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    #76
    Originally posted by niallel View Post
    What does that mean in practical terms though. You don't need to use a catheter, but how do you get it into the toilet from your chair?
    So you need to use a catheter or you make a mess.

    It would be good if there were details about what these statements about bladder, bowel recovery actually mean in real terms.
    Do you have sensation to know when you have to go?
    Can you control going?
    Can you hold on when you need to go so you can get to the bathroom?

    All of these studies talk in general terms, but we want to know the practical details to see if it would make a difference to our lives.
    This has also been my concern
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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      #77
      Nicksdad, your post was thoroughly refreshing, and spoken as one who is not shackled by fear of saying it out loud. It's the elephant in the room.

      Niallel, YEP!,...'how do you get the pee into the toilet from your chair without cathing' even if you could hold off on peeing? And (bingo!) when medical authorities (doctors, therapists, nurses) gloss over the practical details of proceedures, that really doesn't help us.
      Female, T9 incomplete

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        #78
        Sensation seems parallel to the "cure"...as in both need regeneration and proper reconnection to become a reality. Would also seem to cure so many, if not all, CNS diseases. I hope we're closer than it seems

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          #79
          This is the kind of thing I think will come first: http://time.com/4715028/paralysis-brain-arm/
          T3 complete since Sept 2015.

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            #80
            This is pretty cool: https://spinalcordresearchandadvocac...er-severe-sci/
            T3 complete since Sept 2015.

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              #81
              Originally posted by Mize View Post
              Assisted waking isn't a cure and I'd argue almost anyone doing the intensive gait training would improve. By bladder and bowel, you mean the ability to self-manage your own bladder and bowel program, not that you won't need to cath or use digital stimulation to relieve yourself.
              I did not say it was a cure, it is substantial progress.

              A separate study is being done at Tongren Hospital in China without cells, only walking training (WT) or WT + untethering surgery. Preliminary results show 1/4 of subjects are regaining the ability to ambulate, but not nearly as well as in the ChinaSCINet Phase II. None regained bowel/bladder function. Most of the participants in Phase II went from being dependent for bowel/bladder care, to independent. Many no longer need to cath or do digital stimulation. This will all be analyzed much more closely in the IIb trials.
              Bowel and bladder didn't come back until a year after treatment which suggests regeneration, as well the DTI images showing growth.

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                #82
                Thanks for clarifying Jim. As a scientist I try to restrain my optimism in spite of desperately wanting to walk again. I am very hopeful your research will lead to improvements. If it seems I am not it's likely just the skeptic wanting to temper expectations so as not to be too disappointed.
                T3 complete since Sept 2015.

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                  #83
                  Originally posted by Mize View Post
                  The group has started their beginning clinical trials.

                  https://spinalcordresearchandadvocac...trial-for-sci/
                  http://spinalcordresearchandadvocacy.wordpress.com/

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                    #84
                    Thanks Grammy, I missed when that video was posted. I know each study has to create a baseline for what results they can get independently, but I would love to see this combined with Dr. Wise's stem cell treatment.

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                      #85
                      hey nphuskers, whats your level of injury and how long have you been injured?
                      "That's not smog! It's SMUG!! " - randy marsh, southpark

                      "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                      2010 SCINet Clinical Trial Support Squad Member
                      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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                        #86
                        Originally posted by Jim View Post
                        I did not say it was a cure, it is substantial progress.

                        Most of the participants in Phase II went from being dependent for bowel/bladder care, to independent. Many no longer need to cath or do digital stimulation. This will all be analyzed much more closely in the IIb trials.
                        Bowel and bladder didn't come back until a year after treatment which suggests regeneration, as well the DTI images showing growth.
                        If the patients switched to just wearing diapers, they could say after treatment that they no longer cath or digital stimulation. Those are very ambiguous terms that can mean very different things. Can the completely injured patients feel that their bladder is full? Not dysreflexia feeling, but normal able-bodied sensation of full bladder. Can the patients control the bladder sphincter? Can they hold in the urine and void via their own brain command? The same goes for bowel function.

                        If they cannot be answered, I don't think its fair to publicly say that bowel and bladder came back or that they no longer need to cath. That gives off the impression that patients recovered bowel/bladder connections from the brain to bowel/bladder.

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                          #87
                          Many unanswered questions...
                          2010 SCINet Clinical Trial Support Squad Member
                          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                            #88
                            Originally posted by Nowhere Man View Post
                            If the patients switched to just wearing diapers, they could say after treatment that they no longer cath or digital stimulation. Those are very ambiguous terms that can mean very different things. Can the completely injured patients feel that their bladder is full? Not dysreflexia feeling, but normal able-bodied sensation of full bladder. Can the patients control the bladder sphincter? Can they hold in the urine and void via their own brain command? The same goes for bowel function.

                            If they cannot be answered, I don't think its fair to publicly say that bowel and bladder came back or that they no longer need to cath. That gives off the impression that patients recovered bowel/bladder connections from the brain to bowel/bladder.
                            Very fair and precise criticism. Shows just how fucked and far from a "fix" we really are

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                              #89
                              What s going on here? Is anybody to answer in these basic question? or to give an exactly scientifical description about the results and solve these bewilderment?

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                                #90
                                Originally posted by lampros View Post
                                What s going on here? Is anybody to answer in these basic question? or to give an exactly scientifical description about the results and solve these bewilderment?
                                I don't think anyone knows until we get the data from Phase 3 trials which contain large numbers of participants. There's so many variables that need to be acknowledged. Here's a pretty nice list of SCI trials currently underway.

                                https://www.u2fp.org/educate/clinical-trials/
                                http://spinalcordresearchandadvocacy.wordpress.com/

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