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Thread: How much longer?

  1. #111
    Senior Member Norm's Avatar
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    I still feel were 10-15 years away for Chronics. I just hope I'm wrong.
    "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

    -Christopher Reeve on his Paralysis

  2. #112
    Senior Member lynnifer's Avatar
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    Maybe we're just all thirsty for some good and 'new' news. We were getting a steady stream of it when I first joined up with CareCure. That well has run dry for a while it seems.

    The posting by Max got to me too. He was always one to post timely topics on the latest.
    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

  3. #113
    Quote Originally Posted by Schmeky View Post
    Just read through this 2 year old thread. Max is gone, several members in this thread don't seem to post much, if at all, nowdays.

    We're still hearing 5 more years . . . . . .

    The more things change, the more they stay the same.
    Hard to believe I was making plans to go to China six years ago.

  4. #114
    Quote Originally Posted by Boggs52 View Post
    For all the good that Christopher Reeves did as far as raising funds and awareness, I consider as having been obsessed with a "cure" to the point of unhealthy. And being well off enough to afford PT all day every day put him in a world totally outside of the my sci world. I quit worrying about a cure a loooooong time ago. If it happens, fine, but I am not holding my breath waiting for it. When and if there is a cure the first likely candidates will be newly injured, likely incompletes, and likely young. I am betting that long time completes who are in my age group, 50+, will not be seeing it used on them. In the meantime, I have a life to live.
    Wise's trial is for complete chronics.

    CR was a vent dependent high quad who wanted a treatment to improve his condition and invested time and money towards that goal. There was nothing wrong with that IMO.

    One can live life and hope for a cure, they aren't mutually exclusive.

  5. #115
    Senior Member Schmeky's Avatar
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    Quote Originally Posted by Leo
    i'm 50+ c4/5 complete and am preparing to be in the phase 2 trial of the www.nascinet.org
    Help me out here Leo. I don't log on to CC very often, but I am aware of the NASCINET. Tell me how you are able to get into phase II, I thought a phase I had to be completed first.

    I really don't know this.

  6. #116

    Cool Why dwell on it?

    Live life. I've been a sci for 32 years. Have a degree, wife/family, home and peace of mind I'm living my life and enjoying it. You might have a long wait..... might as well make the most of it
    Lynarrd Skynyrd Lives

  7. #117
    Quote Originally Posted by antiquity View Post
    Wise's trial is for complete chronics.

    CR was a vent dependent high quad who wanted a treatment to improve his condition and invested time and money towards that goal. There was nothing wrong with that IMO.

    One can live life and hope for a cure, they aren't mutually exclusive.
    Christopher was fortunate to have Robin Williams helping with the bills. When he was injured he immediately sold his plane and a few other things. He was not as wealthy as percieved. His focus was initially solely on cure but matured to care as he realized few others could focus on improving their condition through therapy, FES & the abdominal pacer. His foundation funds care & cure research as well as pushing advocacy for policy change. I met with him 3 times and he worried that if he let up on the cure message the momentum would falter. I believe he placed a large step up for the community. The only shame is that it takes a famous person to hold the stage when there have been so many voices for so many years.

  8. #118
    Quote Originally Posted by Schmeky View Post
    Just read through this 2 year old thread. Max is gone, several members in this thread don't seem to post much, if at all, nowdays.

    We're still hearing 5 more years . . . . . .

    The more things change, the more they stay the same.
    By gone, do you mean no longer an active member here, or deceased?

    Just curious.

    Thanks in advance.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  9. #119
    Super Moderator Sue Pendleton's Avatar
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    Max Bily died last month.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #120
    Quote Originally Posted by Sue Pendleton View Post
    Max Bily died last month.
    I'm sorry to hear that. May he rest in peace.

    * * * * *

    To try to contribute to this thread, my approach to "how much longer" is to get busy both living life as best as possible now, and preparing for if/when function-restoring therapies arrive (I believe they will, probably between 3-10 years, but we're not guaranteed to be here tomorrow, so we should try to enjoy today -- however, I personally am planning to live many more years, so I choose to live today while preparing for and keeping an eye on the future).

    That's why I'm largely focused on furthering my education, which I hope will eventually make me financially independent, regardless of how much longer I'm paralyzed. Everyone who reads this post has Internet access, and therefore should also be able to further their education if desired and/or needed (my return to school was/is through online programs; the key is to find quality, accredited online programs).

    If interested, I wrote something intended to potentially help someone attending an SCI support group. It's on my website here:

    http://www.lookmomnohands.net/My_Ful...ort_Groups.htm

    Bill Miller
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

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