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Thread: Who is the cure for?

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  1. #1

    Who is the cure for?

    Wise, I am putting you on the spot not for the first time. You are always so much more optimistic than others in the medical profession about sci cure but then you know the topic better than almost anyone else.

    If, for argument's sake, being wildly optimistic the first clinical trials in ChinaSCINet actually yield a treatment that gets people up and walking is it only the comparatively young that will benefit?

    I'm 53 now and been paraplegic for 29 years - has my time run out? I think it's why some of the younger newer injuries accuse the older ones of not supporting a cure. Well, a lot of the older guys and girls feel it is too late for them - but is that wrong?


    Thanks

  2. #2
    Good question. As a c6-7 quad who's 29 and nearly 12 years post, you and I have more in common than I'd care to admit. I tend to think that 3 years is the same as 30 if spasms are present, but only Dr. Young is qualified to say for sure.

  3. #3

    What is a Cure

    It depends on what you think a cure is? I have been advocating for a cure for years when I first was injured a cure was walking if you ask me today it is not about walking. Having your bowels and bladder function and having feeling being able to transfer is a cure today for me. But I would never turn down walking or stop fighting for Paralysis because it could benefit my child that is not injured or others. It is the secondary conditions that trap us in our bodies and take over our lives. No more Pressure sores, UTI’s and broken bones that don’t heal is my cure 15 years later.

  4. #4
    Christopher Paddon,

    GREAT question! i too feel like my window of opportunity is starting to close. i'm a walking incomplete quad 41 yrs old and 21 yrs post injury. i'm finding it harder and harder everyday to deal with this life. i have decent muscle throughout my legs and arms etc but both my knees and shoulders feel like there shot. i cant sleep at night because the right side of my back spasms and tightens all night long, my doctor says its because of my c4-c5 fusion causing strain on c6-c7 vertabraes. l continue to think that i would benefit greatly from remylination therapy.

    God speed to you Dr Young cause a lot of us are starting to lose the edge we once had.

  5. #5
    I think the "cure" for those of us who are long term injured (I am C6/7 complete post 29 years) may entail more pain than we can possibly imagine, even though many of us suffer greatly from various forms of pain now. Imagine flipping the "cure switch" (I know that is trite and over simplified), turning on all of those neurons and nerve fibers that haven't been communicating with our brains or the pain involved in enervating long dormant muscles. Maybe the "cure" for those of us long injured may be worse than the "disease." I'm am sure researchers have this in mind as they put more pieces of the puzzle together and develop criteria for offering the cure, when it comes, to those of us with spinal cord injuries.

    All the best,
    GJ

  6. #6
    Quote Originally Posted by gjnl View Post
    I think the "cure" for those of us who are long term injured (I am C6/7 complete post 29 years) may entail more pain than we can possibly imagine, even though many of us suffer greatly from various forms of pain now. Imagine flipping the "cure switch" (I know that is trite and over simplified), turning on all of those neurons and nerve fibers that haven't been communicating with our brains or the pain involved in enervating long dormant muscles. Maybe the "cure" for those of us long injured may be worse than the "disease." I'm am sure researchers have this in mind as they put more pieces of the puzzle together and develop criteria for offering the cure, when it comes, to those of us with spinal cord injuries.

    All the best,
    GJ

    This is my greatest concern regarding a cure as well. At what cost would a cure benefit me? To walk again, to be able to pee on a tree would be great, but not at the cost of living in constant pain.

  7. #7
    Thanks Wise

    I guess my next related question is how easily could the treatment be taught to other neurosurgeons and rehab teams?

    The cure may be there in China/US/Europe but in all likelihood myself and others in New Zealand and other places couldn't afford to travel or be able to jump the queue.

    Would you be able to simply fly to New Zealand and teach the Auckland neurosurgeons what to do? Or they simply get instruction over the internet? Or would they need to be comprehensively retrained? (which they may not bother to do)

  8. #8
    Quote Originally Posted by Christopher Paddon View Post
    Wise, I am putting you on the spot not for the first time. You are always so much more optimistic than others in the medical profession about sci cure but then you know the topic better than almost anyone else.

    If, for argument's sake, being wildly optimistic the first clinical trials in ChinaSCINet actually yield a treatment that gets people up and walking is it only the comparatively young that will benefit?

    I'm 53 now and been paraplegic for 29 years - has my time run out? I think it's why some of the younger newer injuries accuse the older ones of not supporting a cure. Well, a lot of the older guys and girls feel it is too late for them - but is that wrong?


    Thanks
    bumpity bump

  9. #9
    Senior Member khmorgan's Avatar
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    My definition of a cure

    My definition of a cure is to restore enough of your spinal column that you are only limited in your recovery by how much you can restore your bones and muscles.

    I'm a C5/C6 incomplete and 45 years post. I know full well that I'll never walk again, and you know, I don't care. Just give me control of my muscles, get rid of the neuropathic pain, and make it my responsibility to do the rest.

  10. #10
    Me at 73 (this month) and 5 years post, T12 incomplete. I'm being optimistic. Hopefully
    the cure will come before I check out.

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