Announcement

Collapse
No announcement yet.

Spinal Cord Injury Network USA (SCINetUSA)

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Jim,
    Forgive me for not being up to date with regulations but, the fda has 90 days to respond correct? Also the fact that it took longer to write the paper is that a good or bad thing? Or maybe just SOP. Anyway good luck Dr. Young and team!

    Comment


      Originally posted by MomNoah View Post
      There have been studies done, that with intense locomotive training the central pattern generator kicks in, which allows the person to walk, turn and stop, without a change in their lower extremities score. The people in these studies also cannot voluntarily move their legs lying down. I wonder how much of this research by Wise is kick starting the CPG due to intense rehab and nothing to do with the medication. I think we will see a clear sign of this in the US study since they will have one group with just rehab.
      I'm incomplete ASIA C and this is how I walk, using the central pattern generator, I started walking this way on my own about 6 months after my accident. In a couple of months I'll be going to Kunming to give the 6.6.6 program a try, see what happens when someone with some connection does the intense locomotive training. I've been trying to get doctors to include us incompletes in such things, more data helps everyone and answers a lot of questions in the differences between connection.

      I just found out that deep brain stimulation helps Asia C and D walk practically normal in mice, yet no human tests. WHY???????? if we can get a fraction of the SCI community back to walking why are we not doing it? https://www.ncbi.nlm.nih.gov/pubmed/24154600
      https://www.youtube.com/watch?v=R3iCFyjhDRs

      Comment


        spoke too soon, currently in trial in Switzerland. concludes in a year. god I hope this works.

        https://clinicaltrials.gov/ct2/show/NCT03053791

        Comment


          Originally posted by Imight View Post
          I'm incomplete ASIA C and this is how I walk, using the central pattern generator, I started walking this way on my own about 6 months after my accident. In a couple of months I'll be going to Kunming to give the 6.6.6 program a try, see what happens when someone with some connection does the intense locomotive training. I've been trying to get doctors to include us incompletes in such things, more data helps everyone and answers a lot of questions in the differences between connection.

          I just found out that deep brain stimulation helps Asia C and D walk practically normal in mice, yet no human tests. WHY???????? if we can get a fraction of the SCI community back to walking why are we not doing it? https://www.ncbi.nlm.nih.gov/pubmed/24154600
          https://www.youtube.com/watch?v=R3iCFyjhDRs
          Tell me more about your Kunming trip. I'd be interested in seeing if it would help me.

          I'm an L1 incomplete. Nobody seems to be including us incompletes or anything below T12. All the clinical trials I've ran across is T12 and above.

          Comment


            Originally posted by #LHB# View Post
            Jim,
            Forgive me for not being up to date with regulations but, the fda has 90 days to respond correct? Also the fact that it took longer to write the paper is that a good or bad thing? Or maybe just SOP. Anyway good luck Dr. Young and team!
            Lee, before I took medical leave the paper was 1,000 pages, now it's 1,500. Not good or bad.

            Originally posted by Jennifer1 View Post
            Tell me more about your Kunming trip. I'd be interested in seeing if it would help me.

            I'm an L1 incomplete. Nobody seems to be including us incompletes or anything below T12. All the clinical trials I've ran across is T12 and above.
            Jennifer, the following was written by Dr. Young. (Our lab has been concentrating on therapies for lumbosacral injuries.)

            The lumbosacral spinal cord is located at T11-L1. It contains the neurons (gray matter) that innervate the muscles of the leg. Damage to the lumbosacral cord results in loss of gray matter including the neurons responsible for innervating muscle and the circuitry for reflexes and programmed movements. When you have flaccid paralysis, you don't have spasticity.

            I believe that restoring function to lumbosacral injuries will require neuronal replacement. Neural stem cells can make neurons and some animal studies suggest that they can also replace motoneurons. There are several sources of immune-compatible neural stem cells. One is induced pluripotent stem (iPS) which can be differentiated to neural stem cells. The other is autologous call pluripotent adult stem cells which can be differentiated into neural stem cells, including the MUSE cells described by Mari Dezawa.

            Please note, however, that much research still needs to be done to find out the best kind of cells to transplant to replace motoneurons, to get these cells to send axons out of the spinal cord to innervate muscle, to regenerate sensory and descending axons to connect with these neurons to reform reflex circuits, and to program the spinal cord for micturition (urination), bowel movements, walking, and other programmed motor function.

            People who have injuries to L2 or lower segments will have primarily spinal root (cauda equina) injuries. These roots need to be regenerated. Axons must be coaxed to grow into the spinal cord. Motor axons must be grown from the spinal cord into the muscle. If the injury is close to the spinal cord, motoneuronal replacement may be necessary.

            Finally, flaccidity (complete loss of muscle tone) usually results in marked atrophy of muscles. For a long time, clinicians thought that denervated muscles could not be restored. However, a group in Vienna has reported that very intense electrical stimulation of muscle can not only maintain but restore denervated muscles.

            I know that the reversal of flaccid paralysis sounds daunting but I think that we will be surprised by how flexible the spinal cord is.

            Wise

            Comment


              Originally posted by Jennifer1 View Post
              Tell me more about your Kunming trip. I'd be interested in seeing if it would help me.

              I'm an L1 incomplete. Nobody seems to be including us incompletes or anything below T12. All the clinical trials I've ran across is T12 and above.
              my friend here in china whom i actually met off this site lives in my city and she too is L. they denied her, stem cells are also useless. its impossible because of grey matter, as jim posted its a different kind of paralysis. im spastic. meaning my muscles tense as soon as I start moving, this then helps with walking. its kind of like a Frankenstein walk but because i have some voluntary muscle function/control i can 'break' through the stiffness. problem is, i cant control my bouncy feet, think parkinson hands. its shaking all over the place, sometimes its good, some times its crazy, it gets real dangerous when im showering and all i can do is pause and relax myself. as for walking, my left leg is strong it can breakthrough it all, i almost have full control over it, but my right leg nope, my quad will lock up every few steps. THIS is why i want to try the deep brain stimulation, stop the bouncy feet and lock up and i can walk EASILY. if ive had a couple of shots of vodka my nervous system calms and i can walk so smooth, but then an hour later bam, its back to frankenstein. and i cant take shots of vodka everytime i want to walk hahaha.

              Comment


                Originally posted by Imight View Post
                my friend here in china whom i actually met off this site lives in my city and she too is L. they denied her, stem cells are also useless. its impossible because of grey matter, as jim posted its a different kind of paralysis. im spastic. meaning my muscles tense as soon as I start moving, this then helps with walking. its kind of like a Frankenstein walk but because i have some voluntary muscle function/control i can 'break' through the stiffness. problem is, i cant control my bouncy feet, think parkinson hands. its shaking all over the place, sometimes its good, some times its crazy, it gets real dangerous when im showering and all i can do is pause and relax myself. as for walking, my left leg is strong it can breakthrough it all, i almost have full control over it, but my right leg nope, my quad will lock up every few steps. THIS is why i want to try the deep brain stimulation, stop the bouncy feet and lock up and i can walk EASILY. if ive had a couple of shots of vodka my nervous system calms and i can walk so smooth, but then an hour later bam, its back to frankenstein. and i cant take shots of vodka everytime i want to walk hahaha.
                Yes you can Imight! You may fall more often but it sounds like a hell of a drinking game to me! Lol.

                Comment


                  That's so exciting! Do you use any devices to walk? Noah is still in full harness support, but this new movement is very exciting. Plus he is 2, not exactly an ideal age to ask him to try harder or work harder lol.

                  Comment


                    yea i use forearm crutches but rarely these days, takes too much energy for anything possible outdoors for long distances unfortunately. i used too back in the days, i dunno maybe after the 6.6.6 program that will change.

                    Comment


                      Originally posted by Imight View Post
                      yea i use forearm crutches but rarely these days, takes too much energy for anything possible outdoors for long distances unfortunately. i used too back in the days, i dunno maybe after the 6.6.6 program that will change.

                      I thought that they are considering changing it to a 3.3.3. Program
                      "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


                        Originally posted by lunasicc42 View Post
                        I thought that they are considering changing it to a 3.3.3. Program
                        Not in China.

                        We will do as close to as possible to 6-6-6, in the US.
                        Last edited by Jim; 12 Feb 2018, 9:56 PM.

                        Comment


                          My mitsake, swore I read that somewhere
                          "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


                            Originally posted by lunasicc42 View Post
                            My mitsake, swore I read that somewhere
                            You prob heard it will be tough to do 6-6-6 in the US because of the constraints of our existing rehab system.

                            Comment


                              Jim,
                              Was the paper submitted? Why was the paper held up? They have 90 days to respond correct? Thanks.

                              LB

                              Comment


                                When I went on medical leave the paper was 1,000 pages, it's now 1,500. Just a matter of taking time and getting it correct.

                                90 days, yes.

                                Comment

                                Working...
                                X