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Thread: I want combo trials, and now!!

  1. #251
    Hey Rd, I really don't want to go thru the entire 25 pages of posts on this subject, but it seemed that there was some understandable frustration in many of them. I think it kind of hit me on the head with Lief calling out Lynnifer and the other moderators as lazy butts and not having time for naysayers; that we oldtimers were used to being in a chair so don't care about the cure.

    I agree with your assessment of partial cures. I wish I would have expressed it better. I think that is what I meant about the advancement of health issues. From what I read, it seems that most were speaking about gettin' up and walking type cure.

    I hope I didn't offend too many lol. It may be more of a frustration on my part of those not recognizing/knowing how far we have come and the time and energy it took to get us to this point. Trustfully, someday there will be the cure but for now, all we can do is get ready for it.

    Thanks for the reminder RD, I will be more cognizant in the future.

  2. #252
    Senior Member rdf's Avatar
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    I understand. Their is much frustration in all our lives, and much passion, too. Sometimes I find myself feeling too much of both at the same time.

    Leif and OxSquidy were out of line. They need to make it good with Lynnifer and the other mods who volunteer their time and effort for all of us.

    -Bob
    Quote Originally Posted by Patrick Madsen View Post
    Hey Rd, I really don't want to go thru the entire 25 pages of posts on this subject, but it seemed that there was some understandable frustration in many of them. I think it kind of hit me on the head with Lief calling out Lynnifer and the other moderators as lazy butts and not having time for naysayers; that we oldtimers were used to being in a chair so don't care about the cure.

    I agree with your assessment of partial cures. I wish I would have expressed it better. I think that is what I meant about the advancement of health issues. From what I read, it seems that most were speaking about gettin' up and walking type cure.

    I hope I didn't offend too many lol. It may be more of a frustration on my part of those not recognizing/knowing how far we have come and the time and energy it took to get us to this point. Trustfully, someday there will be the cure but for now, all we can do is get ready for it.

    Thanks for the reminder RD, I will be more cognizant in the future.
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  3. #253
    A person can feel the cure window closing on them personally and still be willing to push for curative therapies. Advocates would be well-advised to not scoff at old-timers. I've done this quite a while and it tends to be the more "mature" that have the patience and the foresight to stick with it.

  4. #254
    Quote Originally Posted by betheny View Post
    A person can feel the cure window closing on them personally and still be willing to push for curative therapies. Advocates would be well-advised to not scoff at old-timers. I've done this quite a while and it tends to be the more "mature" that have the patience and the foresight to stick with it.
    You are so right Betheny. Many of us oldtimers have contributed more to cure research than many of the young hand wringers and chronic complainers. As I have said before, I feel obligated to work for the wellbeing of present and future SCIs just as those who were injured before me advocated for improvements that have made my life better. We "old" folks are not limited to thinking only about ourselves.

  5. #255
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by patrick madsen View Post
    Trustfully, someday there will be the cure but for now, all we can do is get ready for it.
    You gotta be kidding there. Is that ALL we can do? OMG
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

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  6. #256
    It's ok to tout work for the future and for those that are coming. I think it is not fair to preclude that nothing can be done for us. New things are happening all the time. Bottom line is that therapies are coming; we should be focused on that. Touting work for others and giving up on ourselves is plain wrong. All the talk of benevolencey is ok, but keep it to yourself. We can all feel the future for others , but don't forget about the now group. Hope should be higher now due to advancements in science. We need to see successful clinical trials and that is what we chould be concentrating on.

  7. #257
    I'll never benefit from a cure -- not because of my age but due to the type of SC damage I have -- but I'm still supportive of efforts to advance one.

    My only frustration with quest for the "cure" is when the energy devoted to advocating for it comes at the expense of doing anything at all to help improve the quality of life for PwDs today.

    Betheny, Dr. Young updated his post to reflect exactly what you were saying here about advocacy and CC. Appreciate your clarification very much.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  8. #258
    Good point Hip.
    Keeping On, there were many, many trials in the earlier days before guidlines were setup for saftey concerns. Many were outright goulish; taking your lats and stretching them down and attaching them to your knee was one. I knew of an elderly, now quad who had this done in the early 50"s as a young child. She was a T/12 and after the experiment, was a high level quad with many complications. I agree, it would be nice to see some advancement in trials. There's many going on right now, especially with hand function using fes etc.

    Are you willing to participate in any trial that comes along. If so, what are you doing now to prepare for them. I understand you want the researchers and doctors to come up with a solution; that's their responsibility. Ours is to help raise whatever they need and to maximize whatever we have left to help ensure a successful end. Wise mentioned some preliminary guidelines for choosing participants in his memo from Taiwan. Look them up and work towards that goal.

    Oxy, that's a lot. We must be ready for it when it comes and if it doesn't come we must maximize ourselves to drag our sorry asses thru life.
    Last edited by Patrick Madsen; 05-03-2010 at 01:02 PM.

  9. #259
    Quote Originally Posted by keeping on View Post
    It's ok to tout work for the future and for those that are coming. I think it is not fair to preclude that nothing can be done for us. New things are happening all the time. Bottom line is that therapies are coming; we should be focused on that. Touting work for others and giving up on ourselves is plain wrong. All the talk of benevolencey is ok, but keep it to yourself. We can all feel the future for others , but don't forget about the now group. Hope should be higher now due to advancements in science. We need to see successful clinical trials and that is what we chould be concentrating on.
    "Keep it to yourself.."

    Exsqueeze me? LOL, you telling ppl what to think and say? How old are you? Any other health conditions? How long post-sci?

    You aren't qualified to judge the motives of others. If it happens to be benevolence, accept it and say thank you.

  10. #260
    I'm saying that trials , legitimate trials, are a present thing. I'm aware of the past experiments; keenly aware, and don't want or even consider those for myself or anyone. We must focus on new therapies that are becoming available and follow closely to ascertain their effectiveness, and for sure, their safety. There coming.

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