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It sure is frusterating with all the good things that seem to have been announced

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  • It sure is frusterating with all the good things that seem to have been announced

    And then nothing seems to become of them. I had hoped maybe Epidural Stimulation might help me, it sounded promising, but seems I never hear anything about it anymore. There have been so many other things too that never panned out. It is such a complex complicated thing for CNS healing sometimes it seems nearly impossible. I have exercised hard all 34 years I've been Paralyzed including FES since the year 2000 yet I've never seen any type of recovery. I've never seen anything with anybody else either personally, just read about things like how much better the four in the epidural trials got but never really seen any evidence it really happened. Very frusterating indeed. It's very easy to destroy Central nerves though SCI but seems impossible to ever get them back again.
    "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

  • #2
    I agree in the last 2 1/2 years I've been hopeful with all the studies including ALS, but it seems like only mice get fixed and money gets dipersed to more studies that are a few years from anything. Its odd to me someone can get funding for years and years with no results.
    I have run my own company for 15 plus years but 2 months of not producing I would be replaced. Power to them I'll keep hoping.

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    • #3
      Originally posted by Curt Leatherbee View Post
      And then nothing seems to become of them.
      All in it's own time... I believe there will be some very important news coming to light within the next couple of months.
      http://spinalcordresearchandadvocacy.wordpress.com/

      Comment


      • #4
        What's frustrating to me is constantly hearing about lab rats recovering from nearly any type of treatment.

        Originally posted by GRAMMY View Post
        All in it's own time... I believe there will be some very important news coming to light within the next couple of months.
        Oh you tease!

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        • #5
          Grammy I hope you are right. I look on this site everyday hoping today is the day.

          Comment


          • #6
            Agreed with Grammy. If they're going to do 40 patients total at 5 per year, they have some more years to get through. As I understand it, they wanted to quantify these b/b/s rumours from the first four patients to see if they did get return. They have to figure out a way to make cash from it too - unfortunately. It is what it is though.

            It'll be a while but I still have hope. Unfortunately Silver's work is still in its infancy, but exciting stuff that I will be watching ... it's going to be long term there. Like a mutual fund, lol.

            The clinical dog trial is still going on and get updates on Facebook every day, though they won't talk results. lol

            Here's a sad anecdote. I subscribe to a Facebook page for 'Wyatt' with TM (transverse myelitis) - same as I have. He's just a little guy and gets good care from Shriners. He's a little guy and is in his chewing stage right now - yesterday he chewed his big toe ... because he can't feel it and it's an object to him. Gave himself quite the wound. Red and swollen. His mother posted pictures and was very upset. Can you imagine?

            I hope Wyatt is receiving treatments to walk by the time he is ten. I really hate for kids to have to go through this shit.
            Last edited by lynnifer; 04-09-2015, 01:41 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

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            • #7
              This is extremely, not even know word for extremely, complicated. Each of our brains are different ad operate differently. What I found does work, working by myself is do NOT try to work at point of body you wish to get moving. Your brain, as well as data from EYES, BETTER BE THE CORRECT INFORMATION as well as at the correct speed so all is coordinated properly. Things worked and learned when we all were in a womb. SO, try to reset yourself back to this type of situation. Close your eyes. With eyes closed, see if you can THINK your way only to make stimulation in area. Forget about moving. Your brain MUST produce the correct information AND if MUST BE sent at the correct time/speed for all things to be coordinated correctly. For example. Let's say you want to move left leg. WHAT MUST BE DONE FOR THIS TO HAPPEN? There probably is a book of things that must be correct for this to happen. Keep your eyes closed. You must be able to have ALL parts of body above this leg. This is from brain all the way to this point. If you CANNOT just think way through this, it will NOT WORK. SO, move the process closer to the brain NOT the leg. It IS SOMETHING IS INCORRECT IN THIS LOCATION. KEEP STEPPING BACKWARD moving closer to brain trying t determine where it is not working correctly. This is very similar to a baby growing up. Yes, there are countless things already working the day we are born. There are also countless we continue to learn. I will say, what sucks about this way is there is no way to determine how many more pieces are missing from this puzzle. I do get very excited as things come together, but at same time also get pissed off no knowing how many more things there are. Only way to do it if keep going, pissed off or not. A machine is not going to replace our brains.

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              • #8
                Originally posted by GRAMMY View Post
                All in it's own time... I believe there will be some very important news coming to light within the next couple of months.
                What would that be?

                Comment


                • #9
                  http://acor.bio/1FrlbN0

                  Here is some actual news. Accorda and the Reeve Foundation celebrating. I'd guess maybe something w/ch'ase in the works since Accoda has the patent. I'm speculating.

                  Hey Curt, I find it incredibly frustrating. The number of false starts and special announcements that have led to nothing is mind-numbing. Remember Brain-gate?

                  Comment


                  • #10
                    You mean Acorda Therapeutics is doing the wine tasting event to help raise money for the resource center? Is that the celebration?

                    I doubt that speculation of Acorda/Ch'ase and Reeve Foundation is accurate at all. Acorda is not working on the development of the chondroitinase enzyme. Bradbury and Muir are working on the development of the human viral vector form with Spinal Research in the UK along with Spinal Research funding the large mammal trials in Iowa on canine (which has nothing to do with Acorda patents in the US). None of that has ever been associated with CDRF either.

                    However, a better guess may be that there is additional information on the Resource Center where the two entities ARE already connected financially since Acorda gave 10k for it's development if I remember correctly.

                    Mar 2014: The Christopher & Dana Reeve Foundation is grateful to Acorda Therapeutics for underwriting the launch of the Acute SCI Online Resource Center, a Reeve Foundation microsite that provides information for the newly injured, their loved ones, and caregivers. This targeted website supplements the breadth of resources available through the Reeve Foundation's Paralysis Resource Center and our team of Information Specialists and volunteer Peer Mentors. Tierney Saccavino, Acorda's Senior Vice President of Corporate Communications, underscores the need for such specialized and targeted information: "From when I first started working at Acorda, I've dreamed of an initiative like this that helps address the unique needs of families facing spinal cord injury for the first time. The Reeve Foundation is the ideal partner for our company, and we've proudly supported Reeve Foundation research and quality of life programs for many years.".
                    Last edited by GRAMMY; 04-11-2015, 08:40 AM.
                    http://spinalcordresearchandadvocacy.wordpress.com/

                    Comment


                    • #11
                      Originally posted by Chaz19 View Post
                      What would that be?
                      I'll post the articles and information when it's made public at the SCI Research blog and make a separate thread at this forum if I can remember to stop by here. It wouldn't be appropriate nor fair to the general public for it to be disclosed in this type of thread on the internet...this is the last place anyone would look for information of that type.
                      Last edited by GRAMMY; 04-11-2015, 08:42 AM.
                      http://spinalcordresearchandadvocacy.wordpress.com/

                      Comment


                      • #12
                        Originally posted by Curt Leatherbee View Post
                        And then nothing seems to become of them. I had hoped maybe Epidural Stimulation might help me, it sounded promising, but seems I never hear anything about it anymore. There have been so many other things too that never panned out. It is such a complex complicated thing for CNS healing sometimes it seems nearly impossible. I have exercised hard all 34 years I've been Paralyzed including FES since the year 2000 yet I've never seen any type of recovery. I've never seen anything with anybody else either personally, just read about things like how much better the four in the epidural trials got but never really seen any evidence it really happened. Very frusterating indeed. It's very easy to destroy Central nerves though SCI but seems impossible to ever get them back again.
                        I'm really looking forward to the Epidural Stimulation treatment. It'll come soon!

                        Comment


                        • #13
                          Originally posted by GRAMMY View Post
                          I'll post the articles and information when it's made public at the SCI Research blog and make a separate thread at this forum if I can remember to stop by here. It wouldn't be appropriate nor fair to the general public for it to be disclosed in this type of thread on the internet...this is the last place anyone would look for information of that type.
                          Grammy, does it have something to do with the epidural stimulator, or something new?

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                          • #14
                            I said I'm speculating.

                            I don't have special connections. So I can guess. According the Acorda's website, they have the enzyme listed in their research section. http://www.acorda.com/products/resea...chondroitinase

                            So what is your motive for saying you have special info?

                            Comment


                            • #15
                              Originally posted by Chaz19 View Post
                              I don't have special connections. So I can guess. According the Acorda's website, they have the enzyme listed in their research section.
                              Acorda has actually had their pre-clinical research on Chondroitinase listed on the internet for sale to other pharmaceutical companies for years. I ran onto the listing and saw it for myself. I thought it had been discussed here long ago. The Spinal Research group will be the ones to bring the research forward (if it makes it through all the necessary steps)...

                              I have no "ulterior motives" for saying that some important information may be coming within a couple months. It's too early for anyone to become overly disheartened according to the chatter I'm hearing... If you think it's time to throw in the towel, so be it. I'm aware of an enormous amount of special info but also am not allowed to make public announcements on everything I'm involved in, working on or made aware of. There's no bad mojo intended when I speak out, but if you feel otherwise, feel free to ignore the input.
                              Last edited by GRAMMY; 04-11-2015, 10:00 PM.
                              http://spinalcordresearchandadvocacy.wordpress.com/

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