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Thread: Cheer me up

  1. #21
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by lurch View Post
    This is a genuine question. Do you think that Pharma is genuinely against us. They get more profits from us being in chairs etc etc.
    When I was younger, I used to believe that. It was borne out of anger.

    We are just too small for any kind of huge research push. This is sad and wrong - but I had hoped with the recent spat of cases of Acute Flaccid Myelitis across the US that something would be done. The CDC was even watching the situation ... I mean, who doesn't want to heal flaccidly paralyzed young children? (She asks as she went paralyzed at 12 and is now 45).

    It'll be robotics first, if anything.

    To be honest, I just want Boston Dynamics to make something in wheelchairs - without wheels!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #22
    Quote Originally Posted by gjnl View Post
    Injured in 1982...cure has always been framed in 5 year increments. Yada Yada Yada! Do the math cure not anywhere close in 2018!

    That said, your mantra should be hope for the best, be prepared for the worst and get on with living with your current reality the very best you can. Best guess you will probably die with the current level of injury you have now.

    Sorry to be the bearer of that message, but until someone comes up with a miraculous break through that is some how a grand slam, approved by the FDA, paid for by Medicare or other insurance, (how long do those approvals take..years) none of us will stand up out of our wheelchairs and suddenly be just normal again. After a spinal cord injury, degeneration is so quick, pain response so undefined, you have to ask yourself, if I could turn it all back on would I be in such horrendous pain that the pain I experienced while paralyzed seemed like nothing.

    Sorry newbies, I just don't see cure happening for anyone already afflicted with spinal cord injury. I think the best hope is that some one will come up with a treatment to apply to someone with a newly acquired spinal cord injury in that golden hour. For now that is the best hope. For the rest of us...who knows...just don't set your hopes on some immediate, stand up, and go on with the life you once knew cure.
    Exactly, in 1984 I was told it would happened in five years. 34 years later still the same.

  3. #23
    Quote Originally Posted by easyway View Post
    Exactly, in 1984 I was told it would happened in five years. 34 years later still the same.
    Not at all the same, we have therapies that are returning function.

  4. #24
    Quote Originally Posted by Jim View Post
    Not at all the same, we have therapies that are returning function.
    Yeah they said same thing then .. Sounds very familiar

  5. #25
    There were no human trials being done then, just animal studies.

  6. #26
    Senior Member lynnifer's Avatar
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    Still no animal studies. lol
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #27
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    Stem Cell Implants Improve Monkeys’ Grip After Spinal Cord Injury
    Thousands of axons grew from the transplants and connected to damaged primate tissue, the first such demonstration in primates.
    https://www.the-scientist.com/?artic...l-Cord-Injury/

    Restorative effects of human neural stem cell grafts on the primate spinal cord
    https://www.nature.com/articles/nm.4502

  8. #28
    Quote Originally Posted by Jim View Post
    If these results are repeated this year in our clinical trial networks in the US, India, and Taiwan, there will be much to be excited about.

    gjnl, much of what you said is opposte of our experience in this trial. There was no diffence seen in recovery of those injured from 2 to 17 years. Length of time injured did not effect recovery of bowl, bladder, and walking. If the results are repeated in our upcoming 2b trials, it will quickly go to phase 3, and then be approved and covered by insurance. In the meantime, it will be available under expanded compassionate use.

    There are other promising trials, and many, many dedicated researchers pursuing promising avenues of research. We have solid advocacy groups like Unite 2 Fight Paralysis, that educate, bring more advocates on board, and support research and clinical trials.

    The slow pace is extremey frustrating, but we are getting there.
    Hi Jim, do you mean it is available now under expanded compassionate use or will be after the Phase 2b trials?
    I ask because I'm ready!

  9. #29
    Sure you have hope, as long as you're still alive, there are more possibilities of living a well desired life...

  10. #30
    Ya, but how much good does it do? Very little from what I've seen.

    Quote Originally Posted by Silvio GS View Post
    The electric stimulation should cheer you up. It?s getting very close to coming on the market now.
    "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

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