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When will Epidural Stimulation ever be brought to the masses?

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    #16
    I have sent him a link to register and warned him he would be barraged with questions including personal ones about bowel, bladder and sexual function. I'm waiting to hear back from him as to when he can do this.

    I'll try to find the other three for a similar chat.

    For anyone not familiar, this is Mr Shillcox's story ...

    http://www.reevebigidea.org/dustin-story
    Last edited by lynnifer; 13 Feb 2016, 4:58 PM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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      #17
      Originally posted by josieand1 View Post
      Not true...Your adorable dog would miss you!
      Yes she would! She constantly goes to the door, according to my dog-sitter, looking for me. It's a constant lick-face-fest when we are re-united. Mornings and evenings in bed I have to pry her from me as well.

      Everytime we go out though, someone wants to take her home. I live to serve my dog and my quest is to find her continual new treats to try that don't contain gluten or wheat flour or anything from China. lol
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        #18
        From what I have heard the "best" results came from the ASIA Bs.
        Originally posted by lynnifer View Post
        I have sent him a link to register and warned him he would be barraged with questions including personal ones about bowel, bladder and sexual function. I'm waiting to hear back from him as to when he can do this.

        I'll try to find the other three for a similar chat.

        For anyone not familiar, this is Mr Shillcox's story ...

        http://www.reevebigidea.org/dustin-story

        Comment


          #19
          Originally posted by Curt Leatherbee View Post
          Jen you need to find something to live for, some kind of interest, a passion. Mine became sports and I really miss it for now, I had bladder surgery about 5 weeks ago and am still having some complications so sports for now is out of the question, but we as humans are great at adaptability, like how people even very severely disabled can adapt. Reason I started this post is I just hate the way things are handled with the whole SCI research thing. Something so simple as the Epi-Stim device should be brought to the masses of Spinal Cord Injured people as soon as possible, not test and test and more test. Even if the more fancy unit is not available with the mulit zillion channels, just bring what worked for those 4 guys in the trials to the masses. We all want better lives and some of us have been waiting a long time.
          Hey Curt – I've been wondering the same thing. Maybe we're not hearing the whole story…

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            #20
            Originally posted by Chaz19 View Post
            Hey Curt – I've been wondering the same thing. Maybe we're not hearing the whole story…
            I know Chaz, that's why I wonder if the real story is that it was hyped up for the media reports with the goal of raising as much funding as possible, I'm no dummy. Seen this before. What really bother me is they dangle this in front of all of us who are suffering when in the real world what's paralyzed stays paralyzed.
            "Life is about how you
            respond to not only the
            challenges you're dealt but
            the challenges you seek...If
            you have no goals, no
            mountains to climb, your
            soul dies".~Liz Fordred

            Comment


              #21
              Hi, I've had the epidural trial implant, it worked for me very well. After having to trade it back in I was a mess, after 12 years and a so called walk, I was only good for 200 feet at best. With the trial I went all out and walked a mile and a half all uphill the first day, I finally got my freedom back. I walked a mile in the morning and another in the afternoon, occasionally running aground in a Jack in the Box or taco stand for something to drink! 12 years broken, and 56 years old it was quite the thing, but coming home I thought I could still maneuver my now limber legs, I crashed on the granite counter top twice and hit the ceramic tile floor a few more times.

              From Christmas through after New Years I went through a gallon and a half of Clorox2 cleaning up blood. And then there was the dental re-alignment.......

              Now back on the west coast I am waiting for the UTI to clear up and go ahead with the permenent one. Knowing now that one of my falls may be the last, the whole time I had the trial I did more, stepped better, and was more confidant, all while never having a fall. Cept for the day I accidentally turned off the unit on my way to give it back, face first in the parking lot! Yes it did help a lot.
              Last edited by alhavel; 14 Feb 2016, 4:58 PM.

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                #22
                Wow! you all have a right to riot.
                I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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                  #23
                  Originally posted by Curt Leatherbee View Post
                  I know Chaz, that's why I wonder if the real story is that it was hyped up for the media reports with the goal of raising as much funding as possible, I'm no dummy. Seen this before. What really bother me is they dangle this in front of all of us who are suffering when in the real world what's paralyzed stays paralyzed.
                  It is sick. They boasted so much that the average person who knows something about a spinal cord injury and asks me about it thinks that I could have a chance in the next 2 to 3 years. Sadly, I know if The science is solid ? I'm looking at 5 to 7 at best.

                  Meanwhile, other technologies like robotic arms and brain implants dominate the news and I've had people say to me why don't you get your legs amputated and get some robotic prosthetics. I don't know if the world gone crazy or if the narratives just not being controlled by anyone with spinal cord injury who considers biological based treatments.

                  Strange times, man.
                  Last edited by Chaz19; 14 Feb 2016, 7:41 PM. Reason: Gramma

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                    #24
                    Originally posted by alhavel View Post
                    Hi, I've had the epidural trial implant, it worked for me very well. After having to trade it back in I was a mess, after 12 years and a so called walk, I was only good for 200 feet at best. With the trial I went all out and walked a mile and a half all uphill the first day, I finally got my freedom back. I walked a mile in the morning and another in the afternoon, occasionally running aground in a Jack in the Box or taco stand for something to drink! 12 years broken, and 56 years old it was quite the thing, but coming home I thought I could still maneuver my now limber legs, I crashed on the granite counter top twice and hit the ceramic tile floor a few more times.

                    From Christmas through after New Years I went through a gallon and a half of Clorox2 cleaning up blood. And then there was the dental re-alignment.......

                    Now back on the west coast I am waiting for the UTI to clear up and go ahead with the permenent one. Knowing now that one of my falls may be the last, the whole time I had the trial I did more, stepped better, and was more confidant, all while never having a fall. Cept for the day I accidentally turned off the unit on my way to give it back, face first in the parking lot! Yes it did help a lot.
                    I'm hoping the UTI is cleared and you're a go for Thursday to get the permanent implant now. Let's try to slow down a bit though for some healing time. Those are some nasty spills and injuries! Tell Dr. Brown hello for me and travel safe on your way back home! Thank you for all the updates too!
                    http://spinalcordresearchandadvocacy.wordpress.com/

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                      #25
                      I've communicated with one of them. It appears to me that CR turns them into research money solicitors. I've poked around their financials and get the sense that it is a business working with other institutions. The business is fundraising not curing. There are some collaborations and money being lent to research facilities for unknown reasons. I suspect CR is trying to tie up technology and then create another company for profit.

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                        #26
                        Glad you're getting the permanent one alhavel! Do you still take Ampyra?

                        Glad one of us gets their life back.
                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                        Comment


                          #27
                          Originally posted by Curt Leatherbee View Post
                          Yes I have, Omentum Transportation comes to mind, there was a special FDA approval given for that to try in 50 test subjects at Boston Medical Center Massachusetts. The Vocare device, Special FDA permit for that. Ampyra (also known as 4ap) was approved for MS with a off label for SCI, there was much talk about it years ago on these forums, many people tried it. FES was said to improve SCI, it was approved. The list goes on, I'm sure others can think of more.
                          Well i've never heard of the first thing, sounds like garbage though. As for Ampyra you're just foolish if you think a non-surgical approach will repair your spinal cord injury let alone a solo oral drug, so that's not false hope, that's ridiculous expectations one was meant for MS, two substantial function should not even remotely be expected from that kind of approach. As for FES that is purely for exercise , Which it can greatly improve many health issues in relation to paralysis, and that's why it was approved purely as an exercise device for paralysis. Never, and I mean never should that of been expected to return actual function. None of these are comparable to the autologous neural stem cell clinical trial, ,or the epiduralp stim etc

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                            #28
                            Some reported bladder return in the 4-ap trials.

                            That's mainly why I was dying to try it. I still take it - returned a tiny bit of sensation and lower back muscles giving me stronger transfers and better proprioception of my hips.

                            Remember, it has to be something that can forever be made money on, lol. Just enough to swarm the market, then release something slightly better and then again ...

                            I remember the vocare - I think - for bladder control.

                            Miami Project - har dee har.
                            Last edited by lynnifer; 15 Feb 2016, 8:02 AM.
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                            Comment


                              #29
                              They still have the vocare in Europe I believe, I think it's called the Brindly or something like that.
                              "Life is about how you
                              respond to not only the
                              challenges you're dealt but
                              the challenges you seek...If
                              you have no goals, no
                              mountains to climb, your
                              soul dies".~Liz Fordred

                              Comment


                                #30
                                It's a no from Dr Harkema's camp .. citing publication of trial results. Understandable, but frustrating.

                                I've heard nothing further from Mr Shillcox.
                                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                                Comment

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