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Thread: New suggestions, ideas and opinions regarding thee cure

  1. #1

    New suggestions, ideas and opinions regarding thee cure

    Hi everyone. I would have a few questions regarding the researches in the intent to find the 'cure' or just something to improve our condition, our life. I hope I'm right and you won't think I'm a crazy person. I can't say I have much experience in the area as I'm a quad only since March last year, and respect for all the SCI veterans managed to live their lives without even think about cures, but I do can say that I have a good idea, and from what I've seen and read in this forums, I think that the cure for the SCI or that 'just something' to improve our lives is already there! The problem is that we have to wait in 'agony' and keep suffering and struggling with this horrible life day by day thinking with tremendous sorrow about our life before the accident, hoping that one day we are going to start living again, wait for the right treatment to be found and made available.
    Concerning the latest discoveries towards the cure, I still wonder why do the the researchers not collaborate more, sharing their outcomes in order to take a more viable treatment into trials. For example, let's say that combining the therapies like Neurotrophin-3 with the UCBMC+lithium and with the potassium channel blocker would maybe give better results. And maybe adding the epidural stimulator to help get more movement in order to make a faster axonal recovery. I am just expressing my opinion and I have no means to offend anyone, and I apologize if so, because I might be wrong as I wouldn't have the right knowledge to make this suggestions.
    As I said before I believe that the researchers got the key already. It's just to much politics, regulations and a huge lack of funds to make this whole process moving. We should get all together and start making protests against the governments which is ignorant and doesn't even think about this. We should remind them what hundreds of thousands of people are experiencing and what they need. We need our doctors to make available the long waiting cure, but they need finance to keep working. We need to be so grateful to these people who work their back so hard for us but in order to help us we need to help them which are thirsty for researches and experiments, trials and to touch the goal but the biggest impediment is the lack of funds. I'm not saying this to ask any of you for funding but to rise all together and start requesting are right to get help from the one that does have the power but no willing to help us, which is the government. It's just pitiful and makes me cry when I see many fundraising groups after so many efforts and months or years of waiting, raising a few thousands of dollars, maybe. At this pass we're not going anywhere and our wait seems to be eternal. The government spends billions of dollars each year on ridiculous things that aren't really necessary. We just need a small part of it and to move things even faster we need the government to give the green light for the SCI research by not imposing so many rules and controls asking for so many papers, which makes it all very slow. Those people making these laws just don't care or they're ignorant. We should start speaking up louder, doing whatever is needed to make us heard. Write to the president if possible, get into the biggest television shows, Oprah or something, anything. If all this is done properly we do have a chance to have our life back. The users of this forums are mostly US citizens, where the most of the work is done, and you have the power to try change the things. I live in Ireland where unfortunately there isn't much involvement in the SCI research. But even so I never give up on trying to help every way I can to make a difference.

  2. #2
    I agree with you 100%, we could all do more to push forward for a cure, myself majorly included. But many people become injured and are okay with that, they give up on ever walking again and make the best of what they have left, and just don't care about spinal cord injury research. Others fall into depression, and see it's hopeless. Is both sides and everything in between. My opinion I was injured when I was 20 and I'll never be normal again, I'll never be a premium athlete again, Gene therapy, stem cells, collaborations you name it will never be the way it was. Still the ability to clean myself, have sex, deal with bathroom priorities myself basically a slip out of this hell is a big deal, that may happen in 15-20 years maybe more. But A spinal cord injury is a permanent thing, whether science dies it down a bit, it's still permanent they'll always be some kind of damage (disability) remaining. Which is terrible because most of us had everything we wanted, without realizing it at the time of course, and then in the blink of an eye we made a mistake or someone made a mistake for us and we lost everything. Weather you start rebuilding a new life, or don't, or do a little, or refuse to call it a life etc etc everyone copes with the differently based on who they are as an individual, with an obvious individualized perspective not a matter of strength or weakness it's just that's person inner battle, and inner self.

    Why aren't we seeing more collaborations between labs and researchers. Prime example stem so Inc. and neuralstem Inc. Two companies with the same goal, same idea. Yet are in constant legal battle with each other. Every researcher wants to be the person to cure it, every company wants the patent on that cure. Of course there are many individuals that are strictly out for the good cause, but every person wants their dues. And companies need to turn a profit. Not many pharmaceutical companies that are nonprofit, and really how many nonprofit fundraising companies have CEOs making six figures. Please!

  3. #3
    Senior Member darty's Avatar
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    We are in the minority. Not enough of us for anyone especially the Government to worry about or fund research for. I have been injured C4-C5 complete for 35 years and have herd over and over again about various cures and cure research but no one has been cured. I know it sucks but that's the way it is. If you really want a cure and I think this site has the right idea we will have to do it ourselves.

    There is no money and everyone is afraid to make a mistake and kill someone. Look they can't even cure the common cold so I would just stay the course and try to have some kind of life. Try to stay healthy, be as independent as you can and enjoy your time on this earth. No amount of bitching, whining and moaning is going to get you a cure. I know I won't see it in my like time and if by some quirk of fate or some accidental miracle there is a cure it will be to late for most of us.

    My .02
    Last edited by darty; 07-19-2014 at 06:34 PM.
    ^^(A)^^

  4. #4
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    Darty, here's a well funded foundation with roots in Las Vegas. There's still hope.

    "Foundation keeps memories alive of casino founder who excelled after accident."

    http://www.casinocitytimes.com/artic...accident-62519

    http://chnfoundation.org/
    Last edited by VJS; 07-20-2014 at 01:16 PM.

  5. #5
    Senior Member darty's Avatar
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    I understand that people are raising funds and working to solve the problem but my point is not to hang all your hopes on a cure. I have been hearing the "cure" is only 5 years away for 35 years. I know this existence sucks and everything that goes along with being a Quad but life goes on. I just don't want newer injuries waiting around for the cure because you will miss so much of life. Like I said before in other post my family and I dedicated the first 10 years I was injured to rigorous, daily physical therapy (you name it I tried it) but at some point you need to make a life for yourself. It's not giving up on a cure I workout every day but it's also not giving up on life either.
    ^^(A)^^

  6. #6
    A lot of cutting edge medical research is being done in the private sector because of less red tape. That is not to say the government isn't doing any at all. Every cause takes a champion to have a vision, fund raising to keep the cause and hope alive and scientists to do the work. Nothing happens overnight Craig hospital for one ( that I know of) has shifted some of their focus toward research and they collaborate with other international groups.

    I recognize your frustration. It would be great if everyone in the medical and research community were all collaborative.

    pbr

  7. #7
    Quote Originally Posted by darty View Post
    We are in the minority. Not enough of us for anyone especially the Government to worry about or fund research for. I have been injured C4-C5 complete for 35 years and have herd over and over again about various cures and cure research but no one has been cured. I know it sucks but that's the way it is. If you really want a cure and I think this site has the right idea we will have to do it ourselves.

    There is no money and everyone is afraid to make a mistake and kill someone. Look they can't even cure the common cold so I would just stay the course and try to have some kind of life. Try to stay healthy, be as independent as you can and enjoy your time on this earth. No amount of bitching, whining and moaning is going to get you a cure. I know I won't see it in my like time and if by some quirk of fate or some accidental miracle there is a cure it will be to late for most of us.

    My .02



    I totally understand where you're coming from, other than the whole "missing out on so much life", I don't see much of it as a quad that's just my personal perspective, and that's not to say that others don't live pretty good lives as a quad. I'm sure they do from their perspective, and I'm happy for them. But when people were telling you the cures coming 30 years ago, 20 years ago, even 10 years ago they literally barely had (if any) grounds to do so. BIG difference when compared to 2014, 30 years ago frig maybe even 20 years ago I don't think they even considered it possible to regenerate the spinal cord, now we know it is possible.


    It's coming, there's no doubt in that! But like I said we will never be 100% again. Maybe people that are injured in 2030 more like 2050 will be able to return to normal after an acute treatment, but chronics injuries are permanently disabled no matter where science takes us. The being said we may see massive improvements in our quality-of-life, I'm just saying I'm never going to enter the ring again, and any athlete that is injured is never going to return to their able body sport in hopes of actually becoming a professional athlete. Among other damages and "scars" that will stay with us. And lets face it we may very well see World War III in the next couple of decades, and who knows what other tragedies. Our planet, economy, government, society are not in good shape to say the least.


    And I'm just throwing the obvious out there something very severe happened and say, government shuts down, medical facility shutdown, looting, rioting starts taking place. Us quad are shit out of luck, some are in for horrible deaths, because of the obvious limitations and health issues. A few lucky quads, more likely paras may scrape by, (with an amazing group of people and help) but even still not entirely likely. Let's just say we'd have our hard time pulling our weight hunting, gathering and farming etc morals get pretty tight when people are getting sick, starving and thirsty. And there's not going too be many people giving a crap about making things accessible haha.


    Let's pray nothing like that happens, stay optimistic. Positive power, but there is always the possibility we see it in the news and read about it every day, and no amount of optimism can save someone from that harsh reality if it comes.

  8. #8
    Sign this petition to get a cure faster! We need 100,000 by August 27th to get a response from the White House.


    http://wh.gov/leJXF


    WE PETITION THE OBAMA ADMINISTRATION TO:
    Support a Spinal Cord Regeneration Initiative Project
    Restoration of the damaged spinal cord will improve the lives of more than 5.5 million people in the USA living with Spinal Cord Injuries, MS, ALS, and others suffering from neurological problems. This a humanitarian cause, could reduce federal healthcare costs over $10 billion/ year, and increase the work force.




    We ask the President and Congress to:




    -Increase federal funding for restorative medical research on the chronically damaged spinal cord, proportional to achieving a goal to provide substantial functional treatments and recovery available within the next 2-10 years;




    -Expand physical therapy and fitness access to those living with a Spinal Cord Disease to improve and maintain health;




    -Create a commission of representatives from this community to advise and enact this action.




    Created: Jul 28, 2014




    http://wh.gov/leJXF

  9. #9
    Quote Originally Posted by Silvio GS View Post
    Sign this petition to get a cure faster! We need 100,000 by August 27th to get a response from the White House.


    http://wh.gov/leJXF


    WE PETITION THE OBAMA ADMINISTRATION TO:
    Support a Spinal Cord Regeneration Initiative Project
    Restoration of the damaged spinal cord will improve the lives of more than 5.5 million people in the USA living with Spinal Cord Injuries, MS, ALS, and others suffering from neurological problems. This a humanitarian cause, could reduce federal healthcare costs over $10 billion/ year, and increase the work force.




    We ask the President and Congress to:




    -Increase federal funding for restorative medical research on the chronically damaged spinal cord, proportional to achieving a goal to provide substantial functional treatments and recovery available within the next 2-10 years;




    -Expand physical therapy and fitness access to those living with a Spinal Cord Disease to improve and maintain health;




    -Create a commission of representatives from this community to advise and enact this action.




    Created: Jul 28, 2014




    http://wh.gov/leJXF

    Absolutely thank you very much for this, I'm Canadian, but I'm still sighning.

  10. #10
    Quote Originally Posted by Silvio GS View Post
    Sign this petition to get a cure faster! We need 100,000 by August 27th to get a response from the White House.


    http://wh.gov/leJXF


    WE PETITION THE OBAMA ADMINISTRATION TO:
    Support a Spinal Cord Regeneration Initiative Project
    Restoration of the damaged spinal cord will improve the lives of more than 5.5 million people in the USA living with Spinal Cord Injuries, MS, ALS, and others suffering from neurological problems. This a humanitarian cause, could reduce federal healthcare costs over $10 billion/ year, and increase the work force.




    We ask the President and Congress to:




    -Increase federal funding for restorative medical research on the chronically damaged spinal cord, proportional to achieving a goal to provide substantial functional treatments and recovery available within the next 2-10 years;




    -Expand physical therapy and fitness access to those living with a Spinal Cord Disease to improve and maintain health;




    -Create a commission of representatives from this community to advise and enact this action.




    Created: Jul 28, 2014




    http://wh.gov/leJXF
    I can't believe how slow is this going. If you only have a look like on Facebook and see someone like a dumb famous like Kim Kardashian to get a million likes for a stupid picture of here big ass, or some stupid song on YouTube having 50 millions views... This is ridiculous how we can't even get 100.000 signatures for something so important. People just don't care about others... But we can still try and share this more! Come on people...

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