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  • And therein lies the problem. I do know of the ASIA scale. The ASIA scale that puts me and someone who has reflexes and can move muscles below their injury in the same category. That makes a very easy way to manipulate results. Pick the injuries that will show the most improvements on a scale that is based on sacral sensation, instead of individual functionality.

    But I also see and know where the heat comes from in this section. Calling people tools, and acting like they don’t understand suffering because they’re a para? Condescending questions of do we know as much as you do about an outdated injury scale. No wonder people give you a load of shit...I’d say you deserve it. I’m sure it gets tiresome with all the questions and criticism. People saying you’re not accomplishing what you believe you’re accomplishing, but that’s what you signed up for. To be on the frontline against a life changing injury. Calling people names and talking down to people only makes you look petty and defensive.

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    • Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

      The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

      Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

      You should read the attached published paper that summarizes the clinical trial.
      Attached Files

      Comment


      • Originally posted by Jim View Post
        Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

        The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

        Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

        You should read the attached published paper that summarizes the clinical trial.

        It looks like the videos on that link have since been taken down (at least they are gone for me now...they were there a few months ago)
        Jim ,if that wasn't the scinet trial ,do you know what trial that was ? Neurogel perhaps? Because I am pretty sure the neurogel trial is also doing their rehab there. I think
        "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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        • Originally posted by lunasicc42 View Post
          It looks like the videos on that link have since been taken down (at least they are gone for me now...they were there a few months ago)
          Jim ,if that wasn't the scinet trial ,do you know what trial that was ? Neurogel perhaps? Because I am pretty sure the neurogel trial is also doing their rehab there. I think
          I just watched before, doesn't work in google chrome. I don't even know if that patient was a part of any trial.

          Comment


          • Originally posted by Jim View Post
            Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

            The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

            Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

            You should read the attached published paper that summarizes the clinical trial.
            Thank you Jim, I really mean it.

            For the rest let's agree to desagree.

            Time will tell.. Hope the US trial will start soon, so time will tell soon.

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

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            • Any update on that US trial opening by any chance?
              Injured on July 8th 2017 at 28 years old.
              Fractured C4 - C7, Incomplete.

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              • Originally posted by Vindex View Post
                Any update on that US trial opening by any chance?
                NEVER!!!!

                Haha naw but for real. The wait and silence are killers...maybe Jim can chime in.
                "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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                • Still a bunch of meetings/workshops before recruiting will begin. Not guesstimating a date.

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                  • I signed up for this but not holding my breath that i'll be chosen. So has anyone tried to get the 6.6.6 program going on their own? I'm going to see a Rehab doc next week to find out if anything similar is available locally.
                    Last edited by crispy1981; 02-24-2020, 12:00 AM.

                    Comment


                    • Originally posted by Jim View Post
                      Paolo, you accused me of misleading this community, again, and I explained why you were dead wrong. As usual, no response, don't have the integrity to say, my bad, I now understand. ASIA scores don't matter to you, SCIM scores, nonsense, WISCI, what is that? This therapy has given degrees of freedom to most who participated, doesn't matter to you.

                      Every neurosurgeon, dr, and nurse in the Hong Kong/China trials volunteered their time, because they care deeply. There are 80,000 spinal cord injuries per year there, people are suffering big time. You must not understand that, being a para in Italy.

                      Regarding the videos you saw? Who even knows what you saw? You said you received 'reports' about patients in our China trial, but they weren't even in the hospital where the trial occurred. There are videos on this website of some who were in the trial, I haven't taken them down. Any video that gets out is fine by me. I have shared videos with several CC members. Not Paolo, because you are a tool.

                      Link to the videos mentioned on this site? Can't find anything by search
                      "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

                      Comment


                      • Update: Had my appointment with local rehab center (they just opened it 2 yrs ago in my city and i didn't know about it!). The doc is going to get me evaluated to use their exo skeletal system. They hadn't heard of the China trials nor what Dr Young is starting in the US. Seemed unimpressed since he said it's 'gaited walking' but he felt standing is essential to SCi health. I will keep you guys updated with my progress if desired.

                        Comment


                        • Originally posted by crispy1981 View Post
                          Update: Had my appointment with local rehab center (they just opened it 2 yrs ago in my city and i didn't know about it!). The doc is going to get me evaluated to use their exo skeletal system. They hadn't heard of the China trials nor what Dr Young is starting in the US. Seemed unimpressed since he said it's 'gaited walking' but he felt standing is essential to SCi health. I will keep you guys updated with my progress if desired.
                          Please do.

                          Comment


                          • Originally posted by crispy1981 View Post
                            Update: Had my appointment with local rehab center (they just opened it 2 yrs ago in my city and i didn't know about it!). The doc is going to get me evaluated to use their exo skeletal system. They hadn't heard of the China trials nor what Dr Young is starting in the US. Seemed unimpressed since he said it's 'gaited walking' but he felt standing is essential to SCi health. I will keep you guys updated with my progress if desired.
                            What did he mean by gaited walking?

                            Edit: to add... these people had complete injuries many of whom have not been up and ambulating in many years. For anyone ( especially a professional in physical therapy) to say they are not impressed because they needed a lot of assistance is absurd to me.

                            Don't get me wrong, this is far from a cure all. Unfortunately so far they have not returned volitional movement. But regardless, it is quite impressive!!
                            Last edited by Mitchitsu; 02-26-2020, 12:40 PM.

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                            • Yes, i wouldn't pay any attention to the doctor i interacted with. He admitted he is not an SCi expert even though the center has about 50 SCi right now. His rehab center is a 'catch all' for folks that need rehab from all types of injuries. I'm just glad we actually have a rehab center now in Des Moines and i hope i can get that center educated on the Trials and perhaps get something started there for 6,6,6. I don't think the standing therapy he is focussed on is nearly as useful as the trials. Correct me if i'm wrong but i believe the trials are using electrical stim to simulate the walking during 6,6,6 which actually engages our muscles and apparently reactivates the sacral Neurological system too?.

                              Using the ekso GT he is evaluating me for might not be bad prep for the 6,6,6 however...not sure. https://www.youtube.com/watch?v=-ED3Spz2ISA

                              Jim, is it possible to get your assistance with introducing my doctor/Rehab center about the trials? I don't think my doctor (or anyone for that matter) loves hearing from a patient something they are supposed to be a subject matter expert on.
                              Last edited by crispy1981; 02-26-2020, 02:53 PM.

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                              • I don't think electrical stim was part of it but Jim could give you more details on that. It might be something they are looking into and weighing the options on, but I don't remember seeing it as part of the original trials overseas.

                                During Wise Young's open houses he did mention some ideas they were throwing around to help complement the exercise in America. Things like vibration plates. But I don't know if they are still expecting to use any of those things. My guess is that they aren't.

                                It is great to have a place like that by you. I wish I had something by me. There is nothing. In fact I have one of the best research facilities / colleges 10 minutes from me, with all the equipment to run a great facility and help people and I can't get them to do anything. It just sits there. All those funds to get the equipment and in two years I think I was there a total of 4 times... that type of thing is enough to drive you mad. If they would let me strap on this stim and walk on the treadmill for a few hours a day, I would probably be running the New York Marathon in a year LOL.

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