that has become a personal mantra of sorts. Frame of mind, beliefs, and perspective must be carefully monitored when trying to accomplish any challenging endeavor, for they hold the key to overcome that challenge.


    "Whether you think you can or can't, either way you are right"

    Henry Ford


    So let's know we can, and do!
    Last edited by cljanney; 10-15-2006 at 11:40 PM.

  10. #30
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    There are some really beautiful messages in here. Everybody with their negative attitudes does not help. What are you trying to do use reverse psychology, trying to piss off everybody who is working so hard who are trying to make things better for us. What do you think would happen if the scientists said & doctors screw it you are right. If you can not beat them might as well joining them. This is not a pity party. We have to keep on fighting to get out of these wheelchairs. Every day something positive is happening. We should be happy to what we have today. Time & $ positive thinking will make things happen. Keep up the good work Dr. never give up on what you believe in. For the people in here who made me see the light thank you. Never give up on hope & dreams.
    keiffer66

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