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    #16
    Originally posted by niallel View Post
    Wouldn't that mean expecting the stem cells to do everything?
    It means that in an experimental setting where walking independently is the desired outcome, the need for assistive personnel and devices (and their costs) would be front loaded. And then, if successful, lessen over time.
    Know Thyself

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      #17
      Originally posted by Mitchitsu View Post
      Why would someone need compassionate use for therapy?
      If you have the resources to pay project walk $3,000/week I'm sure they would be more than happy to take your money for 5 hours a day of training right now.
      The stem cells.

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        #18
        Originally posted by Rick1 View Post
        It means that in an experimental setting where walking independently is the desired outcome, the need for assistive personnel and devices (and their costs) would be front loaded. And then, if successful, lessen over time.
        Isn't that was is proposed? After all the rehab people will have the ability to walk on their own to keep it up.

        Or have I missed something and you'll need constant rehab forever? If thats the case then the rehab with people would be a non-starter, and then maybe something like keeogo and a walker would be something you could do yourself for the rehab.

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          #19
          Originally posted by niallel View Post
          The stem cells.
          Yes, thank you. We are specifically referring to therapy.

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            #20
            Originally posted by Mitchitsu View Post
            Yes, thank you. We are specifically referring to therapy.
            I think Jim was referring to the stem cells for compassionate use. Obviously you are correct rehab alone doesn't need compassionate use.

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              #21
              Originally posted by Mitchitsu View Post
              Well in theory if you are part of the trial, the therapy you should come along with it.

              And if you are not part of the trial, at the rate things seem to be progressing, it won't be available for the next 20 or more years anyway

              Sorry not usually so pessimistic. I've only been hurt 3 years and I was fortunate to get decent return. I could not imagine the frustration of people with injuries 15 or 20 years ago constantly hoping something would be available in the next '5 years'...
              How about you leave that 'pessimistic' to people who been injured 10+ years. You should be encouraging us! I've been in this wheelchair for 14 years and not once have I ever given up hope. In fact HOPE is what keeps me going everyday.

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                #22
                Originally posted by Sparky831 View Post
                How about you leave that 'pessimistic' to people who been injured 10+ years. You should be encouraging us! I've been in this wheelchair for 14 years and not once have I ever given up hope. In fact HOPE is what keeps me going everyday.
                Understood. However I don't think there are any rules and time frames for pessimism and feelings.

                I think at 3 years Ive earned the right to feel whatever way I do about the situation.

                That said, I absolutely understand where you are coming from. I might be pessimistic about this specific study but my life is complete on hold with mostly hope and I do think the SCI research has come an incredibly long way

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                  #23
                  Originally posted by Mize View Post
                  I'm ASIA A, T3 Complete and "walk" with one therapist and a walker. Just need the right therapist. I've had to curtail my PT owing to work, but I still do an hour a week and I still make gains. How much are recovery vs. using what I've got better is an unknown, but I can usually advance my legs now (hip flexors) and my stance phase sometimes doesn't require a knee block. Would be interesting to try the super intense thing, but hard to keep a job.
                  I too don't understand this, but in the paper Dr Wise refers to complete injuries doing this intensive training as well.

                  I was under the impression complete meant complete. Like the moment you have a little voluntary twitch below your level of injury isn't it by definition incomplete?

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                    #24
                    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.
                    Thanks Jim
                    Know Thyself

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                      #25
                      Originally posted by niallel View Post
                      Is there a waiting list started for this? I imagine there will be a big queue of people wanting to do it.

                      Maybe you should start taking deposits, I'd sign up.
                      When everything is finalized and recruitment begins, I will post here. You will apply directly to one center. The surgeons/principal investigators will then decide who will be screened, and chosen to participate. You need to live in NY/NJ for six months, and return at one and two years for follow-up exams.

                      Originally posted by niallel View Post
                      Isn't that was is proposed? After all the rehab people will have the ability to walk on their own to keep it up.

                      Or have I missed something and you'll need constant rehab forever? If thats the case then the rehab with people would be a non-starter, and then maybe something like keeogo and a walker would be something you could do yourself for the rehab.
                      I'm told that after the 6 months of intensive training, one hr per day is necessary to maintain what has been gained. Some are now 'community walkers' and walk all day.

                      Keep in mind, there are 3 treatment groups. Nine- walking training only. Nine- UCB cell injections + walking. Nine- cells + six weeks of oral lithium + walking. The nine that are randomized to the walking only group will be offered what proves to be the most effective treatment after the trial. We think this group will do better than the others because of their 'pre-training'.

                      We will learn a ton.

                      Comment


                        #26
                        Originally posted by Mitchitsu View Post
                        Understood. However I don't think there are any rules and time frames for pessimism and feelings.

                        I think at 3 years Ive earned the right to feel whatever way I do about the situation.
                        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.

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                          #27
                          Originally posted by Jim View Post
                          When everything is finalized and recruitment begins, I will post here. You will apply directly to one center. The surgeons/principal investigators will then decide who will be screened, and chosen to participate. You need to live in NY/NJ for six months, and return at one and two years for follow-up exams.

                          I'm told that after the 6 months of intensive training, one hr per day is necessary to maintain what has been gained. Some are now 'community walkers' and walk all day.

                          Keep in mind, there are 3 treatment groups. Nine- walking training only. Nine- UCB cell injections + walking. Nine- cells + six weeks of oral lithium + walking. The nine that are randomized to the walking only group will be offered what proves to be the most effective treatment after the trial. We think this group will do better than the others because of their 'pre-training'.

                          We will learn a ton.
                          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 centres 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.

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                            #28
                            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.
                            We must be reading two different forums. Because what I wrote is significantly more positive than many here. Anyway, good luck with everything.

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                              #29
                              No time lines 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.

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                                #30
                                Originally posted by Jim View Post
                                When everything is finalized and recruitment begins, I will post here. You will apply directly to one center. The surgeons/principal investigators will then decide who will be screened, and chosen to participate. You need to live in NY/NJ for six months, and return at one and two years for follow-up exams.



                                I'm told that after the 6 months of intensive training, one hr per day is necessary to maintain what has been gained. Some are now 'community walkers' and walk all day.

                                Keep in mind, there are 3 treatment groups. Nine- walking training only. Nine- UCB cell injections + walking. Nine- cells + six weeks of oral lithium + walking. The nine that are randomized to the walking only group will be offered what proves to be the most effective treatment after the trial. We think this group will do better than the others because of their 'pre-training'.

                                We will learn a ton.
                                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?
                                Last edited by #LHB#; 8 Sep 2019, 6:51 PM.

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