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Thread: Who is the cure for?

  1. #11
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    At almost 26 years old inject me and i will take my chances of breaking a leg to get better.

  2. #12
    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.

  3. #13
    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)

  4. #14
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    If prospective cures come along, some will be brave enough or desperate enough to give it a try. It won't take long until at least the short-term effects are known. Of course, with the complexity of our universe, I'm betting that it still won't be an easy decision, lol. God isn't merciful, he's a comedian.
    C1/C2 walking quad, SCI from 4/2010

  5. #15
    Chris, You shouldnt worry about how to get a treatment until one of them is proven effective. Don't put the wagon before the horse...
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

  6. #16
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    Quote Originally Posted by Donnie View Post
    Chris, You shouldnt worry about how to get a treatment until one of them is proven effective. Don't put the wagon before the horse...
    Great, there are no uphill or downers any no more.


  7. #17
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

    Donnie, when did Dr Xiao say this? Would he say the same thing today? Every time I read this tagline of yours I despair. Dr Young does not seem to agree -- I hope he is right and not Dr Xiao.

  8. #18
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    Quote Originally Posted by mamadavid View Post
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

    Donnie, when did Dr Xiao say this? Would he say the same thing today? Every time I read this tagline of yours I despair. Dr Young does not seem to agree -- I hope he is right and not Dr Xiao.
    Last time I checked Xiao was imprisoned and his planned trials on bb (bowel bladder) for example in Europe and Australia was/is toned down and cancelled. Xiao maybe had some good ideas on bb, but he isn’t a neuro scientists focused on SCI regenerative cures so I think you and any should take his statements for a future cure window with a big grain of salt as for what he was predicting as for SCI cures. I personally, now thinks, listening to him on a couple of conferences in the past, thinks he was more talking about his bb treatments for the money game for himself, and not to help peoples with SCI in the first place. It looks like he is totally off the bb and SCI radar too. And as for SCI cures and regenerative research, he has never been into that, so forget that 50 year prediction telling by a man whom cant predict his own future better than he did. Move on.

  9. #19
    I am also pessimistic about a full blown cure for SCI in the foreseeable future.And there are logical reasons as to why I think like that, but before I cite my reasons as why I think that way, I must mention that this is not a personal affront or offence to anyone, least of all to the researchers and doctors who have devoted their entire life spans and worked long arduous hours in getting us to where we are.

    First and foremost is the gold standard that the scientists have based their 'cure' on. Walking. If a poll is taken of all the SCI's in the world , I can bet my bottom dollar that functional return of BBS would come out tops by a long margin, though I personally would take walking any day , ( would rather cath standing up ! ).Their has to be a shift in their way of thinking.

    Second is the ASIA scale , though it is not perfect , not by a long shot , but it still is the best we have, taking the ASIA scales into account , the trials that are going on or are being planned all have ASIA A as the first volunteers, this to my mind is an error of judgement on the part of the doctors.As ASIA A is the most severe of all the injuries , the doctors are hoping that whatever therapies that are or will be on the anvil would have them show functional return, logically to me ASIA C 's would most likely to benefit from these therapies.Medical research rarely takes giant leaps , more likely it takes baby steps, therapies should target the less severely injured first.For example chemotherapy may not be very successful in stage 4 cancer but it would and is very effective in stage one cancer.

    Third , in all probability acutes will get a 'cure' first then we all chronics actually become quite redundant and slowly get phased out with time so the research automatically comes to a standstill.

    Having said all this I fervently hope that I am proven wrong. It would be the first for me to be proven wrong would actually make feel like a winner.

  10. #20
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    I agree with lakboy.

    Trials should be for all. Should be for chronics also at the same time.

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