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Thread: New treatment offers better hopes for victims of spinal injuries

  1. #41
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    Quote Originally Posted by lynnifer View Post
    Let's talk when you've had 25yrs of paralysis pass by ... my frustration is justified, moderator or not. If I am no longer allowed to express my opinions on this website, I'll gladly give up the moderator moniker. In a heartbeat!

    I return to work full-time on Friday. Hopefully I won't be spending as much time here anymore, because it is depressing (the highest complaint I get of new members). I have been wallowing and proving that misery loves company.
    This didn't answer my question.

  2. #42
    Quote Originally Posted by lynnifer View Post
    I admit to having the same negative attitude as of late. I like that DA has the attitude of holding 'the feet to the fire'. Always have.

    I wonder if this is a natural progression of this website intended for care and cure information? There are lots of us 20+yrs paralyzed .. this website has been in operation for approximately half of that time .. and many of us realize we won't see anything, despite donating and raising awareness in the past?

    It's akin to the adult child who never grows up and always relies on his parents for money to live .. an exercise in frustration and something that won't change .. an investment with little to no return.
    I think that Scott summed it up nicely:

    The cure is basically vaporware... akin to consumers waiting and waiting for a hyped-up retail product to be released. The community has and will continue to mobilize and advocate, but the numbers of dollars needed is awfully large relative to the size of the customer base who is active in pushing for the "manufacturers" to release their "product."
    Besides being small, the customer base is also poor. The average SCI makes less than 10G's a year. As Betheny pointed out, the AIDS community had a lot more buck behind their bang which is why that funding movement received more attention.

    I still believe that some type of mitigating treatment will be available in my lifetime which I suppose is why I continue to donate. A constant funding stream is a lot to ask for when the return isn't guaranteed.

    I'm glad Dr. Young explained the bench to bedside process in more detail. For years I thought that well funded research would lead to a cure but it seems that although funding research may help scientists advance their work, it won't lead to clinical trials unless it catches the eye of a pharmaceutical or biotech company. So, donating to researchers is a gamble that may not pay off. I guess our fate ultimately lies in the hands of big pharma. If the researcher turned salesman fails to successfully peddle his product, the big dogs won't bite, irrespective of its potential.
    Last edited by antiquity; 03-09-2010 at 09:05 AM.

  3. #43
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    Quote Originally Posted by 0xSquidy View Post
    I started a thread in this forum asking for unity, ideas, effort or any kind of implication from this community and i haven't read a single post of support from you there.

    What about the "be the change you want to see in the world"?
    Exactly! As usual, I see a lot of talk... I'd like to see some action! You all have the opportunity to get involved and take charge of your own destiny. I admit it may be a bit scary but the alternative is not that great.

    Pierre Rondio has been on the frontline for years, striving to keep the Neurogel therapy going. Today, Pr. Sykova announces she is prepared to go to human trial. What more do you want? We must give them a hand.
    gretchen 1

  4. #44
    Quote Originally Posted by jim sampson View Post
    what in the heck is a mardy bum?
    Ha ha! Sorry guys, I forgot this was a global forum - my bad. Mardy is a northern English term used for being "sulky" or bitter about one's life .

    http://www.urbandictionary.com/defin...rm=mardy%20bum

    On a serious note though, I think all this bickering is hiding the obvious fact that what we ALL want is transparency in the field of cure research and I believe that we as a community can help with that. It is not a THEM and US scenario between ourselves and the scientists. We need to help manage the situation constructively - manage the mavericks if you will.

  5. #45
    I believe that you cannot stop science and technology. I recall fetal tissue being used for syringomyelia but there was no significant improvement as we all hoped at the time. Melissa Holly went to Israel with an acute injury where they used macrophage therapy, but the results were not impressive. Some of our members have gone overseas for experimental treatments without much fanfare. Bilby had fetal cells from pigs injected into his spinal cord right here in the United States, without any real improvement. Going back to SpineWire, I remember Dimitry going to Russia for stem cell treatments. It seems that there has been a lot of trial and failure.

    I would like to think our future will be more like a Jules Verne wonderland, and not a Franz Kafka nightmare.

    Also, if you take enough swings at the ball you're bound to hit one out of the park.
    The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
    --General George Patton

    Complex problems need to be solved collectively.
    ––Paul Nussbaum
    usc87.blogspot.com

  6. #46
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    Getting off track again. I believe the Neurogel therapy will work, but I also believe we won't be getting any help from the SCI community. Too many disappointments, people are afraid to hope and invest time and money.... as a result, this therapy which is very promising, will be made available later rather than sooner...

    All this negativity is depressing and does not help any of us. Why don't you look into the matter instead - read Pr. Sykova's publications, write to her and ask her questions. It would take more time but it might be more productive.

    I am not sure what Jules Vernes or Kafka have to do with this, except that I don't think either of them were whiners; however, I do know that Pr. Eva Sykova has been working on hydrogels for over 20 years. She is a noted scientist. Dr. Young knows her and respects her work. She says she is prepared to move to clinical trial. If this is not enough to at least spark your interest, it is time to close this thread and move on.
    gretchen 1

  7. #47
    Quote Originally Posted by DA View Post
    that is not exactly the whole story on getting therapies to the bedside. second, it was more than 1 member filing lawsuits, Wlll just got all the attention. third, the forum fully backed Amber unlike the losers today.

    maybe we should raise our own money and find our own cure. the greedy medical establishment wont do it even as they take our money directly and through taxes in the name of cure. would you not call that evil dr young? too take from us in the name of cure with no intention of curing us at all....
    DA,

    I agree that what I said was not exactly the whole story of getting therapies to the bedside. The story is also about money and power, not fairness and altruism. if you don't have the money, it doesn't matter if it is not fair. If you don't have the power, you can't tell the person in power what to do.

    Nobody has enough power and money, however, to work on their own, as you are now suggesting. You can only buy so much and force people to do so much. The rest has to be done because of love and guilt. My feet is already on fire.

    Wise.

  8. #48
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    Dr. Young,

    I know you must be getting weary and everyone appreciates what you have done for the SCI community. Money seems to be the key, indeed, but also perhaps collaboration between the best researchers. I hope you will decide to conduct an experiment with Neurogel and why not, team up with Pr. Sykova.
    gretchen 1

  9. #49
    Quote Originally Posted by Wise Young View Post
    DA,

    I agree that what I said was not exactly the whole story of getting therapies to the bedside. The story is also about money and power, not fairness and altruism. if you don't have the money, it doesn't matter if it is not fair. If you don't have the power, you can't tell the person in power what to do.

    Nobody has enough power and money, however, to work on their own, as you are now suggesting. You can only buy so much and force people to do so much. The rest has to be done because of love and guilt. My feet is already on fire.

    Wise.
    OK, it can not be put more CLEARLY than this. Thanks Dr Wise.

    I just read this thread and i think some people are bordering on delusional. "Stealing" cures and finding your "own cure".. please. Unless, you are a top-level research neurologist, but I have the suspicion that is not exactly the case. Desperation can lead to nonsense, and will.

    By the way, "holding scientists accountable" does not sound like a realistic proposition unless you have signed a contract with the scientist where they agreed to produce a cure for you in an agreed time frame. It is my fault though, i should be working and making money, as well and engaging my brain with thoughtful material instead of posting in the cure forum!

  10. #50
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    Quote Originally Posted by agnes View Post
    OK, it can not be put more CLEARLY than this. Thanks Dr Wise.

    I just read this thread and i think some people are bordering on delusional. "Stealing" cures and finding your "own cure".. please. Unless, you are a top-level research neurologist, but I have the suspicion that is not exactly the case. Desperation can lead to nonsense, and will.

    By the way, "holding scientists accountable" does not sound like a realistic proposition unless you have signed a contract with the scientist where they agreed to produce a cure for you in an agreed time frame. It is my fault though, i should be working and making money, as well and engaging my brain with thoughtful material instead of posting in the cure forum!
    when they took the money for research is the contract.

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