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    #16
    Wise,
    That's great news. Thanks once again for your tireless effort.
    Clayton

    Originally posted by Wise Young View Post
    Clayton, I presented that information for the first time last week at a workshop for the ChinaSCINet group. We are in the process of writing up the results and also planning a further clinical trial to confirm. It did not reduce neuropathic pain in everybody. We will try to do the trial as quickly as possible, to confirm the results.

    Wise.
    "Wheelie Wanna Walk!"

    Comment


      #17
      Dr. Young, thanks so much for the reply!

      On the other hand, I believe that locomotor training is something that your daughters should do. Because she is light, it should be relatively easy for her to do weight-supported walking (in a rolling walker) and being held by an adult. I would have her doing this at least an hour or more a day.
      I can't imagine 1 hour doing locomotor training each day. We don't have access to a lite gait. At therapy she does walk in her AFO and KAFO with a walker three times a week. All three sessions probably don't equal an hour. She also stands in a stander about thee times a week. We try an hour each time. She does more crawling than anything else. I'm hoping that counts some for locomotor training.

      One way that you can help is to get your friends in the spinal cord injury community to work together and start funding clinical trials. I know many people who have spent many thousands of dollars on unproven therapies in overseas clinics that have no interest or ability to show that the therapy is effective.
      I'm sure it is frustrating seeing those with SCI spend thousands on procedures that aren't proven. If I had money I wouldn't know the best use. I don't know if it would be a waste of money to give thousands to clinical trials that might not benefit my daughter. If I had money I would probably move to an area where my daughter could do intensive physical therapy as I feel confident that would help her now. The money I do have goes to medical bills and some therapy out of town.

      My heart goes out to those in China and elsewhere that don't have access and the care the deserve.

      I truly believe the methylprednisolone my daughter received is why she has the return she currenly has and wouldn't have received it if it wasn't for you. I just want to say that the work you do is very much appreciated! Thank you!

      Comment


        #18
        Originally posted by gcblarsen View Post
        Hanns Keirstead with high purity stem cells was successful in making rats walk. Looks like this is going to clinical trials next year in humans. Sounds very promising?
        Unfortunately, H. Keirstead does NOT plan to begin any clinical trials on chronic spinal cord injuries in 2010. They are still in the pre-clinical phase and don't have a timeline of when the data will be complete and submitted to the FDA. As you may know, the clinical trials can't begin until the full IND package is submitted and approved by the FDA.

        You’re going to need lots of patience since there is another trial which they're going to give themselves entirely to - type 1 infantile spinal muscular atrophy. However, two years would "probably" be a reasonable time. Please, not putting you down, just do your homework first. It is taking longer than I thought. I am sorry.
        2016

        Comment


          #19
          Originally posted by Wise Young View Post
          On May 1, 2009, the Mininistry of Health of China issued new regulations that would take place in November 2009. These new regulations require all hospitals that provide cell transplantation treatments to be accredited and all cell transplant procedures to be approved. We were in the process of getting a clinical trial approved at the Kunming Army General Hospital and had all but obtained permission and a grant to do so when this ruling came out that we were told that we need approval from the Ministry of Health.

          We have now met senior officials of the Ministry of Health. One department head told us that our trial was not the responsibiity of his department and referred us to another. That department in turn said that it wasn't their responsibility and referred us to the sFDA (the state Food and Drug Administration). We wrote to the sFDA and just received a reply saying that this was the jurisdiction of the Ministry of Health. In short, nobody is making any decisions or taking responsibility for approving clinical trials involving cell transplants. I suspect that it may be many months before this bureaucratic issue is resolved. We have been trying to get permission to do the trial since last year.
          Dear Dr. Young,

          Sorry to bother you, but I wonder if there is any other obstacle than getting approval from Ministry of Health? If you get the approval, will further clinical trials carry out immediately?

          And, has Umbilical Cord Blood Mononuclear Cell been tested in previous trials? How about the result?

          Thank you in advance.
          It's a shame of human beings that SCI cannot be cured.

          Comment


            #20
            Originally posted by suguo View Post
            Dear Dr. Young,

            Sorry to bother you, but I wonder if there is any other obstacle than getting approval from Ministry of Health? If you get the approval, will further clinical trials carry out immediately?

            And, has Umbilical Cord Blood Mononuclear Cell been tested in previous trials? How about the result?

            Thank you in advance.
            suguo,

            Umbilical cord blood treatments are being used by several groups to treat spinal cord ijnjury, including Beike Biotechnology. However, I don't think that any of the other groups are transplanting the cells into the spinal cord.

            Until the cell regulatory situation in the Ministry of Health in Beijing settles down, we are planning to carry out the phase 2 trial in Hong Kong, at the Chinese University of Hong Kong and the Univeristy of Hong Kong.

            Wise.

            Comment


              #21
              Dr. Young

              You said to not sit around and wait. What can I do or what should I be doing to try to regain function?

              I was sent home 5 weeks after my accident. 2 weeks in the hospital and 3 in rehab. Nothing as far as rehab since then besides the little workouts I do for the last 2 years. A friend gave me a standing frame but its not the best. lol.

              Should I find a rehab facility and find out what that can possible give me? If so do you know a good facility in Oklahoma near Oklahoma City?

              I just don't know the direction to start moving in yet. lol.

              Thanks in advance and for the work you are doing!

              Comment


                #22
                Originally posted by soonerborn View Post
                Dr. Young

                You said to not sit around and wait. What can I do or what should I be doing to try to regain function?

                I was sent home 5 weeks after my accident. 2 weeks in the hospital and 3 in rehab. Nothing as far as rehab since then besides the little workouts I do for the last 2 years. A friend gave me a standing frame but its not the best. lol.

                Should I find a rehab facility and find out what that can possible give me? If so do you know a good facility in Oklahoma near Oklahoma City?

                I just don't know the direction to start moving in yet. lol.

                Thanks in advance and for the work you are doing!
                What would I do, if I were spinal-injured?

                First, I would get into a routine where I am standing at least an hour a day, six days a week. This can be in a standing frame, in a Glider 6000, or even in a swimming pool. If I can step, I would be using this hour to walk as well. Why? I believe that upright posture trains your cardiovascular system and bones to support your weight and the upright stance. If you don't use those functions, they will be lost. The upright posture will also improve your bladder function and stimulate bowel movement.

                Second, I would find a situation where I can do intensive walking training for 6 hours a day, 6 days a week, and for 6 weeks a year. I call this 666 training. The training should involve overground walking, swimming, and other means of increasing your cardiovascular tolerance and endurance. Of course, some people cannot stand or walk (due to contractures, hip dislocation, or flaccidity of lower limb muscles), substitute exercise should be devised.

                Third, I would get the best education that I can. There is strong evidence that quality of life after spinal cord injury correlates with education level, i.e. the higher the education level of the person, the better the quality of life after spinal cord injury. I joke with people that the about half of the brain is devoted to controlling and sensing the body below the neck. It is important to that part of the brain to good use.

                Fourth, I would earn as much money as I can. No matter what happens, being wealthy increases your choices and will increase your access to therapies.

                Wise.

                Comment


                  #23
                  Wise, would you do that training if you were a "complete" injury 1 year post with no returns? I'm all about staying in shape but I was told the standing frame recent studies showed no improvement in bone density scans. Basically, the bones were the same reguardless of standing or not. I'm sure it improves posture, but to what degree? I did some lokomat training but had to pay out of pocket bc I'm labeled a complete injury. I have access to this equipment but am unsure if I'm doing my body any good by doing these things.. Thanks for your opinion.
                  Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
                  CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

                  Comment


                    #24
                    Originally posted by Donnie View Post
                    Wise, would you do that training if you were a "complete" injury 1 year post with no returns? I'm all about staying in shape but I was told the standing frame recent studies showed no improvement in bone density scans. Basically, the bones were the same reguardless of standing or not. I'm sure it improves posture, but to what degree? I did some lokomat training but had to pay out of pocket bc I'm labeled a complete injury. I have access to this equipment but am unsure if I'm doing my body any good by doing these things.. Thanks for your opinion.
                    It is true that several studies have suggested that standing an hour a day 3 days a week does not change the bone density over periods of 3 months. In my opinion, none of these studies followed the patients long enough and the patients did not stand enough. They also did not follow some of the other possible beneficial effects of standing.

                    By the way, the standing an hour a day is not about staying in shape or even just about bone density. It is more about getting your body use to standing, toning up your cardiovascular system so that your sympathetic nervous system boosts vasoconstriction and increase heart rate to maintain your blood pressure when you stand. It takes the weight off your butt and puts it on your feet.

                    Of course, it would be far better if you were doing more than standing. If you can take steps, move your legs, get your heart rate up and going... that would be better. By the way, our minimum requirement for people to join our clinical trials (SCINetUSA), which will measure walking outcome, is ability to to stand an hour a day. Why did we choose this requirement? If people cannot stand at least an hour a day, they have no business trying to join a clinical trial that will evaluate locomotor recovery as an outcome. Rather than waste time after treatment training people to stand after the therapy, this should be done beforehand.

                    Wise.

                    Comment


                      #25
                      Wise. I have a weird situation standing... When I was injured in 2002,I did some rehab in the hospital and could stand in a standing frame fine for like two hours, then we came home to tampa and could also stand fine at the physical therapy. Then we got one for home and the first time I got in it, I was fine. Then I went to step it up rehab and got really light headed. Came home and tried it again, got really light headed. Did it again like a week later and was fine again... I guess the jist of the question is.... Whats with the Fluctuations? Is that normal? Just a fluke I hope
                      "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


                        #26
                        Originally posted by lunasicc42 View Post
                        Wise. I have a weird situation standing... When I was injured in 2002,I did some rehab in the hospital and could stand in a standing frame fine for like two hours, then we came home to tampa and could also stand fine at the physical therapy. Then we got one for home and the first time I got in it, I was fine. Then I went to step it up rehab and got really light headed. Came home and tried it again, got really light headed. Did it again like a week later and was fine again... I guess the jist of the question is.... Whats with the Fluctuations? Is that normal? Just a fluke I hope
                        Not sure. You need to be doing it regularly. If I sat and laid down for a couple of days (even without spinal cord injury) and I then got up, I would become lightheaded. Wise.

                        Comment


                          #27
                          Originally posted by Wise Young View Post
                          What would I do, if I were spinal-injured?

                          First, I would get into a routine where I am standing at least an hour a day, six days a week. This can be in a standing frame, in a Glider 6000, or even in a swimming pool. If I can step, I would be using this hour to walk as well. Why? I believe that upright posture trains your cardiovascular system and bones to support your weight and the upright stance. If you don't use those functions, they will be lost. The upright posture will also improve your bladder function and stimulate bowel movement.

                          Second, I would find a situation where I can do intensive walking training for 6 hours a day, 6 days a week, and for 6 weeks a year. I call this 666 training. The training should involve overground walking, swimming, and other means of increasing your cardiovascular tolerance and endurance. Of course, some people cannot stand or walk (due to contractures, hip dislocation, or flaccidity of lower limb muscles), substitute exercise should be devised.

                          Third, I would get the best education that I can. There is strong evidence that quality of life after spinal cord injury correlates with education level, i.e. the higher the education level of the person, the better the quality of life after spinal cord injury. I joke with people that the about half of the brain is devoted to controlling and sensing the body below the neck. It is important to that part of the brain to good use.

                          Fourth, I would earn as much money as I can. No matter what happens, being wealthy increases your choices and will increase your access to therapies.

                          Wise.
                          Wise, what is your opinion on FES bicycle use -1 hour sessions 3 times a week? I am C6 ASIA A, stand for 1 hour daily, do upper body resistance machines 3 times weekly, alternate daily FES on the Gastrocs and Anterior Tibials, daily Abdominal/Paraspinal FES, and have been using the FES bicycle for 10.5 years (2 times weekly for the first 6.5 years).

                          Comment


                            #28
                            FES bicycle and e-stim;

                            thanks for the answers wise.

                            what if an SCI stands with a walker - is in an upright position. then i believe it is the quads or the pelvic muscle, up and down inches a time (like thrusting) - hands stay firm on the walker so it is clearly muscles in the legs moving.

                            what are your recommendations with FES, e-stim, and standing with the walker like aforementioned, thrusting

                            Comment


                              #29
                              Originally posted by VJS View Post
                              Wise, what is your opinion on FES bicycle use -1 hour sessions 3 times a week? I am C6 ASIA A, stand for 1 hour daily, do upper body resistance machines 3 times weekly, alternate daily FES on the Gastrocs and Anterior Tibials, daily Abdominal/Paraspinal FES, and have been using the FES bicycle for 10.5 years (2 times weekly for the first 6.5 years).
                              VJS, sounds very sufficient. Wise.

                              Comment


                                #30
                                Originally posted by freedomdan View Post
                                FES bicycle and e-stim;

                                thanks for the answers wise.

                                what if an SCI stands with a walker - is in an upright position. then i believe it is the quads or the pelvic muscle, up and down inches a time (like thrusting) - hands stay firm on the walker so it is clearly muscles in the legs moving.

                                what are your recommendations with FES, e-stim, and standing with the walker like aforementioned, thrusting
                                I don't really know. Wise.

                                Comment

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