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

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    #31
    Originally posted by anban View Post
    To be honest, I hate hearing the word "cure". You cannot cure this. I think you can definitely get "recovery". As to how long... I honestly don't think about it. I used to, especially during the first couple of years, but now living life has definitely gotten in the way. And that is not a bad thing. There are people who are able to be active in the progress of the research, raising money, advocating, et cetera. To those people, I applaud you. I hope you are the first to be able to have treatments. As for me, I guess I subscribe to the "life is what you make it". Years down the road, if I'm able to get some type of treatment, I will be ecstatic. But I do think there are other people that need it more than me.
    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 love this post. It's exactly how I feel.

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      #32
      [QUOTE=khmorgan;1597696]See https://www.carecure.net/forum/showp...7586&postcount=

      Where did you find this ?

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        #33
        Originally posted by nonoise View Post
        I'm not SCI, but got interested in this thread because you are talking about a cure. And then I learn that there are actually clinical trials going on. You as a group have an advantage over my condition in your numbers. My paralysis is rare, only a few research doctors have any interest and at the present time they are only looking to identify genotypes. Most of "us" even have trouble getting diagnosed. After a lifelong series of paralysis attacks my quads gave out such that I cannot walk and the rest of my muscles continue to weaken. The official talk of a cure is accepted as a fantasy. Maintenance of existing is the best any of us can really hope for.

        Consider yourselves extremely fortunate there is so much interest in seeking a cure and keep yourselves fit so that when your time comes you'll be ready for it.
        Thanks, nonoise, you are a brave man and we are fortunate you joined us.

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          #34
          Originally posted by micah_d View Post
          ummmm. . . yeah i do. why wouldn't they cover it?
          My friend's medicaid pays for his enemeez, not my medicare.

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            #35
            I'm sure they will pay for it, would be cheaper then paying for a lifetime of care.

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              #36
              How will it be paid for?

              Why don't we cross that imaginary bridge when/if we get there.

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                #37
                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?
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                  #38
                  Wise has already mentioned here that we should tone down our expectations ! so don't expect any miracles !

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                    #39
                    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.
                    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

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                      #40
                      Originally posted by ECUrach85 View Post
                      I'm 27 so I'm thinking they gotta do something within 30 years right? And by cure I mean recovery.
                      Careful with bargaining like that. I was disappointed when I hit the 20yr anniversary mark and even more so when I hit 25yrs.
                      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

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                        #41
                        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 Oct 2012, 9:42 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

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

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                            #43
                            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."

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                              #44
                              Originally posted by allenstevens View Post
                              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?

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                                #45
                                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.

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