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    #31
    Originally posted by niallel View Post
    I bet everyone has these feelings from time to time, I know I do. But maybe they are best kept for your bedroom/family/friends rather than in a forum where everyone else is in the same situation and comes with hope.
    No one should be censoring their feelings, they are real.


    Originally posted by niallel View Post
    Thanks Jim, all sounds great. Your thoughts on the arm doing the walking training alone before the cells is very interesting.

    Is the protocol that was approved for the walking training available anywhere? I'd love to know if rehab centers near me would be able to do it before. Seems like a better use of time doing this than normal rehab, working towards a goal always pushes me on.
    The protocol isn't public yet. There are plans to train all places that are interested, including VA facilities in the US.


    Originally posted by Schmeky View Post
    No timelines on Phase II and III. I can only guess, but probably 3 - 5 years for Phase II, then another 3 - 5 for Phase III. So probably 6 - 10 years before this could be considered "available" as an approved treatment.

    Many cannot afford this, so unless some form of funding surfaces, this will be limited to those with cash funds. Lodging, transportation, the everyday expenses of SCI, plus this therapy could easily be $100,000.00+ a year.
    The Phase II will take about a year to complete (6 months per patient, 1 surgery per facility, every 2 weeks.)


    Originally posted by #LHB# View Post
    Aaaaaaahh... to be a community walker again!

    Jim,
    Will all SCI’s be able to get compassionate use or will it just be complete Asia A’s?
    Will be up to the FDA.

    Comment


      #32
      Originally posted by Jim View Post
      No one should be censoring their feelings, they are real.




      The protocol isn't public yet. There are plans to train all places that are interested, including VA facilities in the US.




      The Phase II will take about a year to complete (6 months per patient, 1 surgery per facility, every 2 weeks.)




      Will be up to the FDA.
      Training Rehabilitation facilities and VAs with that exercise curriculum showing positive results will be a giant step in the right direction.

      In my opinion, especially VAs. Who at least around here in New York seem to be much more active in bringing people in for research.

      Comment


        #33
        Originally posted by Jim View Post
        No one should be censoring their feelings, they are real.
        Maybe you need to create another forum for people who believe there will never be a cure :-)


        Originally posted by Jim View Post
        The protocol isn't public yet. There are plans to train all places that are interested, including VA facilities in the US.
        Thanks Jim, it would be good if it was published - not everyone is in the US.

        Comment


          #34
          What's a realistic projected time line for availability of the complete therapy program?

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            #35
            One question---with the 6/6/6 therapy program, how do the therapists handle quads who have no trunk control? Do they use some sort of aluminum back brace like the ones used when someone breaks their back? Even the standing frames support the trunk while standing. Any info on this issue would be helpful.

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              #36
              Dynamic core stability, including regulation of intra-abdominal-pressure, is essential for purposeful movement. I would hope that would be an early training goal, in order to minimize compensation.

              It will be interesting to see if the physical therapy prescription allows for some personalization, or if it must necessarily be kept more generalized.
              Know Thyself

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                #37
                Hi Jim,
                i don’t know if it has already been discussed here , but di you know if patients from the Chinascinet could stand up alone from bed or weelchair ?
                Do you if foreign people can apply when compassionate use will be available?
                Thanks by advance

                Comment


                  #38
                  Originally posted by natyb View Post
                  hi jim,
                  i don’t know if it has already been discussed here , but di you know if patients from the chinascinet could stand up alone from bed or weelchair ?
                  Do you if foreign people can apply when compassionate use will be available?
                  Thanks by advance
                  this is just more lies and bullshit.
                  Wish I didn't know now what I didn't know then.
                  Bob Seger

                  Comment


                    #39
                    What are lies and bullshit tvot?

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                      #40
                      Agreed, Jim. Some people are so ignorant that they do not know the difference between a question and a statement. A question is a request for information. A statement is providing information.

                      Comment


                        #41
                        Originally posted by Jim View Post
                        After the surgery and three days in hospital, patient will go home and recover for 2 weeks. Stitches will be removed and they will be cleared for therapy. Therapy begins at week 3, for six weeks at an outpatient rehab center. The goal of the next two weeks is to build up to standing in a standing frame for 5 hours a day. (Outpatient therapy will be 5 hours a day for 5 weeks. It's just not possible for rehab centers to do 6 hours a day, 6 days a week.) After 2 weeks of standing, the goal at the end of the next 4 weeks, is stepping, using an upper-body supporting rolling walker.

                        After the 6 weeks of outpatient, patient will then attend Push To WalkNJ/Project WalkNJ/ or one of the other places for 4 months. The goal is to eventually work up to walking 5 days a week, 5 hours a day. That's why the walking program is 6 months. It takes a long time to get there.





                        After the patients in the trial are operated on, the therapy will be available for compassionate use.
                        Where do I sign up ??

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                          #42
                          When recruitment starts, details will be posted here.

                          Comment


                            #43
                            Originally posted by Jim View Post
                            When recruitment starts, details will be posted here.
                            Not on here much. Seems I signed up for an email deal before about these things ? Maybe, maybe not..

                            Comment


                              #44
                              Until I'll just keep building muscles that I can use and go in my stand up frame to keep my legs that I have "so far" hopefully be I'll be a good be canadite

                              Comment


                                #45
                                The last eBulletin I sent out was on the 10th. You haven't opened on since 2018, might be going to your spam. They come from sciproject.

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