View Poll Results: Please answer if you had spinal cord injury:

Voters
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  • I was injured <1990 and recovered more than my doctor predicted

    11 6.75%
  • I was injured <1990 and recovered about what my doctor predicted.

    9 5.52%
  • I was injured <1990 and recovered less than what my doctor predicted

    2 1.23%
  • I was injured <1990 and my doctor did not provide any prediction of recovery

    12 7.36%
  • I was injured 1990-2000 and recovered more than my doctor predicted

    15 9.20%
  • I was injured 1990-2000 and recoverd about what my doctor predicted

    11 6.75%
  • I was injured 1990-2000 and recovered less than what my doctor predicted.

    3 1.84%
  • I was injured 1990-2000 and my doctor did not provide any prediction of recovery

    9 5.52%
  • I was injured >2000 and recovered more than what my doctor predicted

    32 19.63%
  • I was injured >2000 and recovered about what my doctor predicted.

    16 9.82%
  • I was injured >2000 and recovered less than what my doctor predicted.

    8 4.91%
  • I was injured >2000 and my doctor did not provide any prediction of recovery

    35 21.47%
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Thread: The Chronic Myth

  1. #1
    Senior Member spidergirl's Avatar
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    The Chronic Myth

    I have not posted in awhile. I actually have been super busy which has been really nice. There are so many things coming up that I hope I can make it to W2W. I really don't think I will due to personal reasons. But the reason I am posting is because I am so sick & tired of hearing from so many directions that the "chronic cure" is a myth. I simply refuse to believe this. Those of us that can read between the lines do realize that a cure for "acutes" is right around the corner.....but what about us? i know I am human and as strong as I am I get scared like everyone else. I have chose to just move on with my career and my life and try to forget I am in a wheelchair until I find myself gazing into space at beautiful legs crossing the streets so graciously without a care in the world....and of course the myriad other things I can think of.

    We all want to fight for a cure and we all are in our own way ( even if all you can do is raise awareness ). Everything helps. My real question to all and anyone who chooses to answer is can we really believe that there will be a cure for chronics or should we simply just forget it? I am so lost and so confused because opinions opinions opinions are just so superficial sometimes until you ask questions and get some good answers that might make you turn your head and look in another direction. Technology right now is where my heart is at. I truly think I will be a robot one day. I don't know about all you old folks and especially the veterans....but I am lost with advice.

  2. #2
    Just continue to kick ass and take names. Keep yourself strong, keep informed, but live your life. Don´t go nuts about what is coming for chronics. You´ll just give yourself grey hair and you´ll have to splurge $300 + to get rid of it at one of those BH salons. When it comes, you´ll be ready. If you contribute in your own way to SCI recovery/research/advocacy, continue to do so. Your pushing all the right buttons...slap those hands which are trying to push them for you.
    "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

  3. #3
    Senior Member DA's Avatar
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    Quote Originally Posted by wcrabtex
    Spidergirl,
    It is extremely difficult to face the prospect of the rest of your life in a wheelchair. I understand. I think that some are able to adapt to such a devastating change in their lives. They are able to accept and move-on. I envy those people. They have a strength I cannot match. I think there will be effective therapy for chronic SCI. I think it will be a long time to come. I believe the major obstacle is funding. There is simply very little money for SCI research. And that money is divided between research for acute and chronic injuries. Some of the advances for treatment of acute injuries will be applicable, some will not. Much of the research for acutes is directed at preventing progression of the injury. Obviously, those with chronic injuries have missed that window of time. I think the best hope in the forseeable future is for those with acute or chronic incomplete injuries. However, this is far-down the horizon as well. It will happen someday. The when is unknown. I just do not see much in the near future for chronic, complete injuries. I think with adequate funding the timeline would be considerably shortened. Unfortunately, I do not see anything to suggest increased funding for SCI research is likely to happen. You may very well be correct about robotic-assistive devices. There have been great strides in this area. There is tremendous interest in developing assistive devices for military and industrial use. The HAL system is just one of many such projects. I suspect the HAL device would be very useful for many with incomplete injuries at this time. Hopefully, such devices will ultimately be useful for those with complete injuries.

    WCR
    if i was a rich billionaire, a senator, the president, or a young researcher looking to cure anything, after reading your post sci would not be on my list. obvious you bought into everything they trained you into buying.

  4. #4
    I too have not posted in a while, and only did after seeing this dudes sick sti with push button clutch!
    well round 2 years ago when i got shot i started reading this sites forums. Didn't Dr. wize(you know, the awesome dr, who started this site) say within 5 years there would a major(or some word like that) advance for us?(chronics) Isnt there only three (or so) years left Dr. wise? hmmmm? Havnt you moved to china because of funding and stem cell problems here in the u.s.?
    I guess ill have to read deeper to see how thats all coming along? ummm yea....please post the "cure" on the front page when your done
    Can i see spending the rest of my life in a chair. Not Really. Can i see spending ten years in one. Yes. Can i see myself growing old as a para complete. I dont think so. I really dont. Shit my pops, a hardcore alchy, smoker drug user and all around cool guy once told me, " i dont want to live past fifty. He had a live fast, die young attitude, I found him dead at 49, O.D. on heroin. He lived his life. he did alot of cool stuff, i think he was ready to go. Anyway, yea i will continue my dailly struggle for lifes daily glimpses of beauty,,,,,for,,,a while. I wont be able to go on FOREVER like this though.
    I really believe something will happen for us in the next ten years . BUT if it doesnt....i dont know how much more i will deal with. I give much respect to all the "ol timers" and people who knew they would never walk, but continue having happy? lives. I just cant see being "old" by the time they come up with a "cure". Do people actually die para and quad from old age? Fuck that.
    So i now have a live fast /die hard attitude, even more now than when i said fuck you, you fucking fuck, to the guy pointing the gun in my fsce.
    So as i said before, I really hope and believe "it" will be done soon, but if not, ill probably die with some high grade heroin in my system, or at 200 mph, but ill know when that time is and ill have lived as full a life as possable,
    Anyway sorry fur the cursing and morbid thoughts,,,,just the way im feelin

  5. #5
    Senior Member Tim C.'s Avatar
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    I too, log on to CC much too infrequently these days, I guess for

    same reasons I've notice other chronics. As time progresses post sci many of us are found less and less to be purusing the Cure forums. Generally it's the acutes that are preoccupied with the prospect of cure, but interest fades as reality of the situation hits them worse than their injury itself. Their posts become less frequent and then gradually replaced by the next round of acutes full of determination for a cure. It's just a cycle.
    Most long time chronics ultimately assume an apathetical attitude and get on with what's left of their lives. Those who don't can evenually be found on life's check-out line. A person can only put up with so much of this artificial lifestyle.

  6. #6

    Angry heSC

    I am talking about dear GWB. I think when you are in a position of power, the well-being of the masses should be your top priority. Your personal beliefs, religious or otherwise, should come later.
    Don't want to sound bitter, Mr. Bush, unfortunately if there was an SCI to any of your loved ones, will your views remain the same? This is just a hypothetical question. Please don't take it seriously, because SCI is such a cruel thing that I wont wish it on even my greatest enemy.
    Finally, what's the difference between you and OBL?

  7. #7
    Barondidit,

    Welcome back. After a lot of people pushed me to predicting, I did indeed say that my personal hope is that there will be therapies within 5 years. I also included the caveats that all such predictions are not reliable because there are too many factors that we don't control.

    No, I have not moved to China. Nor am I working in China because of funding and stem cell problems in the United States. I am taking a year in China to organize a clinical trial network, called ChinaSCiNet. We are starting trials of combination therapies. Please understand that ChinaSCINet is for China.

    I continue to push in the United States for clinical trials. Yes, I am frustrated by the administration that has not only held back human stem cell research but also has cut back NIH funding, particularly spinal cord injury research. The last election has brought back some hope of change.

    Wise.

    Quote Originally Posted by barondidit
    I too have not posted in a while, and only did after seeing this dudes sick sti with push button clutch!
    well round 2 years ago when i got shot i started reading this sites forums. Didn't Dr. wize(you know, the awesome dr, who started this site) say within 5 years there would a major(or some word like that) advance for us?(chronics) Isnt there only three (or so) years left Dr. wise? hmmmm? Havnt you moved to china because of funding and stem cell problems here in the u.s.?
    I guess ill have to read deeper to see how thats all coming along? ummm yea....please post the "cure" on the front page when your done
    Can i see spending the rest of my life in a chair. Not Really. Can i see spending ten years in one. Yes. Can i see myself growing old as a para complete. I dont think so. I really dont. Shit my pops, a hardcore alchy, smoker drug user and all around cool guy once told me, " i dont want to live past fifty. He had a live fast, die young attitude, I found him dead at 49, O.D. on heroin. He lived his life. he did alot of cool stuff, i think he was ready to go. Anyway, yea i will continue my dailly struggle for lifes daily glimpses of beauty,,,,,for,,,a while. I wont be able to go on FOREVER like this though.
    I really believe something will happen for us in the next ten years . BUT if it doesnt....i dont know how much more i will deal with. I give much respect to all the "ol timers" and people who knew they would never walk, but continue having happy? lives. I just cant see being "old" by the time they come up with a "cure". Do people actually die para and quad from old age? Fuck that.
    So i now have a live fast /die hard attitude, even more now than when i said fuck you, you fucking fuck, to the guy pointing the gun in my fsce.
    So as i said before, I really hope and believe "it" will be done soon, but if not, ill probably die with some high grade heroin in my system, or at 200 mph, but ill know when that time is and ill have lived as full a life as possable,
    Anyway sorry fur the cursing and morbid thoughts,,,,just the way im feelin

  8. #8
    Senior Member DA's Avatar
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    Quote Originally Posted by wcrabtex
    It would appear that you did not understand my post. The development of effective therapy for SCI is a daunting task. It is not for those interested in quick results as are most politicians, investors, etc. So, you are correct that many would and do avoid the field. As I stated, I believe functional recovery for acute and chronic injuries will be achieved. Again I believe the major obstacle is lack of funding. In respect to my education, I do not remember ever being told that SCI (or any other injury,disease) was impossible to treat succesfully. I was in medical school and general surgery residency from 1976-1986. At that time there was no effective treatment for SCI and that remains true today (excluding acutely administered steroids). I do not believe that will always be the case as I have stated repeatedly. We can all pontificate regarding a time line. Nobody knows, just as no one knows what will achieve functional recovery. It is really just a matter of time. The time required is a function of funding. We can disagree regarding the timeline? On what may we agree? I think all would agree that more funding would accelerate the process. If we can agree on that point then we can take the next step. How do we obtain more funds for SCI research? Obviously, there are many resources but the Feds have the big pot. How do we get into the Federal pot? Political influence. We all need to work towards increased funding. If you cannot donate to the cause; write letters, send e-mails make phone calls. DA, I believe you could be a major player in achieving increased federal funding. I noticed you have averaged about 8 posts/day for the past 7 years. You would appear to have plenty of time to devote to fund-raising. Step up to the plate and help us get our fair share of the research dollar. And if you can get it done in the next year or two or ten I will be eternally grateful.

    WCR
    ok, i understand you.

    this is my problem...raise money, write politicans, get more money, hand it to researchers/clincians, they apply it to acutes or better quality of life research. i have seen this over and over and over again. our number 1 goal is not getting congress or bush to fund our cause. i protest should be against the research/clinicians. before we can ask congress to fund us, we must first get the foot out our butt placed there my researchers.

    there was a video on the net. i thought about posting it, but decided against. the video showed a man commiting suicide in protest of Aids. this is what gets the funding, not letter writing.

  9. #9
    Senior Member spidergirl's Avatar
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    I appreciate everyone's views and perspectives. I think we all have our own way of thinking how things might be or will be. At the end of the day though, none of us really know..not even Dr. Young who is one of the biggest researchers/scientists in the world for SCI can give us answers.

    I think many of the answers usually are very vague and ambiguous. In order to get funding we need more awareness and awareness has to come through the media and publicity channels. PERIOD. I have friends that I have grown up with that are becoming producers and are producers of TV shows and reality shows and a couple even starring in them. I asked an agent at William Morris that reps one of my artists about packaging something like this for the media. His response really hurt me. He said "Cheryl, I don't think Hollywood is interested in handicap". Of course I understand where he was coming from but it still hurt. I asked another agent at UTA ( United Talent Agency ) same question and he said he wouldn't even know how to deal with a situation like this for the media.

    I look at it this way. For every 100 doors that's gonna slam in my face, 1 is going to open and we got to get to the media. But, if this is just a myth of us complete chronics getting cured one day than I would have to go into another direction and that would be revolutionary technology and evolution. This is why I ask questions. But like I said the answers are not what I am looking for and probably will not be until there is something substantial for this community to see.

  10. #10
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    Quote Originally Posted by DA
    ok, i understand you.

    this is my problem...raise money, write politicans, get more money, hand it to researchers/clincians, they apply it to acutes or better quality of life research. i have seen this over and over and over again. our number 1 goal is not getting congress or bush to fund our cause. i protest should be against the research/clinicians. before we can ask congress to fund us, we must first get the foot out our butt placed there my researchers.

    there was a video on the net. i thought about posting it, but decided against. the video showed a man commiting suicide in protest of Aids. this is what gets the funding, not letter writing.
    Then why not join up with some researchers and tell them what you want? Then if more funding drips on those researchers, it would not be a “problem”. You sure you understand?

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