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

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    #46
    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

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      #47
      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?

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        #48
        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.

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          #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).....

          -Hoc non pereo habebo fortior me

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            #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.

            Comment


              #51
              Originally posted by anban View Post
              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?
              i know its a small reason but sometimes im glad i don't live in the US with your lack of medicare provisions for the poor or for all your people regardless of income status. Payment is made at the end of year taxes of 1.5% of gross income from all tax payers.

              and no were the ones that arent broke.

              Comment


                #52
                Originally posted by brucec View Post
                Since 1978, always heard within 5 years since then
                I remember in 1978 asking a doctor about cure research. Remember exactly where I was at GF Strong when he answered: "Research. There is no research being done. Nerve cells cannot regenerate." I sat there stunned.

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                  #53
                  I've gotta be honest here. I really don't see that things are all that much different from the year 1981 when I was injured, mainly just much shorter rehab and much more expensive health care, that's about it.

                  I remember the only time in the hospital with my original rehab I burst out crying was when they wheeled me into a high tech imaging room. I lay there on my back looking all around me at the fancy electronics, meters, flashing lights. I was thinking all this technology (mind you this was nearly 32 years ago) and I can't be cured now? I thought heck I'll never be cured. Plus it did not help either that I had a very negitive Dr. who said you will in all probability spend the rest of your life in a wheelchair. Looking back on it, I had a lot of respect for this guy, he knew what he was talking about, a guy name Dr. Murry Freed at B.U medical center which was state of the art at that time. I'm sure he is deceased now, he was old then. I thought it was modern times then at that time having lived through 60's and 70's and having been a engineering major in college at the time and seeing all kinds of new technologies. Now here we are in what I'd call ultra modern times (I actually never figured I'd still be alive in the year 2012) and like I said, things remain virtually the same. Sure you have a lot people like Reynolds, Macdonald (what ever happened to him anyway?) and other researchers talking fancy talk, but it's all just talk. Not much to really back up what they are saying. Nothing ever seems to really help out for even small amounts of return. The human body has that powerful of a immune system to fight off whatever you throw at it. The human spinal cord just does not want to regenerate, I don't care what they say.
                  Last edited by Curt Leatherbee; 18 Oct 2012, 12:39 AM.
                  "Life is about how you
                  respond to not only the
                  challenges you're dealt but
                  the challenges you seek...If
                  you have no goals, no
                  mountains to climb, your
                  soul dies".~Liz Fordred

                  Comment


                    #54
                    Originally posted by anban View Post
                    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?
                    Its shameful isnt it. I quit doing free screenings for things because this was the case. Telling people yes you need a hearing aid but it will be 500 to 1000 dollars was depressing. Who knew hearing wasnt medically necessary, but a luxury. No a cure wont be for everyone.
                    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


                    Sometimes it is easier to widen doors than it is to open minds.

                    Comment


                      #55
                      Cure would be great, but I don't see it happening for another 20 years minimum. Probably 50. They are just throwing stuff at the wall now to see if it's safe. That's 10 years of trials easy.

                      In the time being, I'd just like to sit in my chair straight and not have major stiffness all the time. Plus a bunch of other stuff.
                      www.myquadriplegia.com

                      Comment


                        #56
                        Wow, things really do seem hopeless... listening to these stories how can anyone wonder why fund raising is so lack luster? I mean for the long time injured there is much discouragement.

                        Comment


                          #57
                          I for one have alot of hope and faith in what Wise Young is bring to the table. No i dont think it will be a "CURE", but ill take what I am hearing. Cant wait to see the final full results of the china trial.
                          I think ill be learning chinese in the time being. This therapy will likely be available there before here.

                          Comment


                            #58
                            Originally posted by Curt Leatherbee View Post
                            I've gotta be honest here. I really don't see that things are all that much different from the year 1981 when I was injured, mainly just much shorter rehab and much more expensive health care, that's about it.

                            I remember the only time in the hospital with my original rehab I burst out crying was when they wheeled me into a high tech imaging room. I lay there on my back looking all around me at the fancy electronics, meters, flashing lights. I was thinking all this technology (mind you this was nearly 32 years ago) and I can't be cured now? I thought heck I'll never be cured. Plus it did not help either that I had a very negitive Dr. who said you will in all probability spend the rest of your life in a wheelchair. Looking back on it, I had a lot of respect for this guy, he knew what he was talking about, a guy name Dr. Murry Freed at B.U medical center which was state of the art at that time. I'm sure he is deceased now, he was old then. I thought it was modern times then at that time having lived through 60's and 70's and having been a engineering major in college at the time and seeing all kinds of new technologies. Now here we are in what I'd call ultra modern times (I actually never figured I'd still be alive in the year 2012) and like I said, things remain virtually the same. Sure you have a lot people like Reynolds, Macdonald (what ever happened to him anyway?) and other researchers talking fancy talk, but it's all just talk. Not much to really back up what they are saying. Nothing ever seems to really help out for even small amounts of return. The human body has that powerful of a immune system to fight off whatever you throw at it. The human spinal cord just does not want to regenerate, I don't care what they say.
                            Great post
                            Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
                            CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

                            Comment


                              #59
                              I hate to sound so negitive especially for all you younger people, but it's just such a complex thing. I was trying to defy my Doctor back then in 1981 saying "I will walk, you will see" I was wheeling down the hospital halls with magnets taped to my back around the injury site thinking I was onto something and then trying to force myself to walk with long leg braces on the parallel bars. I was trying everything I could possibly think of, I was desperate.

                              I sure do hope Dr. Youngs trial results show something, anything!!! that is about my only glimmer of hope at this point. The rest of the stuff it seems like there is always crazy reasons why they don't work out and then they are quickly shelved and forgotten.
                              "Life is about how you
                              respond to not only the
                              challenges you're dealt but
                              the challenges you seek...If
                              you have no goals, no
                              mountains to climb, your
                              soul dies".~Liz Fordred

                              Comment


                                #60
                                Originally posted by Eric.S View Post
                                Wow, things really do seem hopeless... listening to these stories how can anyone wonder why fund raising is so lack luster? I mean for the long time injured there is much discouragement.
                                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.
                                "Life is about how you
                                respond to not only the
                                challenges you're dealt but
                                the challenges you seek...If
                                you have no goals, no
                                mountains to climb, your
                                soul dies".~Liz Fordred

                                Comment

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