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    Originally posted by Jim View Post
    Update

    I assume that LMN injuries are still not involved in it? As I understand it once you get to T9 injuries go more UMM or LMN. My injury is at T9/10 and while I had atrophy and didn?t respond to what used to be the 500 pulse width estim. I do respond to the RTI 3000 pulse width pretty well. I also have a very elastic bladder. So I would say I have both UMN and LMN, so I question the thinking that I and many others would not benefit from this treatment. Any thoughts or updates on LMN research? Thanks!

    Comment


      Thanks Jim.

      Comment


        Thanks for update Jim

        this therapy won’t benefit me as it’s being tested now because I’m Asia D. But I hope it makes it through and becomes available, just to get rid of the wide belief that SCI is untreatable.

        Comment


          Originally posted by Jim View Post
          Update

          This Sounds great but I wouldn't be Totally truthful if I didn't pose the question of 'when will we be about to see actual videos of the patients ' and other media stuff... This type of recovery is something I would like to be able to "see" ideally
          "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
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          Comment


            Lyerly,

            Inclusion for the trial is C5-T10. I attached something Wise wrote about lumbosacral injuries. One of our researchers has been working on this for a few years.
            Attached Files

            Comment


              Jim are y’all not doing untethering anymore? It didn’t say anything about it for SCInetUSA. Also what is the plan of attack for hands?
              Last edited by #LHB#; 10 Jul 2018, 8:38 PM.

              Comment


                Originally posted by Jim View Post
                Lyerly,

                Inclusion for the trial is C5-T10. I attached something Wise wrote about lumbosacral injuries. One of our researchers has been working on this for a few years.
                Thank you!

                Comment


                  Originally posted by Fly_Pelican_Fly
                  re this lumbosacral research : still no sign of an abstract, a hypothesis, a researcher name, a poster, a paper or a grant award. But we'll take your word for it Jim.
                  Like with most low level injuries, I have a great understanding and appreciation that I am fortunate to have full use of my upper body but many of us have BBS issues and we things like atrophy we have to really worry about pressure sores and and muscle tissue becoming fat and possibly too far gone for use it and when a treatment comes.

                  i think it is wrong to exclude LMN injuries from a lot of things like the epidural implant etc. I understood it that peripheral nerves regenerate, making it possible that mine might have and the majority of my problems is in the straight line of the cord. As I mentioned I have a very spastic bladder, so I would expect to possibly benefit with bladder improvement or even recovery but nobody knows until they try. Maybe I won’t benefkt as much as some but think there will be a large varying degree of benefit for most people. LMN treatments seem a long long way off.

                  Comment


                    Originally posted by #LHB# View Post
                    Jim are y’all not doing untethering anymore? It didn’t say anything about it for SCInetUSA. Also what is the plan of attack for hands?
                    If unthethering is necessary, it will be done. I don't think the hand stimulator has been decided on yet. We have a rehab meeting in two weeks.

                    The last thing that has to be worked out for approval is the cell processing. The FDA does not want each hospital processing the cells. (Thawing, spinning down, extracting the mononuclear cells, and preparing for injection. This make complete sense to me, way too much room for human error. We are looking for a company here in NJ that will process all the cells, and deliver them to each hospital ready to be inected.

                    Originally posted by Fly_Pelican_Fly
                    re this lumbosacral research : still no sign of an abstract, a hypothesis, a researcher name, a poster, a paper or a grant award. But we'll take your word for it Jim.
                    This is an ongoing research project for a Ph.D. thesis, not talking about it.

                    Comment


                      Originally posted by Jim View Post
                      If unthethering is necessary, it will be done. I don't think the hand stimulator has been decided on yet. We have a rehab meeting in two weeks.

                      The last thing that has to be worked out for approval is the cell processing. The FDA does not want each hospital processing the cells. (Thawing, spinning down, extracting the mononuclear cells, and preparing for injection. This make complete sense to me, way too much room for human error. We are looking for a company here in NJ that will process all the cells, and deliver them to each hospital ready to
                      Ok. I remember you saying that y’all were going to be looking at different things for hand therapy. Didn’t know if y’all had come up with a “6-6-6” program for hands. If the subjects will be walking 6 hours there will on be a couple hours a day to work on fine motor stuff.

                      Comment


                        Originally posted by #LHB# View Post
                        Ok. I remember you saying that y’all were going to be looking at different things for hand therapy. Didn’t know if y’all had come up with a “6-6-6” program for hands. If the subjects will be walking 6 hours there will on be a couple hours a day to work on fine motor stuff.
                        It takes months to work up to 6-6-6.

                        Comment


                          I take it the walking program is the most expensive and resource intensive part of this due to the need for 2 physio's at a time to be working with the patient.

                          There are never going to be enough physio's to work with everyone, so this will become a blocker to getting any therapy to the masses.

                          Has there been any work done on seeing if robotic gait trainers like Lokomat etc would have a similar result?

                          Comment


                            Originally posted by niallel View Post
                            I take it the walking program is the most expensive and resource intensive part of this due to the need for 2 physio's at a time to be working with the patient.

                            There are never going to be enough physio's to work with everyone, so this will become a blocker to getting any therapy to the masses.

                            Has there been any work done on seeing if robotic gait trainers like Lokomat etc would have a similar result?
                            In the "Walking Program Final" pdf Dr. Young wrote "Where can I get help to do the walking? The walking training is the most expensive part of the therapy. We are talking to the Buddhist Tzu Chi Group in Taiwan (which has millions of volunteers around the world), the Catholic charity Caritas, Rutgers University, and Veterans Administration Hospitals to see if we can establish training standards and accreditation for people to help with the locomotor training. Getting a world-wide training program established will require work and help from many people. We are also are talking with various companies around the world about devices to help restore function to hands and arms."

                            and

                            "Can I walk in facilities other than the hospitals associated with the clinical trial centers? At the present, we are intending to do six weeks of the post-operative training at rehabilitation centers associated with the clinical trials (Kessler Institute for Rehabilitation, Hackensack University Medical Center, Meridian Jersey Shore University Medical Center). After the stepping training, the patients can go to other non-medical facilities for the walking training. For example, we are working with Push-to-Walk to provide the facilities and personnel to supervise the walking. We also are working with the Kinesiology Department at Rutgers University to train people to help
                            with the walking, the Buddhist Tzuchi Foundation which has many volunteers, and Caritas to see if we can recruit volunteers. We will also be talking with the Veteran Administration Hospital."

                            Comment


                              Originally posted by tumbleweeds View Post
                              In the "Walking Program Final" pdf Dr. Young wrote "Where can I get help to do the walking? The walking training is the most expensive part of the therapy. We are talking to the Buddhist Tzu Chi Group in Taiwan (which has millions of volunteers around the world), the Catholic charity Caritas, Rutgers University, and Veterans Administration Hospitals to see if we can establish training standards and accreditation for people to help with the locomotor training. Getting a world-wide training program established will require work and help from many people. We are also are talking with various companies around the world about devices to help restore function to hands and arms."

                              and

                              "Can I walk in facilities other than the hospitals associated with the clinical trial centers? At the present, we are intending to do six weeks of the post-operative training at rehabilitation centers associated with the clinical trials (Kessler Institute for Rehabilitation, Hackensack University Medical Center, Meridian Jersey Shore University Medical Center). After the stepping training, the patients can go to other non-medical facilities for the walking training. For example, we are working with Push-to-Walk to provide the facilities and personnel to supervise the walking. We also are working with the Kinesiology Department at Rutgers University to train people to help
                              with the walking, the Buddhist Tzuchi Foundation which has many volunteers, and Caritas to see if we can recruit volunteers. We will also be talking with the Veteran Administration Hospital."
                              Thanks, that makes it sound like the plan is to train lots and lots of people.

                              If it happens thats great, but I imagine it will be a huge task to accomplish.

                              It would make sense to run a trial group that uses a Lokomat to see if it works as well. If it works just as well it would result in a big increase in sales for them, so it would be a good investment for them to fund it.

                              Comment


                                Here lists some great studies that might be of interest to you pelican:

                                https://www.google.com/amp/s/www.for...ear-round/amp/

                                https://www.inc.com/jessica-stillman...lling-you.html

                                https://www.google.com/amp/s/www.ent...amphtml/281734

                                I know for myself it?s been a work in progress but I wouldn?t be able to do all that I do and lead life I do without that background work.

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