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Virtual Open House this Friday

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  • Virtual Open House this Friday


  • #2
    Very cool. I look forward to joining my first open house!
    C5/6 complete (maybe) circa June 2018


    • #3
      Open House tonight, 7:30pm Eastern


      • #4
        Thanks Jim, this was a really informative session!
        C5/6 complete (maybe) circa June 2018


        • #5
          Originally posted by ejl10 View Post
          Thanks Jim, this was a really informative session!
          Glad you made it!


          • #6
            GREAT JOB GUYS
            I MISSED THESE
            it has been 16 yrs


            • #7
              Even sans beard it was great seeing Wise!
              I had a bit struggle learning how to get simple zoom to work, but I’m an old turd so i get a pass.
              I caught the last half at least, enough to learn that I am not eligible to be in the lucky 27. I wish them all the best luck in the world with the coming clinical trial.
              Jim thanks for your effort !!!!


              • #8
                So I was off by a week. Does it happen to be online anywhere? Or can anyone give a recap?


                • #9
                  I had to leave at 6PM for another Zoom event, but I thought it was excellent, and so good to see Wise without a beard! My understanding is that the PowerPoint was going to be available, but not sure where or how.

                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                  • #10
                    I was there asking questions and soaking it all in! I've also submitted my name for the upcoming trial (fingers crossed), i qualify as best i can tell.

                    We did finally see some video of 2 patients walking but i'd still like to see some more. Apparently a number of the patients in the trial have recovered the abiliy to walk unassisted for long distances. During the open house they showed 2 patients walking but both seemed to be using a type of walker? Don't get me wrong...i am not complaining...i would do ALMOST ANYTHING to be able to walk/shuffle along with a walker especially if it included bowel/bladder recovery! But it would be nice to see/hear testimonials from the subjects that recovered the most?

                    And some of the more exciting side affects of the walking (i think you would call it involuntary walking?) is (like i mentioned) many of the patients had improvements in bowel and bladder function!

                    The bad news is of course the trial in the US has been post poned due to Covid 19 but i think that is expected/a good idea for the safety of all involved.

                    It was also puzzling that no information has yet been released about a 2nd trial that had already occured?

                    Nevertheless, exciting possibilities.

                    I personally learned new information:

                    1. Using a robot walker is not ideal since it forces/peforms the walking for the patient which does not trigger the recovery. (For the same reason i don't think FES is used/recommended either?)
                    2. Unfortunately they have not yet found a way to stimulate similar recovery in the upper limbs.
                    3. The walking did not seem to recover much of the atrophied leg muscles. Dr. Wise explained they belive this is because walking alone does not require a lot of strength?
                    4. I was surprised only 100 folks joined the webinar. I hope at some point these trials/recovery will get a LOT more attention.


                    Last edited by crispy1981; 05-04-2020, 11:31 AM.


                    • #11
                      JIm, any thoughts on when we'll get a response from our questions during the open house? It's been 2 weeks now since submitting questions to the supplied email address.

                      thanks, dan


                      • #12
                        Dan, please resend the email


                        • #13
                          I resent and copied you Jim. thanks!