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Thread: Where is all the good news?

  1. #21
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    now that was real good.. Stated on your car insurance I love it..

  2. #22
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    Thumbs down what to do?

    Now that all of us complete chronics realize that any therapies, if they were to happen, will pass us by. Half of us will be killed off by consecutive UTI's, others will go on leading celibate lives and be content with it, while others like me will not be content with being rendered neutered for life ( what a terrible fucking fate, just awful ), and will either end it all or be shipped off to a looney bin. That's the scary fact about SCI, doctors at a looney bin would emphasize with your agony, who wouldn't? But you can always rub your nipples and/or ear to get off, as many so-called hack experts like to point out in their pathetic little SCI handbooks on sexuality. Anyone who has been completely neutered by SCI, and who is content with the status quo, must never have had any expectations in life. I almost had a girl earlier this summer, though she never even came close to taking off my pants or zipper, while my legs spasmed uncontrollably, and I let her think that that was me moving them. The second she found a catheter package in a room, that was it, she took off. Now some may say, " well, that's shallow of her, and you need to find someone who can handle catheters, spasms, UTI's, impotence, with complete inability to feel and/or ejaculate, endless hospital visits, always leaving a hospital after some procedure to make sure nothing is getting worse, and always leaving at best, the same complete SCI you were when you first came in. The amount of time I've spent in hospitals, or doctor's offices since 1999 has been endless, and worse, hopeless, since at the VERY, VERY best, all they can do is something extremely slight and modest. But real, life enhancing improvements, where you go to a hospital, not for a SCI related illness, but to actually get better, are for dreamers and the non-realistic. The future, in terms of improvement of quality of life, is looking extremely grim.

    So, how's your day so far?
    sherman brayton

  3. #23
    Quote Originally Posted by Curt Leatherbee
    I just get so frusterated myself after waiting 25 years.

    I was really troubled though when I found out the other day that Dr. Macdonalds new FES bike was 15 grand, I thought they were going to try and make their bike accessable to the average SCI, What ever happened to that idea, it was suppose to be $7500.00 as it stands most people will not be able to afford it.
    Curt,
    Is that why your selling your babies?
    DAMN is all I can say if that is why?
    The all it can take just keeps on takin'.
    Life isn't about getting thru the storm but learning to dance in the rain.

  4. #24

    Smile

    ''The future, in terms of improvement of quality of life, is looking extremely grim.'' SBDSPRAY

    You're damn right it is with an attitude like yours. Totally unsubstantiated opinion - I mean why are you even bothering to pollute cure forums. Because you're a fraud thats why - I know and you know that you dont truly believe what you say but you'd rather wallow in self pity than admit that you're age old 'reasonings' are now forced to be brought into question as we enter the turn around period for SCI sufferers. Then you'll no doubt be a hypocrite and take advantage of those procedures supported and advocated by people braver than yourself at this moment in time.

    Don't get me wrong, your posts have no effect on me but to make me smile at your ignorance. Im a little bit better informed than that! What worries me is that your bs is NOT condusive to, say, new afflictions seeking a bit of support and guidance from this website. I often smile at what some non-believers say, I mean we are all entitled to our own opinions. With you however i simply had to comment as what you say is A. ridiculous, B. Im not convinced you believe in what you say yourself and C. could be ultimately damaging to a more vulnerable or newer member.

    So Id recommend anyone reading this to bear in mind that this particular member of carecure is hiding behind his ultimately FALSE statements and WILL be proven wrong in due time - Thank god!

    Have a nice day now!

  5. #25

    You are on the right track, Curt

    Quote Originally Posted by Curt Leatherbee
    Things most Certainly are getting better. Why we have Carbon fiber wheels these days, didnt have those in 1950, We have Titanium frames, we have handcycles, we have better Caths, I mean I could go on and on. Oh and by the way, we have a new $15,000.00 FES bike Created by one of the worlds leading SCI Researchers Dr. John Macdonald, Business is great in the field of SCI, who needs a cure?
    I think it's for that reason advocacy be really grass rooted and no ties to any organization, be it CR, StemPac, CAMR. As soon as you have an organization it becomes more important and takes on it's own survival and self preservation. And you become a instrument to help them. Even non-profits have a payroll. And sometimes people on their boards see it as a stepping stone to a position in either corporate America or political in nature. When the aids people marched they weren't seen as part of an organization, just people wanting a cure for aids-Do we have that yet with paralysis or sci? If anything the organizations rallied behind the protesters, not the protesters rallying for recognition of the orgs.
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

    StemCellBattles

    Support H.R. 810

  6. #26
    Senior Member mk99's Avatar
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    Talking

    Welcome back Brayton. -)

    I was starting to wonder where you've been. We missed 'ya around here.

    BTW: I'm not a big believe in conspiracy theories. I don't believe that any foot dragging by the establishment (and I think there's been LOTS) has been directly a result of them making money selling catheters. Out of date medical training, lack of funding (private & public) and unrealistic pessimism are much bigger culprits.
    Last edited by mk99; 08-20-2005 at 08:43 PM.

  7. #27
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    Thumbs down pixie dust

    pretty pixie-

    Don't get me wrong, I hope you're right! But until you investigate deeper, ask more questions, go through more unwavering hell, your statements, while positive, don't hold much weight. And I'm not referring to you personally, but there is nothing to back up these wish fulfillments. What am I supposed to say when all I've been told by seriously established doctors and researchers ( not that I have respect for them, I don't, but they are considered established ) is that there is no imminent relief to chronic, complete paraplegia anytime soon, if it all. Maybe some people can, but I can't just walk away from this with a positive attitude, I'd feel as if I'm deluding myself. What we will see however, is more series of articles and news reports showing promising results in acutely injured mice, and other insects, with the final statement being that tests in actual human beings is several years away. After several years of hearing it's gonna be several years, which I was first told by some hotshot at some Texas Anderson Center in 1999, you start to get jaded, and can't help but think relief is out of reach.
    sherman brayton

  8. #28

    Wink

    Quote Originally Posted by sbdspray
    your statements, while positive, don't hold much weight.
    Why be so damning though, i mean a treatment such as Dr K's, whilst in its infancy, could hold the key for example and yet you won't even acknowledge this. Look, i understand you have been let down in the past and could likely graffiti the whole whitehouse with numerous depressing sci experiences, but you can't give up now. Take inspiration from those who remain hopeful and accomodating despite suffering their injuries a decade or so before you or I. It would break my heart to think you didnt have an ounce of belief......but its cool as I can tell you do.

    It is coming.

    How do I know? Just trust me.

  9. #29
    Senior Member Schmeky's Avatar
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    Sherman,

    There are days I feel the same way you do. There are days I feel the same way PrettyPixie does. It wears me down.

  10. #30
    Senior Member Tim C.'s Avatar
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    Schemky, I'm with you, depends not if, but just how ..

    ...bad my day sucks.
    Sherman, don't let the fantasists deter you. You have a rightful place on this site. You inject the here and now realism to these forums. Yes, your commentaries fly in the face of the core synergy of this site. Yet, I can find your posts refreshing, especially when you stir the Pied Piper's most objecting from out of the woodwork. If nothing else, let Sherman's diatribes energize us to revolt against the system that keeps us in these fucking chairs.
    Otherwise, let's face it, we are too small of a population to be enough of a lobby to demand help to get our bodies back. I regret my pathetic, perverse, sick interest in following the tragedies of socially wellknown in order to see if their injuries end up like ours. Sick thinking, but if one of GWB's closesets become sci, we'd see a reverse Texas two-step for starters.

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