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Thread: What does, "It's not about a cure. It's about quality of life." mean?

  1. #41
    Quote Originally Posted by Patrick Madsen View Post
    I did my rehab in Vancouver, B.C.. None of us were brainwashed into liking our disability. We were taught that a cure was not happening presently and would be years and years off, if any, so maximize your abilities and get on with life. I would rather be told the truth than have some rainbowed view that in 5 years, 7 years I'd be up walking again. I wonder how many out there are languishing at home wishing and not doing anything to be ready if there is a cure.

    How many of you out there that aren't "brainwashed" are spending time in the gym, watching your diets and getting ready for the cure when it comes. Do you think they are going to choose those that aren't motivated enough to even be in shape for the treatment and rehab after. It's been 41 years since they told me I would never walk and there would be no cure in my lifetime. I feel for me the time has passed for hope but I still work out and live my life in preparation in case there is one.

    We have been told for the past 35 years there would be a cure in 5 to 7 years and are still being told that. After a while it gets rather redundant. Those who put down the research and advances we've made in quality of life issues for SCI rather than into a cure were not around when our lifespan was measured in months for quads and a few years for paras. Ask guys like SCI 59 1/2 what it was like back then.

    Perhaps a cure will happen in the next few years; in the meantime, I'll take anything and any advance in treatments to keep me healthy enough for when the time comes. Even if it means being brainwashed by the great Canadian North in accepting my disability til the time comes my way.

    It's the ones who complain about no cure and put down others for getting on with life who are complacent. I get the respect for who I am and what I've done is because of me, not my disability. If my disability helps others realize their potential then so be it.
    I was told the same thing in rehab. Make use of what you have. No neurologist or physical therapist ever told me that a cure was 5-10 years away. The only doctor that I have ever seen say that is Dr. Young. A true cure will not happen in my lifetime and I'm 27. The spinal cord is just too complex to rewire.

    With that said, treatments that can restore function are not only possible, but imminent. Realistically, it is more likely to be computer and electrically based.
    When dealing with scarce funds, which we all agree SCI money is scarce, needs to be spent in best way possible. I don't know what exactly you mean by quality of life research. It is a general term. I feel that the quality of life (not aimed at restoring lost function) research is in its maturity. Every dollar spent will provide fewer benefits compared to every dollar spent on restoring function. 50 years ago, that was not the case. But we are not in the 1960's anymore. You must continually re-assess the current situation and be forward-looking.

    Restoration of function is the last hurdle in extending SCI life expectancy. One cannot prevent death from UTI sepsis until SCI no longer need to stick foreign objects into their urinary tracts 7 times a day. Or prevent deadly blood clots until SCI can move their legs. So restoration of function (mechanical or biological) should be our goal. Who knows, maybe there might be a huge breakthrough that can really improve the "quality of life" of a cripple... being able to move and feel.

    There is a difference between accepting the reality of disability and being complacent with it and having no desire to be cured. I'm embarrassed when SCI act like nothing is wrong and everything is all smiles...a cure would not be important. I have even heard / seen several cripples say that they wouldn't even want a cure if offered! Those people tend to be from Canada. In Canada (& the UK) there seems to be a culture where SCI is not seen as a negative. It's like a club. People are content living the rest of their lives as cripples. I am generalizing! There are many individuals from those countries who do not think that way and plenty in the U.S. who do think that way. When the RHF spends no money on chronic cure, Canadians for the most part do not care. It is of no importance to them. This thread about "Its not about cure but quality of life" is the same thing.

    SCI is not ok. It is nothing to smile about. It is 100% negative. Everyone who has a substantial SCI has a "quality of life" substantially less than an AB. Even a low paraplegic dies on average 12 years earlier than an AB. Those years while alive are terrible as compared to a life as an AB. It is hell to not be able to walk! It is hell not being able to piss or shit on your own. It is hell to not be able to feel your dick. It?s embarrassing to hear a SCI say otherwise. They look like damn fools. Able bodied individuals are not stupid enough to believe them either.

    If a prisoner said prison is not that bad and didn't care if he ever got out, I would look at him as if he were crazy. It's the same with SCI.
    Last edited by Nowhere Man; 10-08-2014 at 09:39 PM.

  2. #42
    Quote Originally Posted by Nowhere Man View Post
    ...It is hell to not be able to walk! It is hell not being able to piss or shit on your own. It is hell to not be able to feel your dick. It?s embarrassing to hear a SCI say otherwise. They look like damn fools. Able bodied individuals are not stupid enough to believe them either...
    Yes they are. Good god, they are...

  3. #43
    Quote Originally Posted by tomsonite View Post
    Yes they are. Good god, they are...
    Are you saying that AB's think that paralysis is not that bad? Walking is overrated?

  4. #44
    Quote Originally Posted by JamesMcM View Post
    Dennis, I will be surprised if they even respond.
    Hi James. After seeing this I thought to check my junk mail. Sometimes Google is so Good at eliminating spam that it kills other stuff, too. They Did respond the very next day. It's a very long response and on first read a very thoughtful one at that. Like I said it's very long and I'd like to read it a few more times to digest it and see if there is anymore to be done. Should have it out tomorrow at the latest.
    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

  5. #45
    Quote Originally Posted by c473s View Post
    I don't think I have ever run across an individual nor an organization opposed to a cure. I include those organizations here in the States that advocate for care. I believe they are of the opinion people need care, equipment, opportunities until there is a cure. It is about some semblance of quality of life. Maybe in Italy it is not like this.
    Never met someone that thinks SCI will never be cured and therefore money spent to find a cure are wasted?

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  6. #46
    Quote Originally Posted by t8burst View Post
    Yep, I agree. Maybe for some of our younger friends (I just turned 50). Do the math, there is no "cure" in clinical trials now, so that says to me we are at least 20 years from anything. As much as people seem to think science is advanced, look at cancer. We still use extremely primitive methods such as chemotherapy and radiation to treat cancer after decades of research and orders of magnitude more funding.
    You're telling us cancer treatment hasn't developed?
    http://www.cancerresearchuk.org/canc...ommon-cancers/

    There are treatments in trials showing improvements. I'm interested in any kind of improvement. Also the research and knowledge today of the CNS is very different compared to 30 years ago.

    20 years? Is that number based on your grand experience of medical research?
    Debating on CareCure is like participating in the special-olympics. You may win, but you're still disabled.

  7. #47
    I said I had never met anybody with an SCI that was opposed to "cure". That is very different from how you reworded what I said.

    Quote Originally Posted by paolocipolla View Post
    Never met someone that thinks SCI will never be cured and therefore money spent to find a cure are wasted?

    Paolo

  8. #48
    Quote Originally Posted by c473s View Post
    I said I had never met anybody with an SCI that was opposed to "cure". That is very different from how you reworded what I said.
    OK, there is for sure a language barrier here as I don't see a significant difference between the meaning of the words you used and the words I have used.
    It could also be that in my previous post it wasn't very clear what I meant.
    No big deal for me.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  9. #49
    Quote Originally Posted by Nowhere Man View Post
    Are you saying that AB's think that paralysis is not that bad? Walking is overrated?
    No. You said that when people with SCI smile and say life is good, AB people are not dumb enough to believe them. I am saying that plenty of AB people are dumb enough to believe people with SCIs who say life is peachy and a cure is overrated. For every SCI person who says they don't need a cure, or life is just as good as it was before their injury or better (and I have heard people say their lives are better), there even more AB people who believe them and respond with a "Good for you " attitude.

  10. #50
    PS I'll bet my car that 99% of the AB population that doesn't have some personal connection to SCI does not realize that SCI is more than just not walking. Almost every single person thinks that if you injure your spinal cord, you can't move and use a wheelchair to get around, and that is all that you deal with. Last year, Travis Roy gave the keynote speech at W2W in which he gave very detailed descriptions on everything that life with SCI entails. It was devastating to me when he requested his full speech not be made available to the public.

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