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    #76
    Originally posted by paolocipolla View Post
    Ok so you are in the rehab business...

    I think anyone in the rehab business love Wise for coming up with the 6-6-6 thing.
    Lots of money to make and lots of people's wallets to empty .

    Just my personal opinion.

    Paolo
    Wise did not come up with the 6-6-6 program.

    I work for a non-profit, and the money we make from clients does not cover our operating costs. If I was in this for the money, I'd have gone to a different profession a long time ago. Not everybody is in the "Rehab business" to empty people's wallets.
    Last edited by tomsonite; 1 May 2013, 5:00 PM.

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      #77
      Originally posted by NowhereMan View Post
      *This is my opinion, riddled with assumptions, and I may be incorrect.

      I agree it might be good for muscles/bones. However, can a person walk without another person right behind them? Or will it require someone walking behind them every time they walk (highly impractical)? I think people will just hurt themselves if they’re alone. Eventually they would fall and break a hip. That would negate any health benefits. Without ANY sensation below injury it’s almost impossible to walk, even with a cart. You’d have to be hanging on to the cart for your dear life and constantly looking at your feet. A person would be f---ed if for some reason their legs stopped going in the middle of walking and they’re by themselves.
      You seem to be missing my point, NowhereMan. Take this hypothetical situation.

      Suppose you use a wheelchair full time to get around. Then you get the surgery then go through a 6-6-6 program. Suppose you never get past KLS IV. But, in the meantime, through the surgery and all that aggressive therapy, you improve your bone density, you increase your muscle mass, your upper body gets stronger from supporting yourself on that walker so much, and regain some bowel and bladder function, or maybe at least enough sensation to manage it better. When all is said and done, you still go back to using your chair full-time, but it's way easier to get around and you can get through a long day without using so much energy from that stronger upper body. It is easier to balance and do things in your chair from the increased core strength/function. Your B&B program is much easier to manage. Even though you still have to use your chair after all that walking, you still have a higher quality of life.

      Is it worth going through all that to have a higher quality of life from your chair? You seem to think not, and that's fine. There is no "correct" answer to that question. Other people just might think it IS worth it to do all that walking for the quality of life benefits, even if they don't get walking back.

      Comment


        #78
        Originally posted by tomsonite View Post
        You seem to be missing my point, NowhereMan. Take this hypothetical situation.

        Suppose you use a wheelchair full time to get around. Then you get the surgery then go through a 6-6-6 program. Suppose you never get past KLS IV. But, in the meantime, through the surgery and all that aggressive therapy, you improve your bone density, you increase your muscle mass, your upper body gets stronger from supporting yourself on that walker so much, and regain some bowel and bladder function, or maybe at least enough sensation to manage it better. When all is said and done, you still go back to using your chair full-time, but it's way easier to get around and you can get through a long day without using so much energy from that stronger upper body. It is easier to balance and do things in your chair from the increased core strength/function. Your B&B program is much easier to manage. Even though you still have to use your chair after all that walking, you still have a higher quality of life.

        Is it worth going through all that to have a higher quality of life from your chair? You seem to think not, and that's fine. There is no "correct" answer to that question. Other people just might think it IS worth it to do all that walking for the quality of life benefits, even if they don't get walking back.
        I haven't heard anything about return of sensation or control of bladder or bowel function. If your abs are paralyzed, you will not get core strength back. Once you stop the therapy you're just going to atrophy again and all those 6 months of rehab will be for nothing. Unless you continue to do it at home forever. Doing it at home seems very dangerous to me.

        Upper arm strength can be obtained at a gym w/o therapy. Even a fes bike would be able to increase muscle/bone density in legs. 6-6-6 seems like a lot of work/$ for just health benefits that can be attained at a SCI gym. Just my opinion.

        Comment


          #79
          Originally posted by NowhereMan View Post
          With the information/results thus far presented you couldn’t pay me to take the treatment.
          I think its very interesting how divided some of us are. Id be willing to pay the $100k and more to get into the trial alone.

          Comment


            #80
            Originally posted by Barrington314mx View Post
            I think its very interesting how divided some of us are. Id be willing to pay the $100k and more to get into the trial alone.
            Every little bit of return is precious, here's to hoping this is the beginning of something we'll always cherish!
            Thanks, tomsonite and dr. Wise!
            "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

            Comment


              #81
              Originally posted by NowhereMan View Post
              I haven't heard anything about return of sensation or control of bladder or bowel function. If your abs are paralyzed, you will not get core strength back. Once you stop the therapy you're just going to atrophy again and all those 6 months of rehab will be for nothing. Unless you continue to do it at home forever. Doing it at home seems very dangerous to me.

              Upper arm strength can be obtained at a gym w/o therapy. Even a fes bike would be able to increase muscle/bone density in legs. 6-6-6 seems like a lot of work/$ for just health benefits that can be attained at a SCI gym. Just my opinion.

              Just because you haven't heard about return of sensation or B&B doesn't mean it won't happen. Remember nothing has been published yet and when phase III trials commence they will be done on many more people and with more, different experimental groups.

              You're right that a lot of the benefits I mentioned can be attained at an SCI gym, and some could even be attained at a commercial gym or at home. However, nobody works out that much at a gym or at home. The sheer volume of work that's involved in 6-6-6 will make more massive gains possible. You are also right that you'd lose all the benefits you gain if you go immediately from 6-6-6 back to nothing at all. But there is most likely a minimal level of work you could do to maintain what you gained. What amount of work this is, I have no idea. Perhaps it's 4 hours x 4 days/week. Perhaps it's 2 hours x 2 days. Maybe 1.5 hours x 5 days/week? Who knows. Time will tell.

              Comment


                #82
                Originally posted by rjg View Post
                No one is claiming that anyone is claiming it's a cure.
                No one is telling you to queue up for this, don't know why you diss the study. Hopefully it will get some wheels spinning.
                Debating on CareCure is like participating in the special-olympics. You may win, but you're still disabled.

                Comment


                  #83
                  Originally posted by tomsonite View Post
                  Wise did not come up with the 6-6-6 program.

                  I work for a non-profit, and the money we make from clients does not cover our operating costs. If I was in this for the money, I'd have gone to a different profession a long time ago. Not everybody is in the "Rehab business" to empty people's wallets.
                  Good that you are not in that for the money, but rehab remains a business driven field most of the times.

                  Wise came up with the name 666 (which is a very bad name for Christians, just that should have suggested to find a better name), not with the intensive rehab concept.
                  The 666 is a SUPER intensive rehab approach. In my opinion is unrealistic and misleading as it contribute to sell the concept that SCI can be cured with intense rehab, therefore the ones who don't walk are just the lazy ones.

                  How long have you been working in rehab with SCI people if I can ask?

                  Paolo
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #84
                    Originally posted by Wise Young View Post
                    Curt,

                    Why are you assuming that there is no nerve connections? Even in so called "complete" spinal cord injuries, there are likely to be some connections. Also, I did not say that patients have no voluntary activity or sensation, only that the motor and sensory scores are not sufficient to explain the walking.

                    Many people do stand without leg braces, just with their spasticity. You may be thinking of people with flaccid paralysis. In that case, they may flop to the ground. However, most people with spastic paralysis are able to stand, even people with cervical spinal cord injuries.

                    I hope that we are making people more "incomplete" with our therapy and that is why some are walking.

                    Wise.
                    Wise,

                    you have to do something about your memory, seriously.

                    All patients in the study are ASIA A complete and did not change motor and sensory scores. You said that many times.

                    Paolo
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                      #85
                      Originally posted by paolocipolla View Post
                      Good that you are not in that for the money, but rehab remains a business driven field most of the times.

                      Wise came up with the name 666 (which is a very bad name for Christians, just that should have suggested to find a better name), not with the intensive rehab concept.
                      The 666 is a SUPER intensive rehab approach. In my opinion is unrealistic and misleading as it contribute to sell the concept that SCI can be cured with intense rehab, therefore the ones who don't walk are just the lazy ones.

                      How long have you been working in rehab with SCI people if I can ask?

                      Paolo
                      Rehab may be business driven sometimes, but isn't there a business component to everything that people do for a living? I'm about as far away from a capitalist pig-dog that you can get, but I still think people should be able to make a living.

                      I don't think anyone who really knows anything about 666 tries to sell it as a cure for SCI. Maybe this is done by others but not the scientists and therapists who know what's behind it. I don't need to tell you that a cure for SCI involves a hell of a lot more than just walking. Also, any good scientist, therapist, or in my case trainer (as I am not any type of licensed therapist) will tell you that exercise alone will not return functionally relevant, independent walking in the majority of the SCI population. For some people who are very incomplete, a very high volume of exercise (hours a day, multiple days a week) can restore independent ambulation. But these are the exceptions, not the rule. For most people with SCI, high volumes of activity based training will keep their bodies healthy and in good enough shape to be able to handle things like being patients in a clinical trial that involves something like 666. I have seen people get some voluntary function back but as I said, it is usually not enough to gain completely independent ambulation.

                      I have been working as an SCI trainer for a little less than 2 years. One month after I started working at the gym I'm at, I went to working 2 walk in Baltimore in the fall of 2011. That experience alone is what got me so intensely into my work, and one of the things that still resonates with me is you sticking it to certain researchers as to why more is not being done for chronic SCIs.

                      Comment


                        #86
                        Originally posted by rjg View Post
                        No one is claiming that anyone is claiming it's a cure.
                        Good disclaimer

                        Comment


                          #87
                          Originally posted by tomsonite View Post
                          Rehab may be business driven sometimes, but isn't there a business component to everything that people do for a living? I'm about as far away from a capitalist pig-dog that you can get, but I still think people should be able to make a living.

                          I don't think anyone who really knows anything about 666 tries to sell it as a cure for SCI. Maybe this is done by others but not the scientists and therapists who know what's behind it. I don't need to tell you that a cure for SCI involves a hell of a lot more than just walking. Also, any good scientist, therapist, or in my case trainer (as I am not any type of licensed therapist) will tell you that exercise alone will not return functionally relevant, independent walking in the majority of the SCI population. For some people who are very incomplete, a very high volume of exercise (hours a day, multiple days a week) can restore independent ambulation. But these are the exceptions, not the rule. For most people with SCI, high volumes of activity based training will keep their bodies healthy and in good enough shape to be able to handle things like being patients in a clinical trial that involves something like 666. I have seen people get some voluntary function back but as I said, it is usually not enough to gain completely independent ambulation.

                          I have been working as an SCI trainer for a little less than 2 years. One month after I started working at the gym I'm at, I went to working 2 walk in Baltimore in the fall of 2011. That experience alone is what got me so intensely into my work, and one of the things that still resonates with me is you sticking it to certain researchers as to why more is not being done for chronic SCIs.



                          Paolo
                          In God we trust; all others bring data. - Edwards Deming

                          Comment


                            #88
                            Originally posted by paolocipolla View Post
                            That's it, it's well known and in some cases (one I know of) people can get worse.
                            Sometimes nothing change.
                            Sometimes they get better.

                            Dr. Reis does not talk about the cases that got worse.

                            Paolo
                            I've done it, almost nothing changed.... but I have seen for most of them (75% i guess) is positive, for one more than the others, each case is different.......even so, I do not regret that I did it, I would do it again
                            Last edited by Johnnie Walked; 2 May 2013, 4:13 PM.
                            keep (rolling) Walking

                            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

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                              #89
                              Originally posted by Johnnie Walked View Post
                              I've done it, almost nothing changed.... but I have seen for most of them (75% i guess) is positive, for one more than the others, each case is different.......even so, I do not regret that I did it, I would do it again
                              Thanks for telling us.
                              I think depending on how your spinal cord looks like, what you have to loose, your level of injury, etc. it can make sense to go for it given the fact that there is no effective therapy for chronic SCI... yet.

                              Given the existence of this publisched study I don't understand why Wise is planning to do an arm of the trial with just this procedure once again.

                              Paolo
                              In God we trust; all others bring data. - Edwards Deming

                              Comment

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