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Thread: The basis for all the negativity

  1. #11
    Senior Member Hunker's Avatar
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    Just having a board to talk on has been a great help to me. Twenty + years ago I was alone and depressed.

  2. #12
    Dr. Young, I got all kinds of HOPE!!!!!! I was saying that it just seems that way, is why some people really are negative about it. I truly beleive that some day a cure will be found, Just not as long a Bush is president or any Republican for that matter.

  3. #13
    Senior Member Scorpion's Avatar
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    Quote Originally Posted by Wise Young
    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.
    Agreed. But...

    There is also a problem with optimistic estimates of "5 to 10 years" which in ways can breed pessimism, as this "5 to 10" is heard year after year. Friday marked 16 years for me, and as I've stated before on this forum (and SpineWire), I was told by optimistic therapists and doctors in 1990 that there could be an SCI cure in "5 to 10 years".

    I think it goes without saying that hearing that same "optimistic" estimate 16 years later can fuel pessimism. I won't go into my other reasons for pessimism right now regarding a cure that may benefit me in my lifetime, but my pessimism isn't the same as the pessimism and the outright denial of any possibility you faced from your colleagues in the '70s.

    A cure will come. I believe that. I don't know when, and I don't know how much I or other chronic SCIs will benefit, so I will not be one of those people telling newly SCI'd people to hold out for a cure that's coming in "5 to 10 years" as I believe that can be just as dangerous as hearing "20 years" or "never".

    "Hope for the best, prepare for the wost" may be cliche, but I believe it is essential to survival, even for the most optimistic of us.

  4. #14
    Quote Originally Posted by Scorpion
    Agreed. But...

    There is also a problem with optimistic estimates of "5 to 10 years" which in ways can breed pessimism, as this "5 to 10" is heard year after year. Friday marked 16 years for me, and as I've stated before on this forum (and SpineWire), I was told by optimistic therapists and doctors in 1990 that there could be an SCI cure in "5 to 10 years".

    I think it goes without saying that hearing that same "optimistic" estimate 16 years later can fuel pessimism. I won't go into my other reasons for pessimism right now regarding a cure that may benefit me in my lifetime, but my pessimism isn't the same as the pessimism and the outright denial of any possibility you faced from your colleagues in the '70s.

    A cure will come. I believe that. I don't know when, and I don't know how much I or other chronic SCIs will benefit, so I will not be one of those people telling newly SCI'd people to hold out for a cure that's coming in "5 to 10 years" as I believe that can be just as dangerous as hearing "20 years" or "never".

    "Hope for the best, prepare for the wost" may be cliche, but I believe it is essential to survival, even for the most optimistic of us.
    Scorpion---you've got a good point.I have faith one day that SCI's can be cured.I use to pray to walk again.Now I pray just to be able to transfer myself unassisted.Walking is what I do in dreams,not in my future.
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  5. #15
    I too believe that a cure is coming but the continual prediction of a cure in five years, which I first heard in hospital nine years ago, and the continual passing of five years from the predictions makes it harder to remain optomistic so I have good days and bad days, which I expect is true of most of us
    I don't know how long it will be before there is a cure that will benefit a wide range of injuries, including long term chronics, but I do believe that as more therapies go into human trials and we start to get results from those trials the rate of progress will accelerate.
    We are aware of a lot of research that, when we first hear about it, sounds so promising and the reason that everything seems to be moving slowly is because even though we hear about all the exciting progress, we are still not walking. I really believe that the knowledge being gained at the moment will make the human trial stage faster and more productive. I don't know how long we have to wait to get to the exponential progress stage, and I don't want to make a prediction that will be little more than a guess, but when we do get there, it will be obvious that a cure is just around the corner.

  6. #16
    The problem is, has been, and will be funding. The second problem is the ignorance of medical professionals about SCI.
    For the "cure", I believe it will be some time yet, as most studies have been done in rats, due to the lack of clinical trials and also the ignorance of medical professionals, which make even case reports unlikely. Humans require more supraspinal (cortex) input for walking, and more elaborate proprioception, etc, than rats do.
    It was unbelievable unlucky and tragic that Chris and Dana Reeve died, and that Bush is in office now.
    Gloria Stefan was briefly paralyzed and has been supporting a lot of SCI research, but an able-bodied celebrity does not make the impact that Chris Reeve did. Actually, of all impacts, Chris Reeve and his high level injury were the most impacting possible. So that was very lucky for the field, although incredibly tragic for Christopher.

  7. #17
    Moderator Obieone's Avatar
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    Lynnifer ....... you are a shinning light here at CC ..... I hope you know that ! I am so very proud of you today and I thank you for giving me a renewed sense of HOPE !!! I am ashamed to say I have rarely allowed my mind to go there - to the idea of Bill ever walking again .... simply because it always seemed just too much to HOPE for .... I believe your poignant and passionate words may have changed that for me !

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  8. #18
    I was in New Jersey last night at the Jim Bennett Foundation Dinner, participating to raise money for Dr. Young and the Spinal Cord Injury Project. It was a lovely event, and I was lost in the opportunity I had to show off the love in my life, when an utterly exhausted Dr. Young came up to speak and drove home in five minutes of speaking a message that has completely humbled me and left me ashamed. He went to China, a nation with a population of SCI who are bereft of hope, to set up human clinical trials that will be appropriate for duplication here in the United States as soon as the government gets out of its own way and gives us the wherewithall to go ahead. He said in that short speech that Americans seem to have lost hope for a cure, and I know that his fear is that momentum will be lost and it will take longer and longer because of despair and apathy. The point he has continually made to me in meetings and discussions is that we as citizens, patients and practioners should be outraged that this science is being outsourced to other countries. We should be making this science available here in this country, much of this work is already in place and ready to go. I sat there ashamed, in a way, that although I have not been complacent in life or career these past two years except for supporting the local rallies here in DC, and some open houses etc in Jersey, and whatever else I can do for the individuals who have personal contact with me in the SCI world, what have I done here at home to advance the science of this cure? It is a big job, and I realized that somehow I really have to do a better job of awareness here at home. I think we have to look around where we live, I think we have to win our neighbors and towns and states to our cause. I think we have to shore one another up and fight off the diminishing hope where the cure is concerned. On top of that I think we all still have to live, like Lynnifer said, but never stop supporting and believing and telling our friends and neighbors why they too, should be supportive and believe. I appreciate all of the comments here today, I was moved by Dr. Young's short tired speech. This is a person who along with Patricia Morton is giving everything and anything they have to see that this cure happens in their lifetime. Regardless of how my career and family changes this year, and no matter what other work demands come my way, I am promising not to give up supporting the cure or making myself available for the members of the website here. Yes politics do get in our way, and now as always any of us and all of us who can make a difference still need to do so.

    Mary
    Last edited by 1 Fine Spine RN; 10-15-2006 at 04:44 PM.
    1FineSpineRN

  9. #19
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    Thumbs up

    Lynnifer for president, or prime minister - what ever lol - great!

  10. #20
    I can try calling this old friend,but she has alot on her plate.Katrina and Bush have made her look bad.
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