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    #91
    Originally posted by lynnifer View Post
    Twitter convo with Fehlings.
    I just for the life of me don't understand why, well I guess I do $$$ of course. Nothing is perfect when it hits the market, get it out there and save some lives. So godamn annoying.

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      #92
      Totally agree. Talk about temper excitement. Today he said it was difficult to answer my questions which I read as, 'Don't bother me.'
      Attached Files
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

      Comment


        #93
        Man it would be really cool to have Wise Young involved here. Basically adding these electrodes to the SCInet trials with the cells and all.

        Comment


          #94
          Originally posted by lynnifer View Post
          Totally agree. Talk about temper excitement. Today he said it was difficult to answer my questions which I read as, 'Don't bother me.'
          My whole hope of this thing have been really tempered. I just don't see how it would do a darn thing for a guy like me who has had no movement or sensation below the level of injury for over 33 years. It's has to be how this works is there are still some alive neurons in the cord and the electrodes excite this still alive dormant neurons thereby giving increased function. With me at least, I'm pretty sure they are all dead around the original injury point, in 33 years nada in the way of return or sensation. I would be shocked (pardon the pun) if this procedure was done and anything changed.
          "Life is about how you
          respond to not only the
          challenges you're dealt but
          the challenges you seek...If
          you have no goals, no
          mountains to climb, your
          soul dies".~Liz Fordred

          Comment


            #95
            I don't know Curt .. at least two researchers now insist they don't die. At least you respond to e-stim. I never did and I have the muscles of a 12yr old who is now an overweight 42yr old .. I was told by someone I trust that I might have a few muscle fibres here and there, but most would be fibrous useless tissue by now. Who knows if a signal would rebuild muscle or what would happen ... and from what I understand 3/4 of the candidates were considered complete. You have kept yourself in shape too.

            I listened to Jerry Silver's presentation carefully and he explains this quite well in a way that I can't. If I was healthy enough, I'd try to get into the trials but am not. I wonder if they'd let you in? Sounds like they want shoe-ins though in incompletes (I may have misunderstood that).

            I can't remember who but someone offered to ask Dr Edgerton questions ... 1) What was the effect on spasms? With the other anecdotal evidence (he did say at this w2w according to Kate's blog that all of them received 'some' improvement in bowel, bladder and sexual function as well as sensation) ... one wonders the effects on pain and spasms. 2) Women! Please recruit women! At least one who is peri-menopausal please! Someone do a study!

            I don't understand the excitement over the ChinaSCINet? More than one person is posting 'add lithium!'. I read Wise's presentation on the blog and even he admits that results were 'all over the map.' The way they were walking was not useful and there is a lack of info on sensation, bbs and can they even move their lower extremities voluntarily in bed? Walking with a walker and someone pulling ropes on you ... paras can already walk with braces if that's how you want to get around. Seriously I wanted to hear good news there ... but I didn't see it? Please educate me if I missed it or didn't understand? Also, bladder improvement - what mention of it there was - is thought to be crede. What researcher/physician would allow that now that we know what happens with that long-term? Here I sit with a damaged urethra, enlarged vessel in my chest from 25+yrs of that! That was disappointing to read - and quite dangerous for the participants, not to mention a few that broke bones.

            You've probably see more 'a-ha' moments than me, as I've only been paying attention for the last 12yrs ... but this Edgerton thing had better be fruitful in that it makes it to market ASAP. Fine-tune it later on. Many of us older folk don't have another 30yrs. I'm not sure my psyche could take another disappointment. Plus - I'm holding off on permanent bladder surgery in hopes of something better and am in the middle of a terrible cooking infection to the point where I'm afraid. This could let me go back to work which is another bonus in my book. Could possibly reach retirement so it would change my life for the better.
            Last edited by lynnifer; 19 Oct 2014, 5:31 AM.
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

            Comment


              #96
              Oh ya, I'm sure they do want incompletes, you can make the results looks a lot better with incompletes. My Original doc told me the nerves were dead never to be reborn at the site of my injury and that kind of stuck with me, he was right.
              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              Comment


                #97
                Originally posted by Curt Leatherbee View Post
                Oh ya, I'm sure they do want incompletes, you can make the results looks a lot better with incompletes. My Original doc told me the nerves were dead never to be reborn at the site of my injury and that kind of stuck with me, he was right.
                Courtine is planning to start with ASIA C patients because they have more intact axons crossing the injury site. They believe epistim may produce better functional recovery with incomplete SCI.

                A person I know ASIA D about 25 years post, next week is suppose to be implanted with Edgerton/Harkema epistim. I am not sure how she worked things out. I believe she is not part of the trial, but I could be wrong.

                Paolo
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  #98
                  I can believe that it really would help out those sort of injuries, but a true complete, I'll believe it when I see it work on myself if I ever have it done within the next 20 years.

                  Originally posted by paolocipolla View Post
                  Courtine is planning to start with ASIA C patients because they have more intact axons crossing the injury site. They believe epistim may produce better functional recovery with incomplete SCI.

                  A person I know ASIA D about 25 years post, next week is suppose to be implanted with Edgerton/Harkema epistim. I am not sure how she worked things out. I believe she is not part of the trial, but I could be wrong.

                  Paolo
                  "Life is about how you
                  respond to not only the
                  challenges you're dealt but
                  the challenges you seek...If
                  you have no goals, no
                  mountains to climb, your
                  soul dies".~Liz Fordred

                  Comment


                    #99
                    Curt weren't the 3 out of 4 complete in the first trial ??? Did I misread it? That's why it's so amazing.
                    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                    Comment


                      Yes, I remember that and I was excited because of it. But like you were saying I too am less enthusiastic about this at this point as it is just so hard to find information about it and I've seen so many other things just fade away over time.
                      "Life is about how you
                      respond to not only the
                      challenges you're dealt but
                      the challenges you seek...If
                      you have no goals, no
                      mountains to climb, your
                      soul dies".~Liz Fordred

                      Comment


                        Originally posted by lynnifer View Post
                        Totally agree. Talk about temper excitement. Today he said it was difficult to answer my questions which I read as, 'Don't bother me.'
                        Why would Dr. Fehlings even have the answer to those questions? He wasn't involved in the original Harkema epi stim trial. He did not design the study and had no input as to the outcome measures they measured. That's why it's hard for him to answer your questions...he has no idea because he wasn't involved.

                        The reason the info on BB&S return is only anecdotal is because Harkema et. al couldn't have predicted those functions would return, and therefore did not evaluate them. That is why the next "Big idea" trial is focusing solely on measuring the return of BBS and autonomic functions. You will have your answers when that trial is complete.

                        Comment


                          Originally posted by Curt Leatherbee View Post
                          Oh ya, I'm sure they do want incompletes, you can make the results looks a lot better with incompletes. My Original doc told me the nerves were dead never to be reborn at the site of my injury and that kind of stuck with me, he was right.
                          Getting an implant to market costs $120 million.

                          Getting the "transcutaneous" to market can help offset the cost of the $120 million, so thats what we are trying to do. The transcutaneous itself is $5. That?s what we need. We need $2 million to development for the implantable, and another $70 to get it to market.
                          http://spinalcordresearchandadvocacy.wordpress.com/

                          Comment


                            Originally posted by paolocipolla View Post
                            I am not sure how she worked things out. I believe she is not part of the trial, but I could be wrong. Paolo
                            Probably going to Bieke in China...
                            http://spinalcordresearchandadvocacy.wordpress.com/

                            Comment


                              Originally posted by tomsonite View Post

                              The reason the info on BB&S return is only anecdotal is because Harkema et. al couldn't have predicted those functions would return, and therefore did not evaluate them. That is why the next "Big idea" trial is focusing solely on measuring the return of BBS and autonomic functions. You will have your answers when that trial is complete.
                              That's my understanding, too. There will be six parameters studied in the Big Idea: cardio, sexual function, bowel, bladder, voluntary movement, and temperature regulation.

                              I asked Reggie straight up: do the four guys have orgasm back? I could hardly believe it when he said he wasn't exactly sure, until I remembered that this wasn't his project. He did say that he knows for certain that all of them have stopped using viagra. LOL, doesn't he realize what we're all dying to know?

                              You've probably all seen this, but here's the pitch to get the Big Idea funded. Share it, for god's sake. We need this to happen, and it's not going to if there's no $$.

                              Comment


                                Originally posted by GRAMMY View Post
                                Probably going to Bieke in China...
                                No, not China.

                                As you know the stimulators have been used for long time for neuropathic pain and is just a medical device, so it is not difficult to get the approval of medical autorities to use them for a different indication.
                                Reggie and Harkema do not have the exclusive.

                                Paolo
                                In God we trust; all others bring data. - Edwards Deming

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