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Thread: I'm 2 yrs into the SCI world being told a cure is coming

  1. #61
    Quote Originally Posted by Curt Leatherbee View Post
    I've seen so many things come and go that were suppose to be so promising it's unbelievable. I'll never forget Dr. Harry Goldsmiths Omentum transposition. It was suppose to restore blood flow to the spinal cord and therefore spawn regeneration. They were doing trials (I guess it was the early 90's) at the very hospital I had done my rehab at (Bu medical center) I had a friend who was suppose to go in for the procedure which I think they had already done on 30 or 40 people. It was disaster, there were lawsuits, anyhow when they pulled the plug before my friend went in he was so upset he killed himself. I really learned from that experience never get your hopes up too high, it can be a huge letdown if/when things don't pan out. I think that was the physcology behind my Dr's practice of telling all his patiants they will never walk again. By telling them 5 years when you don't really know only sets people up for a second letdown as if the original injury is not bad enough you go through things again and again as the years pass you by. Not a good way to live.

    It's not all bad though, I don't really know what I have to be sad about, you can really make a really good life for yourself inspite of the disability and thats I did. I guess I've just really been reflecting back on things this past week. I've been going down to beach where I live with my standing wheelchair and standing along the shore with the waves rolling in and the seagulls flying around thinking about what my life coulda or woulda been like had I been standing on my two feet all of these last nearly 32 years. The way you really gotta look at it is some people get around on two legs their lives and others get around on wheels like us, in the end it all really does not matter, what matters is the fact we still got around and did something with our lives.
    Yea that's all nice but for me nothing can replace sexual and bowel and bladder function. That coupled with the plain loss of freedom and dignity I feel, I can't imagine ever getting use to this. Not to complain cuz I'msure many have had it worst but for me spending my prime years (20's now 30's) impotent and in a wheelchair was and is devastating. I honestly feel my quality of life is low and there's nothing there for u. It's like the Chris rock joke "here's a chair wit wheels good luck". A lot of time I really feel no one cares. I kno people are working and raising money but sometimes it's like catching rain. I grow skeptical of people's intentions

    I said in another thread and believe it. I'd give all the rest of my years in a wheelchair just for 1 able bodied week. Just one last go at joy and happiness. They can keep the rest just get me that...

  2. #62
    Curt, kudos to what you have experienced and learned in your time with SCI. We should learn from these experiences to avoid history repeating itself.

    However, what we do have to acknowledge is that until very recently most of the basic science has been conducted in an acute animal setting. But now we have clinically relevant chronic animal model standards which are now form the basis pre-clinical work for real world cures. Yes, it's glacial and there still isnt enough collaboration, funding or focus on chronics but things are better than the picture you paint. For the sake of progress history cannot be used as a stick to beat the field with but rather lessons learned - we need to look forwards with focus, drive and optimism.

    Let's support the core group of researchers and clinicians who are focusing on chronic SCI - and encourage more to join this group! That is something we can do.

  3. #63
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Curt, kudos to what you have experienced and learned in your time with SCI. We should learn from these experiences to avoid history repeating itself.

    However, what we do have to acknowledge is that until very recently most of the basic science has been conducted in an acute animal setting. But now we have clinically relevant chronic animal model standards which are now form the basis pre-clinical work for real world cures. Yes, it's glacial and there still isnt enough collaboration, funding or focus on chronics but things are better than the picture you paint. For the sake of progress history cannot be used as a stick to beat the field with but rather lessons learned - we need to look forwards with focus, drive and optimism.

    Let's support the core group of researchers and clinicians who are focusing on chronic SCI - and encourage more to join this group! That is something we can do.
    Where's the damn like button on this thing!
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  4. #64
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Curt, kudos to what you have experienced and learned in your time with SCI. We should learn from these experiences to avoid history repeating itself.

    However, what we do have to acknowledge is that until very recently most of the basic science has been conducted in an acute animal setting. But now we have clinically relevant chronic animal model standards which are now form the basis pre-clinical work for real world cures. Yes, it's glacial and there still isnt enough collaboration, funding or focus on chronics but things are better than the picture you paint. For the sake of progress history cannot be used as a stick to beat the field with but rather lessons learned - we need to look forwards with focus, drive and optimism.

    Let's support the core group of researchers and clinicians who are focusing on chronic SCI - and encourage more to join this group! That is something we can do.
    Yeah, it is time to raise our expectations/goals and demand at the least a relentless pursuit of a cure.

    Quote Originally Posted by StemCells&AtomBombs View Post
    Where's the damn like button on this thing!
    I 2nd you on this.

  5. #65
    Man we are so pesimist, and I understand why. But pesimism seems the easy route to me, so I'm not taking that road. As a Quad, life is really hard, and most of the time feel extremly frustrated. But I rather be wrong in the end than living like there is no hope for us.

  6. #66
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Curt, kudos to what you have experienced and learned in your time with SCI. We should learn from these experiences to avoid history repeating itself.

    However, what we do have to acknowledge is that until very recently most of the basic science has been conducted in an acute animal setting. But now we have clinically relevant chronic animal model standards which are now form the basis pre-clinical work for real world cures. Yes, it's glacial and there still isnt enough collaboration, funding or focus on chronics but things are better than the picture you paint. For the sake of progress history cannot be used as a stick to beat the field with but rather lessons learned - we need to look forwards with focus, drive and optimism.

    Let's support the core group of researchers and clinicians who are focusing on chronic SCI - and encourage more to join this group! That is something we can do.
    "Where's the damn like button on this thing!"

    I second that thought StemCells&AtomBombs and to the moderators or who ever please add a "LIKE" option to CARE/CURE messagboard.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  7. #67
    Quote Originally Posted by ResidentBio View Post
    Man we are so pesimist, and I understand why. But pesimism seems the easy route to me, so I'm not taking that road. As a Quad, life is really hard, and most of the time feel extremly frustrated. But I rather be wrong in the end than living like there is no hope for us.
    coming to terms with what you see as reality is never easy. Im not saying give up but its hard to face what is staring you in the face a lot of times. I think if you look rationally at how things are going the odds are low for real change in our lives. and they are people trying to help but im not sure there concerned about our lives, probably more so the lives of those injured in the future.

  8. #68
    For those of you that dont have any hope for a cure, why are you reading a cure forum?

  9. #69
    I'm in the camp of optimism. I believe we will have a viable therapy within 3 yrs, by 2016. I dont believe we will have a 100% "cure". I do believe Dr Youngs statement that one day there will be a therapy that restores enough that a stranger that didnt know one would never know that one had been sci. Dr Young, Dr Silver, Dr. Sang-Ryong Jeon, Neuralstem, Inc, StemCells Inc, Dr Jesus Vaquero Crespo, Trials in Brazil(*) and quit a few other Doctors and labs are gaining valuable ground in the war against chronic paralysis due to sci.



    (*)http://www.correio24horas.com.br/not...elulas-tronco/
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  10. #70
    Quote Originally Posted by Barrington314mx View Post
    For those of you that dont have any hope for a cure, why are you reading a cure forum?
    LIKE
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

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