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

  1. #41
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by StemCells&AtomBombs View Post
    Not because I doubt what people are saying about being told 'in five years' in the 80s amd 90s, but i would love to hear who said that and what they were working on to be able to make such a claim.
    I think it would be fascinating to see who made these claims and what they are doing now. Almost like a history class for those of us more newly injured.
    A doctor in emerge had read it in some journal ... told me about The Miami Project on July 29th 1985 and that I would be running again within 5 years. I was 12 so I don't know any more. I was still in emerge being evaluated when he told me that.
    Last edited by lynnifer; 10-10-2012 at 09:42 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

  2. #42
    5 years = forever (Does that mean forever forever? No just forever) = we don't know when

  3. #43
    Senior Member Leo's Avatar
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    http://www.z2systems.com/np/clients/...8e14dm89106d90

    If your not signed up to get U2FP newsletter please do so

    in 2000 or so when i first came to cc, cure and recovery seemed like a quick 5 year no brainer, until i saw how many sci were working on it

    even today flipping through this thread look how many don't take the simple step of adding a link to justadollarplease or other groups working on it

    how long till it's here is on us
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  4. #44
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by allenstevens View Post
    Quote Originally Posted by khmorgan View Post
    Huh? You click on the link, that opens the post. Then in the upper right hand corner, you should see Thread: ChinaSCINet Update. Is that what you are asking?

  5. #45
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by anban View Post
    But when it does come... it will definitely be all about the money. You honestly think insurance, especially those people that only have Medicaid, is going to cover something like that? Not in my lifetime.
    I'm not sure that I agree. If you read Dr. Young's early posts, he and others believe a "cure" is a treatment that is affordable. What good would a $1,000,000 treatment be?

    Now, if you are living on Medicaid and SSDI, your friends and family may have to pitch in on some of the physical therapy.

    Try not to let the demons of despair rule your life. There really is hope.

  6. #46
    Quote Originally Posted by ECUrach85 View Post
    Thanks for the replies and sorry I haven't been on to look at this thread until now! But here's how I feel. I'm 27 so I'm thinking they gotta do something within 30 years right? And by cure I mean recovery. I doubt I'll ever ballroom dance again. I just want my damn hands back and maybe some feeling. I do worry that a cure or whatever you want to call it will cause more nerve pain. I'd rather sit here than have that get worse! I live my life as if It may happen but I was thinking more like 15yrs. 5 years in my mind seems out of the question. And what if wise doesn't get the results we all want to hear?
    I think you are doing all the right things. Have you looked further into school/employment? I just ask because I know some of my peers that were injured at the same time as me never did this and are still working at recovery...even going to the Amazon and doing therapies/eating plants thinking that is curing them.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  7. #47
    Senior Member anban's Avatar
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    Quote Originally Posted by khmorgan View Post
    I'm not sure that I agree. If you read Dr. Young's early posts, he and others believe a "cure" is a treatment that is affordable. What good would a $1,000,000 treatment be?

    Now, if you are living on Medicaid and SSDI, your friends and family may have to pitch in on some of the physical therapy.

    Try not to let the demons of despair rule your life. There really is hope.
    I'm not despairing, just realistic. I work as a Medicaid case manager. I see people on Medicaid and Medicare unable to get even dentures or glasses covered. More expensive or uncommon medications are not covered. Private insurances will most likely be on board...but with health care reform, who knows what will be paid for?

  8. #48
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    This is NOT intended negatively, so if sounds that way, I apologize first. I think it helps mentally to not put a timeframe on it. Matching your mental thoughts with physical ability may do wonders for you. I am doing a plan myself and have told myself I do not care if it happens tomorrow or the day I die. My focus is to hope I am making progress as minimal or large as it may be continually, Break it down to extrememly small processes that you know yoyu were capable before this happened and begin to try to do those. When I say small, I mean SMALL. Things like can you even move your upper body weight to the correct side in order to begin a step. If not, back up to what needs be done before that. If can, practice and get good at it and move to the next step. It may take forever and longer to do this, but you may give yourself a feeling of accomplishing something.

  9. #49
    I used to be an optimistic guy about cure/recovery/callitasyouwant, but after 10 years of this nightmare and some recent issues, I have to give up, resign, and admit the truth. Theres no hope for people like me, simply as that. Research is going on and growing up, things are getting better in terms of support and clinical trials, but we are far away from some treatment that can overcome the issues of a long term paralized body. Science has its own tempo, and in this time of history it is kidnapped by business, politics, and other external factors that are slowing it.

    As another member posted, even Wise has already mentioned here that we should tone down our expectations, and I donĀ“t know any other researcher more optimistic than him.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

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  10. #50
    Isildur, Wise is not a researcher, some sort of manager, his "optimism" is a feigned mask, he is not a good model. Hold your head high, the better times are coming.

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