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Thread: What do you have to lose?

  1. #21
    Quote Originally Posted by Buck_Nastier
    Once you're paralyzed, you're instantly a burden, not to mention
    physically useless.

    So I don't blame anyone for losing patience and doing what they can
    to restore some function, even if the risks include death.

    Who wants to be an invalid for the rest of their life?
    Buck,

    Nobody is blaming anybody and I think that everybody here understands the desperation. On the other hand, this does not justify the illogical and irrational statements that a person has nothing to lose. It is simply not true. There is of course much more to lose than what I listed.

    We all know of depressed people with spinal cord injury. However, we also know many people with spinal cord injury who have many good reasons to live, as well as able-bodied people who don't want to live. Spinal cord injury is neither necessary nor sufficient to deprive people of reasons to live.

    Death is not the worst thing that could happen to you with an experimental therapy. If you were to get AIDS, hepatitis, cancer, or an auto-immune condition as a result of the treatment, that would be worse that what you and possibly suffering that may be worse than just dying from the treatment.

    You certainly can lose function. Some people think that they are not going to lose any function if they are "complete". This is not true. Consider the following:
    • You may lose neurons below the injury. If you do, replacing those neurons will be longer and harder to do.
    • You may have an ascent of injury level. If you have a cervical spinal cord injury, the loss of even one level could potentially be devastating.
    • You may get neuropathic pain that you do not have or worse neuropathic pain than you are getting.
    • You may lose bowel and bladder function, erection, and ejaculation.
    • You can lose blood pressure control.
    • You can get constipation.
    • You may get flaccid anal and bladder sphincters and thereby have incontinence.
    • You may get a stroke and brain damage.

    I am not saying the above just to scare people but it is not true that people have nothing to lose. Everybody has a great deal to lose and it is not just your life.

    Wise.

  2. #22
    Quote Originally Posted by Ivica Rod
    in croatia there is only one word for poeple like us (SCI) INVALID.
    It is time to change Croatia. Wise.

  3. #23
    Some may lose sensation where it once existed...some may lose a few motor units that allowed them to be a functional driver, computer user, manual chair pusher etc...some may experience psychological detriments (including major depression) as the result of unmet expectations and/or psychosocial detriments..."Didn't you have that stem-cell thing? Oh, so you still can't walk?"

    The results may vary for everyone, but everyone must be aware that you very well may have something (or many things) to lose.

  4. #24
    Invalid, handicapped, crippled...whatever. If you see yourself as "useless" in any capacity, others will have a difficult time seeing otherwise.

    I don't encourage the general public to use any of these terms, as my mostly paralyzed body is certainly not useless.

  5. #25
    Banned adi chicago's Avatar
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    Quote Originally Posted by Ivica Rod
    in croatia there is only one word for poeple like us (SCI) INVALID.
    here [romania] ab use the invalid word to attack each other shame on them.
    sick and crazy attitude.no one called me invalid...yet...because of my history ,brain , look , education level and my personality.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  6. #26
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by Wise Young
    Buck,

    Nobody is blaming anybody and I think that everybody here understands the desperation. On the other hand, this does not justify the illogical and irrational statements that a person has nothing to lose. It is simply not true. There is of course much more to lose than what I listed.

    We all know of depressed people with spinal cord injury. However, we also know many people with spinal cord injury who have many good reasons to live, as well as able-bodied people who don't want to live. Spinal cord injury is neither necessary nor sufficient to deprive people of reasons to live.

    Death is not the worst thing that could happen to you with an experimental therapy. If you were to get AIDS, hepatitis, cancer, or an auto-immune condition as a result of the treatment, that would be worse that what you and possibly suffering that may be worse than just dying from the treatment.

    You certainly can lose function. Some people think that they are not going to lose any function if they are "complete". This is not true. Consider the following:
    • You may lose neurons below the injury. If you do, replacing those neurons will be longer and harder to do.
    • You may have an ascent of injury level. If you have a cervical spinal cord injury, the loss of even one level could potentially be devastating.
    • You may get neuropathic pain that you do not have or worse neuropathic pain than you are getting.
    • You may lose bowel and bladder function, erection, and ejaculation.
    • You can lose blood pressure control.
    • You can get constipation.
    • You may get flaccid anal and bladder sphincters and thereby have incontinence.
    • You may get a stroke and brain damage.

    I am not saying the above just to scare people but it is not true that people have nothing to lose. Everybody has a great deal to lose and it is not just your life.

    Wise.
    You know what I think. Enough is enough. I am hoping that this video/documentary I have been working on makes Sundance Film Festival! More exposure for SCI...not to mention a couple big music artists in the video. I have 5 guys working on my project and a couple are USC film grads. Look what happened to Al Gore and Global Warming.

    Anyways, Dr. Young I think we all have heard everything 100x. if you dont have a cure you dont. If you do, you do. There's way too much BS and I don't believe anything until I see it. People who get experimental procedures are uneducated, arrogant and completely unrenowned period. We are paralyzed and CANNOT WALK, STAND, BBS- PLEASE enuff. AB will never understand no matter who u are. I just hope that we are not being strung along by this community to make us believe something when there might be nothing.

    We all appreciate your efforts and I wonder how you have so much time for the internet when you are potentially ( so many people say ) on the verge of a breakthrough in medical history here. Someome needs to GD fix us and like yesterday!

    I mean seriously how many of us really have a chance? Everytime I come to CC it's like the birthdays are the saddest everyone is turning 21-29 most of the time. Truly truly sad. After 30 years of studying this damn cord can we be fixed???!!!??
    Last edited by spidergirl; 06-04-2007 at 04:32 AM.

  7. #27
    Quote Originally Posted by spidergirl
    You know what I think. Enough is enough. I am hoping that this video/documentary I have been working on makes Sundance Film Festival! More exposure for SCI...not to mention a couple big music artists in the video. I have 5 guys working on my project and a couple are USC film grads. Look what happened to Al Gore and Global Warming.

    Anyways, Dr. Young I think we all have heard everything 100x. if you dont have a cure you dont. If you do, you do. There's way too much BS and I don't believe anything until I see it. People who get experimental procedures are uneducated, arrogant and completely unrenowned period. We are paralyzed and CANNOT WALK, STAND, BBS- PLEASE enuff. AB will never understand no matter who u are. I just hope that we are not being strung along by this community to make us believe something when there might be nothing.

    We all appreciate your efforts and I wonder how you have so much time for the internet when you are potentially ( so many people say ) on the verge of a breakthrough in medical history here. Someome needs to GD fix us and like yesterday!

    I mean seriously how many of us really have a chance? Everytime I come to CC it's like the birthdays are the saddest everyone is turning 21-29 most of the time. Truly truly sad. After 30 years of studying this damn cord can we be fixed???!!!??
    Spidergirl,

    You are wrong about the cure for spinal cord injury. Therapies that restore function in people with spinal cord injury will happen. It will require people to work together and resources that we need to get. People will have to work together to make it happen. We must have clinical trials. These are solvable problems and the cure will happen.

    You may be right about one thing, however. I may be wasting time trying to convince people to make rational decisions concerning the risks and benefits of experimental therapies. The decision is an emotional one. As one friend told to me once, he stopped listening to me because he decided to go and did not want to have doubts about going.

    Please understand that I cannot put hope in your heart. I can give you all the reasons for hope and why I believe that a cure will happen but you are not ready to believe. It's okay.

    Wise.

  8. #28
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    Spidergirl. I’m also quite sure there will be restorative therapies for SCI, just look at some of the promising basic research and animal studies that is going on. Then also remember how little SCI research there is to achieve this, and then imagine how far we would have been today if more research and efforts was directed toward these goals?

  9. #29
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    Quote Originally Posted by spidergirl
    ... I am hoping that this video/documentary I have been working on makes Sundance Film Festival! More exposure for SCI...not to mention a couple big music artists in the video. I have 5 guys working on my project and a couple are USC film grads. Look what happened to Al Gore and Global Warming.
    This might be good Spider’, great. I understand that the Sundance Film Festival is quite a big event and reaches quite a few as for getting movies and videos to show to the public. Is it possible you could elaborate more on the plot of it?

  10. #30
    Dr. Young it seem that your stance on experimental treatments have changed. I can remember a few years ago you didnt have such a stanch stand against people going places to recieve experimental procedures, but now you seem far more against it. You never seemed "for" experimental procedures but you seemed to take more of a "wait and see" stance now you appear to be in complete opposition. What is it about experimental procedures now adays that has tipped you over the edge? do you feel experimental procedure are taking resources away from clinical research? Why isnt there room for both? I'd bet people who undergo experimental procedures probably don't contribute much to the community anyway. Didn't christopher Reeves undergo an experimental procedure in Israel? I may be wrong...

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