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Thread: So what now??

  1. #11
    Senior Member 0xSquidy's Avatar
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    This is like the religious confrontations. I'd write a ten page post explaining why I think you are terribly wrong in some aspects, but then i realize (more in cure than in religious discussions) it will do nothing but hold your misunderstandings for a couple of months and i'm too lazy for this right now.

    Yes, nobody knows when we'll get fixed. If you want to hold on that, ok. If "waiting" for miracles while whining here from time to time is what you guys think is best, then ok.

    I think we are not cured yet, EXACTLY because of those attitudes. So yes...not a good plan...
    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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  2. #12
    Senior Member cpaul's Avatar
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    0xSquidy

    I see from your join date to this forum that you might be a newer member to the SCI community so if that is true then your reply is understandable. Also you look from your picture to be in your 20's. I remember when i was first injured the mind set that was present. I rarely post here- read a lot- but post little so whining is not in my profile, however what concerns me and i think as well for the older members with SCI is the fact that we dealing with not only everyday age related issues but also SCI on top of that. I for one believe that this will be figured out. That being said I am concerned that it will not happen in my useful lifetime. I can't see where a cure showing up when I and 72 having the energy and ability to take advantage because there will be other things required to become a normal functioning human being again. And the truth is we are all aging in the process. Those of us playing somewhere on the back "nine" of life have a legitimate concern in this regard. I truly hope the next five years makes some significant progress beyond, donkey's, rat, monkeys, pigs. I'm just tired of reading the same old proclamations for the past 10 years. Some here have been swallowing this for much longer. The Davies thing is still a hold out so we'll see what he has to offer in days ahead. The bottom line. Time! and it ain't slowing down for anybody and you just get more tired in the process.

  3. #13
    Quote Originally Posted by cpaul View Post
    0xSquidy

    I see from your join date to this forum that you might be a newer member to the SCI community so if that is true then your reply is understandable. Also you look from your picture to be in your 20's. I remember when i was first injured the mind set that was present. I rarely post here- read a lot- but post little so whining is not in my profile, however what concerns me and i think as well for the older members with SCI is the fact that we dealing with not only everyday age related issues but also SCI on top of that. I for one believe that this will be figured out. That being said I am concerned that it will not happen in my useful lifetime. I can't see where a cure showing up when I and 72 having the energy and ability to take advantage because there will be other things required to become a normal functioning human being again. And the truth is we are all aging in the process. Those of us playing somewhere on the back "nine" of life have a legitimate concern in this regard. I truly hope the next five years makes some significant progress beyond, donkey's, rat, monkeys, pigs. I'm just tired of reading the same old proclamations for the past 10 years. Some here have been swallowing this for much longer. The Davies thing is still a hold out so we'll see what he has to offer in days ahead. The bottom line. Time! and it ain't slowing down for anybody and you just get more tired in the process.
    cpaul, I agree with what you are saying, I am in the same boat as you, I've been SCI for nearly 30 years now and see very little light at the end of the tunnel, well maybe the very end of the tunnel when I'm laying in a nursing home when I'm 75 years old with a destroyed body after 50 plus years of SCI and then the "Cure" is available. Like you said though by then it will be too late for those who were long term paralyzed after so many years past by of politicians and scientists poking around at the cure for so many years. Good point also about where was the Miami project?
    "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

  4. #14
    Curt, as time apsses; many if not all of us, think about what might of been. I keep reading about time limits on potential stem cell treatments. maybe an improvement for us all on bowel. bladder, seual fuction; hey it is what it is. I feel treatment sofr acutes in the futre will keep them from being wheelcahor bound; that's a good thing. We'll see

    keepinmg on

  5. #15
    this did turn into a downer post. i cant believe that with all the trials that are starting soon, that we wouldnt have something available within 2yrs. we gotta keep pushing the scientist. i believe were on the verge of big, meaningful discoveries, trials that will impact us positivley. i mean something has to give, with dr wise, dr davies, geron, stem cell inc, and others something has to stick. remember this isnt our fathers science, todays science truly moves at an exponential rate.

  6. #16
    ineed, your right; it would seemso, anyway. We need trials and successful results in a hurry. Hopefully these trials for als, ms, and spinal cord, will bring a new day of science and hope for all of us. It seems close but so far away. Everyday, on tv, we see new breakthroughs for vaious ailments and therapies; someday ours will come.

    keeping on

  7. #17
    cpaul, I hear you; time passes and we still look for hope. Once again, I see therapies for acutes that will bring light to a long darkness. the future bodes well for them. I still have hope for treatment for chronics that will provide better quiality life. We need some test results that show a visible improvement to the individual and not going from a-c or d-f. I think we will see some progress but for many of us maybe too late.

    keeping on

  8. #18
    Senior Member Schmeky's Avatar
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    These meetings like W2W have been occurring for years, the main changes are the old researchers are gone, being replaced by the current crop. Things are moving, but they will occur much slower than anyone would prefer.

    The beliefs and attitudes of those with SCI change through the years.

    First, there is shock and disbelief
    Second is adjustment
    Third is an information search
    Fourth is hope
    Fifth is realization and coping
    Lastly there is survival

    Most of the older members are in the survival category. Most newer members are in the hope category. Please remember all of the survival folks were in the hope category many years ago.

    I would love to see the newer members have access to a new category: recovery.

    Only time will tell.

  9. #19
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    Schmeky,
    Your rational is true. I was injured less than four years ago. Long enough to be in a survival category. I was hopeful when Geron finally emerged with a study. I used to follow their stock. I was very disappointed when they only conducted a clinical trial on one person. It was a tactic Geron had to do too keep the stock a float and money coming in. It is always about the money with these bio-tech companies. I do feel there is more effort the last few years then ten years ago. Who knows what will happen. I do feel Re-walk and E-legs will work hard to get all of us standing for a fair price in time. There is money to be made on equipment.

  10. #20
    Senior Member 0xSquidy's Avatar
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    I understand what you say cpaul. The attitude that I complain about is not the "i'm too old for this shit", I couldn't have an opinion on that, you got that right i'm a rookie.

    My complain/question is: what is that 99% people with the same SCI experience that you have, have done in those 10, 20 or 30 years to push research? To think of cures, to get them close? Yes, 99% will be "nothing" or timid attempts. Everyone's expecting for miracles, cures to fall down of trees.

    So yes, of course we aren't cured yet. Weird thing would be have a cure with no effort.

    And just for the sake of it people, don't put everybody in your sack just because you were/are in it. Not everybody is the same, not every SCI is the same.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

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