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When will Epidural Stimulation ever be brought to the masses?

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    #76
    Why does the wheel constantly have to be created over and over when it comes to SCI Research? Thanks for the info though Grammy, not trying to shoot the messenger here or anything.
    "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


      #77
      Originally posted by Curt Leatherbee View Post
      Why does the wheel constantly have to be created over and over when it comes to SCI Research? Thanks for the info though Grammy, not trying to shoot the messenger here or anything.
      Oh boy, I can already tell I shouldn't have mentioned the additional trials starting up. One is specifically replicating the Louisville lab results and the other wants to be able to add other things to make a combo chronic treatment that can be taken into human trial if replications work out. Both are good timely efforts being made by the SCI community.

      The initial research results have to be replicated by another laboratory. The same situation is true of other types of therapies such as medications or stem cells. (A lab that isn't affiliated tries to get the same results as Harkema. She cannot do her own replication). Os Stewarts lab at Reeve Irvine and Fischer's lab at Drexel have been funded in the past to run replications. That funding through the NIH dried up a few years ago. I think it was called "Facilities of Research Excellence-Spinal Cord Injury" project to support independent replication. I don't believe the funding was ever reinstated to replicate results on studies done in the spinal cord injury area. It wouldn't make any sense to implant every SCI patient known to man and then later find out there are certain injury levels that do not respond and we're missing critical information.

      A lot of what has been talked about so far has been antidotal observations that hasn't had data gathered on it yet. We don't have enough information to convince insurance companies to allow implants on the entire SCI population and promise everyone some good results. In fact, you said you're not going for the one week trial period because you don't think it will help you much. We need females, cervical, lumbar, thoracic, TM, completes, incompletes etc and what effects it has on all these different grades of SCI... You've seen lots of failed therapies in this community over the years. I think the replications are important so we don't waste time on more Proneurons or Nogo's... As Jablonski explains in the video, the first step to move epidural stimulation out of the lab and into people is by providing the necessary replication studies. He's doing exactly that over at the Mayo for us. His foundation has raised the money to do this. I don't think it will take a great amount of volunteers.

      Why did I even explain how the SCI research wheel is turning?

      Who knows, if that segment is successful, they may be able to build a better stimulator in the future that would not only help with just standing up, but would also help with actual walking. Who knows what the future will bring.
      Last edited by GRAMMY; 2 Mar 2016, 6:47 PM.
      http://spinalcordresearchandadvocacy.wordpress.com/

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        #78
        I guess the future will be bright for the generation of people in a couple hundred years or so. I wonder if when Trump gets in he will have some government funding for Epidural Stimulation ?
        "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


          #79
          Originally posted by Curt Leatherbee View Post
          I guess the future will be bright for the generation of people in a couple hundred years or so. I wonder if when Trump gets in he will have some government funding for Epidural Stimulation ?
          Trump says he'll have money for everything.
          http://spinalcordresearchandadvocacy.wordpress.com/

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            #80
            Like I said before, I've finally accepted my fate. Will die of sepsis due to complications of chronic paralysis.

            My great nephew is 2 in April. Maybe he'll see it in is lifetime.

            Tragic. I so thought I would see something at 12yrs old.
            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


              #81
              lost.
              Attached Files
              "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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                #82
                I've kinda excepted my fate too, just thought there might be something that would help a little bit. I'm back to FES bike riding every other day after having a major operation 7 weeks ago. I'm just gonna do the most I can do the rest of my life and take nothing for granted. I'm kinda not crazy about the idea of another operation with the risks of complications anyhow at this point in my life.
                Originally posted by lynnifer View Post
                Like I said before, I've finally accepted my fate. Will die of sepsis due to complications of chronic paralysis.

                My great nephew is 2 in April. Maybe he'll see it in is lifetime.

                Tragic. I so thought I would see something at 12yrs old.
                "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


                  #83
                  Originally posted by lunasicc42 View Post
                  lost.
                  You're probably thinking of the MyoRegulator thread that's currently in clinical trials with the PathMaker company and being FDA "fast tracked".

                  Implantable pain stimulators are already on the market. I doubt implanting pain stimulators into paralyzed people for gaining movement will get much traction with neurosurgeons until they see the proper validation for doing so. It's only a hunch, but I think they'll be wanting an FDA approved device specifically designed for locomotion to implant before the idea gains much speed and becomes readily available at the clinics.
                  Last edited by GRAMMY; 4 Mar 2016, 2:57 AM.
                  http://spinalcordresearchandadvocacy.wordpress.com/

                  Comment


                    #84
                    except this

                    Comment


                      #85
                      I have accepted my fate as well. no cure in my lifetime. I am T-12, 57 years old, and been in this chair 37 years. I will most likely die from a UTI mega bug that cant be treated. I plan to enjoy what life I have until that day comes. Two more "cure in 5 year" cycle's will put me at 67. There may be hope for the 20-somthing generation that are recently injured.


                      Originally posted by lynnifer View Post
                      Like I said before, I've finally accepted my fate. Will die of sepsis due to complications of chronic paralysis.

                      My great nephew is 2 in April. Maybe he'll see it in is lifetime.

                      Tragic. I so thought I would see something at 12yrs old.

                      Comment


                        #86
                        This thread has as much life as a fuckin mausoleum.

                        Comment


                          #87
                          Originally posted by Tbone57 View Post
                          This thread has as much life as a fuckin mausoleum.
                          Loooooool this made my day

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                            #88
                            I have to laugh at 'the masses.' We're so few ... remember how we all thought returning soldiers would speed up research and treatments? Ha!
                            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


                              #89
                              I've been hurt 2 1/2 years. The resistance to progress from able bodied people borders on insanity. Even the resistive behavior of those that spend a tremendous amount of personal resource helping the injured is fascinating (or at least to me). I've laughed inside at some doctor here commenting about the stress of "publishing" for researchers like Jerry Silver. That is truly funny to me. I've been in horrible pain every minute since I hit the ground 2 1/2 years ago. The stress of a publishing deadline is just silly to me now. I can only imagine the total misery that sweet lynnifer has gone through all these years. My heart goes out to you lynnifer. Able bodied people have no clue how much misery we go through. Worse yet are the able bodied family member of injured that become total jackasses because they feel like they have paid their dues. They are a piece of shit and should just shut the hell up. Until someone has SCI STFU. Give me access to all the information and all of the technology. I am a citizen and have contributed to financing all of this research. Let me use whatever the hell I want however I want. If I want to use Jerry Silvers drugs let me work with him on the best dosage and method. If I want to try Invivos new delivery system let me. If I want to try Dr. Young's therapy let me. If I want to commit suicide and I want my family there let me do it with dignity and the help of a doctor. I will even pay for these options. You people have all gone insane with your imposed morality on others.

                              Comment


                                #90
                                Very well said, I agree with you. Sorry this thread did turn a little bit morbid, but aging with this injury is not pretty let me tell you all. When you get over 50 after being paralyzed a long time if it's not one thing it's another thing. You just keep fighting the constant battles to try to survive.
                                Originally posted by Dlevy View Post
                                I've been hurt 2 1/2 years. The resistance to progress from able bodied people borders on insanity. Even the resistive behavior of those that spend a tremendous amount of personal resource helping the injured is fascinating (or at least to me). I've laughed inside at some doctor here commenting about the stress of "publishing" for researchers like Jerry Silver. That is truly funny to me. I've been in horrible pain every minute since I hit the ground 2 1/2 years ago. The stress of a publishing deadline is just silly to me now. I can only imagine the total misery that sweet lynnifer has gone through all these years. My heart goes out to you lynnifer. Able bodied people have no clue how much misery we go through. Worse yet are the able bodied family member of injured that become total jackasses because they feel like they have paid their dues. They are a piece of shit and should just shut the hell up. Until someone has SCI STFU. Give me access to all the information and all of the technology. I am a citizen and have contributed to financing all of this research. Let me use whatever the hell I want however I want. If I want to use Jerry Silvers drugs let me work with him on the best dosage and method. If I want to try Invivos new delivery system let me. If I want to try Dr. Young's therapy let me. If I want to commit suicide and I want my family there let me do it with dignity and the help of a doctor. I will even pay for these options. You people have all gone insane with your imposed morality on others.
                                "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

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