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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #501
    Quote Originally Posted by Jennifer1 View Post
    Tell me more about your Kunming trip. I'd be interested in seeing if it would help me.

    I'm an L1 incomplete. Nobody seems to be including us incompletes or anything below T12. All the clinical trials I've ran across is T12 and above.
    my friend here in china whom i actually met off this site lives in my city and she too is L. they denied her, stem cells are also useless. its impossible because of grey matter, as jim posted its a different kind of paralysis. im spastic. meaning my muscles tense as soon as I start moving, this then helps with walking. its kind of like a Frankenstein walk but because i have some voluntary muscle function/control i can 'break' through the stiffness. problem is, i cant control my bouncy feet, think parkinson hands. its shaking all over the place, sometimes its good, some times its crazy, it gets real dangerous when im showering and all i can do is pause and relax myself. as for walking, my left leg is strong it can breakthrough it all, i almost have full control over it, but my right leg nope, my quad will lock up every few steps. THIS is why i want to try the deep brain stimulation, stop the bouncy feet and lock up and i can walk EASILY. if ive had a couple of shots of vodka my nervous system calms and i can walk so smooth, but then an hour later bam, its back to frankenstein. and i cant take shots of vodka everytime i want to walk hahaha.

  2. #502
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    Quote Originally Posted by Imight View Post
    my friend here in china whom i actually met off this site lives in my city and she too is L. they denied her, stem cells are also useless. its impossible because of grey matter, as jim posted its a different kind of paralysis. im spastic. meaning my muscles tense as soon as I start moving, this then helps with walking. its kind of like a Frankenstein walk but because i have some voluntary muscle function/control i can 'break' through the stiffness. problem is, i cant control my bouncy feet, think parkinson hands. its shaking all over the place, sometimes its good, some times its crazy, it gets real dangerous when im showering and all i can do is pause and relax myself. as for walking, my left leg is strong it can breakthrough it all, i almost have full control over it, but my right leg nope, my quad will lock up every few steps. THIS is why i want to try the deep brain stimulation, stop the bouncy feet and lock up and i can walk EASILY. if ive had a couple of shots of vodka my nervous system calms and i can walk so smooth, but then an hour later bam, its back to frankenstein. and i cant take shots of vodka everytime i want to walk hahaha.
    Yes you can Imight! You may fall more often but it sounds like a hell of a drinking game to me! Lol.

  3. #503
    That's so exciting! Do you use any devices to walk? Noah is still in full harness support, but this new movement is very exciting. Plus he is 2, not exactly an ideal age to ask him to try harder or work harder lol.

  4. #504
    yea i use forearm crutches but rarely these days, takes too much energy for anything possible outdoors for long distances unfortunately. i used too back in the days, i dunno maybe after the 6.6.6 program that will change.

  5. #505
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Imight View Post
    yea i use forearm crutches but rarely these days, takes too much energy for anything possible outdoors for long distances unfortunately. i used too back in the days, i dunno maybe after the 6.6.6 program that will change.

    I thought that they are considering changing it to a 3.3.3. Program
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  6. #506
    Quote Originally Posted by lunasicc42 View Post
    I thought that they are considering changing it to a 3.3.3. Program
    Not in China.

    We will do as close to as possible to 6-6-6, in the US.
    Last edited by Jim; 02-12-2018 at 09:56 PM.

  7. #507
    Senior Member lunasicc42's Avatar
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    My mitsake, swore I read that somewhere
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  8. #508
    Quote Originally Posted by lunasicc42 View Post
    My mitsake, swore I read that somewhere
    You prob heard it will be tough to do 6-6-6 in the US because of the constraints of our existing rehab system.

  9. #509
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    Jim,
    Was the paper submitted? Why was the paper held up? They have 90 days to respond correct? Thanks.

    LB

  10. #510
    When I went on medical leave the paper was 1,000 pages, it's now 1,500. Just a matter of taking time and getting it correct.

    90 days, yes.

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