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  • #31
    And how. This site has come pretty far. What a success story.
    "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer


    • #32
      and the cure news is "if you got a complete spinal cord injury, move on with your life, this injury is permenant!"


      • #33
        bent, you are surely entitled to your view on the possiblity of cure but I believe that this forum gives the opposite message. Wise.


        • #34
          This is democracy at its best. I don't agree with everything here, but I do love the loyalty from the current SCI posters and the sincere dedication from WISE. If there is anything a SCI needs they can at least find help here. Keep up the good work.



          • #35

            I am continually offended by your posts. You write as if there is no hope. Around the first of the year, you wrote that the best thing you had done was accepting the fact that you will never get better. Yet, you continue to come to the Cure forum and discourage everybody with your negativity. If you truly believe you're "screwed," please refrain from discouraging others, especially since you are uninformed. I say this because of your mention of Carl Kao - that seemed to be the first you had heard of the doctor.

            I also believe that you should count your blessings as a low level para, you could be a lot worse.


            • #36

              You inspire me with your energy and your fantastic attitude! Despite a high and complicated injury, you have a hopeful, positive attitude of HOPE, while you are very much pointing forward in your life...Keep Going my friend...lets chat sometime OK?


              ...and she lived happily ever after...


              • #37

                I hear ya! I can be negative to the point of excess. But I am more informed than you could possibly realize.
                - friend and neighbor to Chris Reeve-he's discouraged for lack of government funding
                - I know Nick Bonacanti- Miami Project is severely long term
                - I live a few miles from Acorda therapuetics- I have visited many times casually and on an informal appointment. They are realistic in their goals.
                - I have lobbied directly to Senator Clinton; believe mein NY state government funding os stem cell research is on the bottom of their endless list of to dos.
                - My first cousin is on the board Of Yale University Medical program.- Alexion's affiliation with Yale has stalled in zenotransplantation for SCI; they are trying to organize their MS trials in several years.
                - I get up to date news on SCI research in person from Dr. Kristjan Ragnarrson at Mt. Sinai; he's a realist and his blunt opinion ain't pretty regarding cures.
                - I've got a childhood friend working under Dr. Gearhardt at Johns Hopkins University; they have neither the funds or clinical setting to start SCI trials.
                - Finally I have continually bothered a friend of my parents who is a Congressman down in Florida; after speaking with him he is no friend of mine; He is staunchly conservative and is 100% sure that therapuetic cloning will be banned while Bysh is in office, which is another 5 years at this point.

                -I'm not listing this to show off or any kind of garbage, I'm showing you my informers for the last few years, negative I am, but the facts I've obtained show my negativity to be valid.


                • #38
                  I forgot to mention this- when you find the time, get in touch with Dr. Barth Green at The Miami Project, he'll sure tell you what he thinks of Dr. Kao.
                  Again this is from his mouth, not mine-" Dr. Kao is a fugitive in this country not to be trusted!!


                  • #39
                    This is not the most appropriate place for an argument such as this.

                    First of all, Miami Project is about the last place that I'd listen to. I will never bother wasting my time contacting them.

                    All of your contacts are nice, but you don't mention anybody outside of the U.S. Chronic SCIs are being treated outside the U.S. as we live and breathe this life of SCI. What about Wise? He's been working with SCI for decades, and he believes the cure is coming.

                    At least Kao is operating on humans, and some members here are very happy with the results.

                    You don't have facts that show your negativity to be valid, you have opinions. Don't discourage newcomers by filling the Cure forum with your negativity. As far as the cure goes, I will quote mkowalski99, "Save your money and keep your passport up to date."

                    Like I said before, I read that you had accepted your fate. If that's the case, why do you check the Cure forum?? For the sake of your sanity, you might want to forget about the Miami Project.


                    • #40
                      I know I've said this before but w/o this site I would have gone stark, raving, mad or possibly something much worse. Thanks to Dr. Young, our moderators and all of you who post your thoughts on this forum.

                      "Save the last dance for me!"


                      • #41
                        Well, why didn't you tell me before that mkowalski99 said a cure is coming? If I had known I would have jumped on the redeye to Mexico!?


                        • #42
                          Go to Mexico - see if I care. If that's your best argument, I'm finished with this topic. Please quit discouraging others.


                          • #43
                            cjo- you're living on fantasy island!

                            I've been lobbying our Senators for 2 years non-stop, along with giving to Christopher Reeve Paralysis foundation. I have been in touch ( talking with) with every company in the country that has had SCI clinical trials on the front burner for 3 years, christ, I've visited more than half of them in Mass, Albany, NYC, and spoken with some of the directors of the proposed SCI trials!
                            Quit discouraging others! I am reporting what I have seen and been told for over 3 years from some of the most cutting edge scientists in the U.S. I am not gonna alter what they told me to appease newcomers and tell them what they want to hear!
                            These may only be opinions', but they're coming from many of the people who are dedicating their time to help!
                            Outside of the US, the only guy I've corresponded with is Dr. Lovell-Badge, who is very concerned with the loose "cure" terms flying around.


                            • #44
                              Hey I've been quoted. Cool. [img]/forum/images/smilies/cool.gif[/img]

                              There are many comparisons to SCI progress one can use. I like to think of aviation. The first flights were a joke compared to commercial travel today. It wasn't pretty but it was flight. And flying got MUCH better with time.

                              That's where I think we are now with SCI progress. I don't need to fly on the Concord today. I'll take a Cessna for now thanks.
                              "Oh yeah life goes on
                              Long after the thrill of livin is gone"

                              John Cougar Mellencamp


                              • #45

                                How long have you been paralysed? - it can be a long long wait for a cure.

                                However, there are reputable groups who are more optimistic about the prospects of SCI treatment - what about Wise Young? The Brisbane group have started clinical trials. Geoffrey Raisman in London should be starting trials in the very near future - Lima in Portugal has had some limited positive results, and the results of intensive exercise have been proved by several places.

                                Paralysis is a most tedious and dreary condition to live with because so many pleasure once enjoyed are gone and those you still have are a struggle.

                                I couldn't live like this unless I thought a cure were possible and this forum is great for keeping up to date