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If you had the funds...would you opt for any current therapies?

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  • #46
    Originally posted by lunasicc42 View Post
    What was your own reason for not doing it?
    I don't have a reason for not doing it

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    • #47
      It was a joke. He said "here also is a visual component to this if you are not aware of that"

      and I said "I don't see that".

      Originally posted by tumbleweeds View Post
      No? I got the following today from Miami Project:

      "We are currently recruiting people with SCI at C5 to C7 to explore various issues about muscle function in relation to age (age at SCI, SCI duration, current age).

      There are various surveys in the literature completed by individuals with SCI and they are reporting new muscle dysfunction (weakness, fatigue) at 45-50 years and we do not know why. This is earlier than seen for natural aging. Our experiments are looking at the underlying biology to understand what is happening so we can then design ways to try to reduce the deficits."

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      • #48
        Sorry, but did you ever learn and see how to do all of these things when you were a child and growing up uninjured? Data those eyes are sending, better be correct and correct at the correct time. I have regenerated tons of things, movement and strength all the way to toes in each foot. I will say I wonder how much strength still needs be accomplished. Would seriously ask therapist if I can get into pool. stand and leave go with what I was holding to maintain upright. This would then provide me where else I need to work. Kist getting sensation below hip all started when I tried doing things with eyes closed. With my eyes open, I know I never visually leaned what I needed to do with injured spinal cord. Doctor on this site said eyes do send data to brain fractional amount of time before actual movement.

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        • #49
          To answer the original question, 'no' would be my answer because I don't think there is anything viable out there.

          However if there was something out there I'd sell everything I owned to access the treatment - hell I'd even sell a kidney or lung lol.

          To take things a step further if someone offered a cure however it also came with a significant risk of death I'd still go for it.

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          • #50
            Would you take that same risk if it came with a significant risk of further impairment rather than death?

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            • #51
              I imagine those two risks would come together, unavoidably there would be a chance of ending with one or the other if it's a invasive surgery which is most likely necessary

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              • #52
                I would make sure in the event the outcome was worse I would have access to a peaceful death. I wish I had that now.

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                • #53
                  I hear you D. but how would you ensure access to a peaceful death when it's not available unless you live in Oregon. It's like us saying before our injuries that we would rather die than be like it is. How's that going? Anyone willing to help with that?

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                  • #54
                    No one is helping.

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                    • #55
                      Canada's finally not being a prick about it.

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                      • #56
                        Originally posted by Patrick Madsen View Post
                        Would you take that same risk if it came with a significant risk of further impairment rather than death?
                        I know I wouldn't. My biggest fear is getting treatment and getting more nerve pain. I'll tell ya right now...if it gets worse I'm peaking out
                        Www.rachellefriedman.com

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                        • #57
                          Originally posted by Patrick Madsen View Post
                          Would you take that same risk if it came with a significant risk of further impairment rather than death?
                          Great question. The answer for me would be 'no'.

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                          • #58
                            How do you evaluate a place like the Stem Cell Institute in Panama which claims to be affiliated with the Johns Hopkins hospital and posts SCI patient videos (Seem to be US citizens) claiming having gotten major improvements in their conditions based on stem cell therapy received there? one was able to walk after not feeling anything or being able to move anything below the level of injury.

                            IF someone was to follow that treatment, what would the risk be and would that prevent them from having a different type of treatment if that was to become available in the near future? (I am not talking about participating in clinical trials)

                            I am 57 years old, 2 years post injury T3/T4 incomplete but Asia A, my impression is the longer I wait to try something the less there will be to recover, it is hard to deal with this sort of dilemma

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                            • #59
                              I don't see much of a dilemma. If a therapy has not been proven to be effective in a series of clinical trials, it is not worth trying. More importantly, it can be very dangerous. Most times, these sham clinics can not provide proof that the cells they use are good manufacturing practices (GMP) certified. You have no idea what they are putting in you.

                              In Dr. Young's ChinaSCINet 102b KM: UCBMC Transplant with Rehabilitation Trial, the average time injured of the 20 patients was 7 years, up to 17. I understand there wasn't much difference in their recovery. 75% recovered a great deal, and that excludes 2 that had to drop out due to pre-trial leg fractures.

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                              • #60
                                Originally posted by Jim View Post
                                I don't see much of a dilemma. If a therapy has not been proven to be effective in a series of clinical trials, it is not worth trying. More importantly, it can be very dangerous. Most times, these sham clinics can not provide proof that the cells they use are good manufacturing practices (GMP) certified. You have no idea what they are putting in you.

                                In Dr. Young's ChinaSCINet 102b KM: UCBMC Transplant with Rehabilitation Trial, the average time injured of the 20 patients was 7 years, up to 17. I understand there wasn't much difference in their recovery. 75% recovered a great deal, and that excludes 2 that had to drop out due to pre-trial leg fractures.
                                Thank you for the feedback Jim.

                                Alan

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