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Thread: It sure is frusterating with all the good things that seem to have been announced

  1. #71
    Quote Originally Posted by Tbone57 View Post
    So tell me, what are you doing to further the research, besides bombing this forum with your horse shit?
    I donate money to foundations that I support and I am pretty vocal on this board trying to get people to think! I started being nice and giving long responses with ample evidence and people forget it the next day. They refuse to listen because it conflicts with their hopes of walking in 2-3 years. So now I don’t give a shit anymore how I come across.

    I’m not blaming any one person for direction/pace of SCI research. I’m not blaming just those who visit cc. I’m talking about from a macro viewpoint, the SCI community at large. The community as a whole is severely uneducated in terms of their injury and research! It is disgusting. One sect is full of newbies and long-termed SCI who can’t seem to grasp the big picture. Furthermore, another large sect becomes accustomed to their crippled lifestyle and are simply not interested in functional recovery (“cure”). There are very few SCI who, like me, who are realistic about the dire state of research, aware of how difficult of a task it is, and yet still very much interested in seeing recovery and still admit SCI is torture, even if it is permanent.

    You want reality, visit U2FP. I’m not affiliated with them, so don’t associate my opinions with them. But I do believe they are the best force out there. With a very small budget they are directing research for chronic SCI. They actually have real scientists on their advisory board.

  2. #72
    Senior Member Moe's Avatar
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    I understand, so you problem or simply just a lack of attention syndrome is based on what others think and you take the liberty to speak for them... people with sci have to be miserable so that research can move on... most people are dumb and uneducated cause they don't know the state of research as much as you do, which seems to cause you paranoia.... thank god you donate some foundations, who would that be?
    Last edited by Moe; 04-22-2015 at 10:48 PM.

  3. #73
    Quote Originally Posted by Moe View Post
    I understand, so you problem or simply just a lack of attention syndrome is based on what others think and you take the liberty to speak for them... people with sci have to be miserable so that research can move on... most people are dumb and uneducated cause they don't know the state of research as much as you do, which seems to cause you paranoia.... thank god you donate some foundations, who would that be?
    Reeve Irvine and U2FP. I'm not rich and have not given much. I don't expect anyone to. SCI is a very expensive injury. That being said, IF one were to donate, giving $ to scam doctors/researchers is just a waste. Yes, the image of SCI research foundations must be that SCI is horrible. The SCI community that isn't institutionalized needs to back the right foundation(s).

    The cure is nowhere near and basic research must be the central point of this community. Not focusing on bum human trials or safety trials.

    You don't have to be as smart as me to realize that no rat has ever been cured! Not even close. If you can't admit that after being on this board as long as you have then you are missing brain cells.

    Just look back over past 12 years. Different people, same discussions. This community needs to wake up. It's embarrassing.

  4. #74
    Senior Member lynnifer's Avatar
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    I agree with this: Different people, same discussions.

    I can't imagine what it's like to wake up without any hope. Even in my darkest days ... there was always that spark. Three decades later ... and I did everything I was supposed to do in living a normal life.

    Still there. My curiosity is still piqued. Just waiting for medicine/technology/humanity to meet me halfway .. or a quarter of the way ... 1/8th? hehe
    Last edited by lynnifer; 04-23-2015 at 08:59 AM.
    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

  5. #75
    Senior Member Moe's Avatar
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    cute lil' bugger... I think of Stuart little every time I watched that vid... it resembles a lot like the ongoing Spinalon trail, they emailed me to participate their phase II trail here in Montreal. Basically its the same setup; they would give me a drug orally which would activate the CPG for 10-20min and make me walk on a treadmill with me tied up suspended like that rat. I didn't participate though, I didn't find it was worth taking a risk for that little temporary gain and maybe jeopardize a future trial. But hope is still in the air for something bigger to come by...

    I too don't understand ppl that don't believe in 'cures' but yet they log in here all the time to bash the believers...

    Nowhere Man, I find that you chose well your nick name cuz that's where this discussion and the rest of your personal opinions that you treat as facts is going, so to prevent further embarrassment, I'll stop here.
    Last edited by Moe; 04-23-2015 at 10:11 AM.

  6. #76
    Senior Member Moe's Avatar
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    in case anyone would like info or participate, here's the email that I got... its in French. They speak English too.

    Mons,

    Tel que discute au telephone aujourd'hui, voici le formulaire de consentement pour l'etude Tri-Therapie (SpinalonMC) Provoquant l’Activation du Reseau Locomoteur Spinal: Etude Clinique de Phase I/IIa Chez des Patients Blesses a la Moelle epiniere. Je vous invite a me contacter si vous avez des questions ou si vous voulez participez.

    Merci !

    Sasha Dyck, RN
    Assistant de recherche
    Centre Universitaire de Sante McGill
    Cell: 514-242-6834
    Last edited by Moe; 04-23-2015 at 10:44 AM.

  7. #77
    Quote Originally Posted by Moe View Post
    cute lil' bugger... I think of Stuart little every time I watched that vid... it resembles a lot like the ongoing Spinalon trail, they emailed me to participate their phase II trail here in Montreal. Basically its the same setup; they would give me a drug orally which would activate the CPG for 10-20min and make me walk on a treadmill with me tied up suspended like that rat. I didn't participate though, I didn't find it was worth taking a risk for that little temporary gain and maybe jeopardize a future trial. But hope is still in the air for something bigger to come by.
    Moe, you should ask the PI of the clinical trial if this would thwart any future trial enrollments. I rather doubt it would since Spinalon is just an oral drug that leaves the body after a bit. It's not like a permanent alteration of surgery or a stem cell injection of sorts. These dopamine enchancer or agonist drugs are ones that will be used to help the transcutaneous stimulation and possibly the subdural stimulation trials in the future.

    In fact the lil' bugger in the video is one of Courtine's rats that got the stimulation along with the agonist drug delivery. It's a two pronged approach.
    Last edited by GRAMMY; 04-23-2015 at 01:46 PM.

  8. #78
    Quote Originally Posted by Moe View Post
    in case anyone would like info or participate, here's the email that I got... its in French. They speak English too.

    Mons,

    Tel que discute au telephone aujourd'hui, voici le formulaire de consentement pour l'etude Tri-Therapie (SpinalonMC) Provoquant l’Activation du Reseau Locomoteur Spinal: Etude Clinique de Phase I/IIa Chez des Patients Blesses a la Moelle epiniere. Je vous invite a me contacter si vous avez des questions ou si vous voulez participez.

    Merci !

    Sasha Dyck, RN
    Assistant de recherche
    Centre Universitaire de Sante McGill
    Cell: 514-242-6834
    I believe one has to be a local resident in order to take the pill and do the workout participation at the McGill University for the Ph1/lla as stated above in clinical trial.gov
    Last edited by GRAMMY; 04-23-2015 at 05:37 PM.

  9. #79
    Senior Member Moe's Avatar
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    Quote Originally Posted by GRAMMY View Post
    Moe, you should ask the PI of the clinical trial if this would thwart any future trial enrollments. I rather doubt it would since Spinalon is just an oral drug that leaves the body after a bit. It's not like a permanent alteration of surgery or a stem cell injection of sorts. These dopamine enchancer or agonist drugs are ones that will be used to help the transcutaneous stimulation and possibly the subdural stimulation trials in the future.

    In fact the lil' bugger in the video is one of Courtine's rats that got the stimulation along with the agonist drug delivery. It's a two pronged approach.
    Hey Grammy, yes it does make sense that since its an oral drug, most likely the body would eliminate it after a while, therefor it shouldn't interfere future trials... i'll ask them next time.
    But as for my participation to this trial, I gave it allot of thought but I'll pass for now... it's also due to my living status, can't afford loosing working hours as I live alone, mortgage, car payments n all... anyway someone else may benefit from this trail instead and hopefully it will go somewhere. If the trail would of gave some permanent voluntary motor functions or gains, of course It would of been a different story!

    As for if they recruit local residents only, I don't know. its worth giving them a call
    Last edited by Moe; 04-23-2015 at 02:51 PM.

  10. #80
    I think it's the Phase ll-b that may be offered in other locations.

    Here is the last Spinalon LINK

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