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  • The need for and likelihood of a cure of spinal cord injury

    The need for and likelihood of a cure of spinal cord injury

    These two related issues seem to be a favorite one amongst members of the forum and I thought that it might be useful to summarize my views on it here so that they do not have to be repeated over and over again.

    Need for a Cure of Spinal Cord Injury

    There are some people who claim that we do not need a cure for spinal cord injury and, in fact, some people with spinal cord who claim that they would not take advantage of a cure if it became available. When I first encountered this attitude, I was shocked and spent much time trying to understand it. As best as I can, this attitude is based on two philosophies. The first is that disability is a function of the environment and not a function of the person. For example, President Franklin Delano Roosevelt was impaired by polio but not disabled in the sense that he was a very able President. He was able to do so because he had people to carry him around and do things for him. Many people who oppose the cure believe that society has not invested adequately enough into improving the environment to minimize disability and have focussed too much attention on cure research. Second, people feel that the disability community should not be striving for "pie-in-the-sky" goals but rather focus on what is here and now, that would improve the lives of people with disabilities. They also feel that many people who focus on hope for cure are making themselves and others around them unhappy by wanting a cure instead of accepting their condition.

    We must of course recognize that disability differs considerably amongst people with spinal cord injury. Somebody with paraplegia, for example, has significantly less disability than a person who is a high tetraplegic. Likewise, somebody with a progressive condition is much less likely to accept the condition. Finally, somebody who has grown up with disability and has never known a life without it may be more willing to accept the condition. So, somebody with paraplegia or a person who is walking after spinal cord injury perhaps should not be speaking for somebody who is paralyzed from nose down. Some conditions are more acceptable than others. Some conditions are simply unacceptable in any circumstances and a cure would be very desirable. Finally, I have found that most people who oppose cure research for spinal cord injury generally drop their opposition when I ask them whether they want their children to have the same disability as they do. They usually say no. Note, however, that there are some people who feel that certain forms of disability may be desirable. For example, some members of the deaf community believe that their children should be deaf.

    The philosophy that hope for a cure prevents or delays acceptance and therefore causes unhappiness has some basis in evidence. Most people with spinal cord injury are most unhappy about their loss during the first months or years after injury and acceptance of their condition correlates with greater life satisfaction and "happiness". However, I don't believe that hope for cure necessarily leads to greater unhappiness and life satisfaction. In fact, for many people, hope for a cure is a driving force in their life and gives them great satisfaction. Finally, perhaps the most powerful argument against this philosophy is that hope gives people the energy and drive to recover. I believe that people who have no hope and deep pessimism concerning the possibility of recovery tend to try less and recover less. Whether or not one accepts the disability or condition, it is important that the person recovers as much as possible. I have the impression that people in some cultures tend to recover more than people in other cultures. For example, in India, people with spinal cord injury are highly motivated to recover because people with spinal cord injury who do not recover tend to die.

    In 1995, a group of people who opposed cure advocacy circulated an email comparing Christopher Reeve to Jack Kervorkian, the man who advocated physician-assisted euthanasia. This shocking comparison was based on the claim that society wants to "kill us or cure us". In other words, they are saying the cure advocates want to get rid of disability instead of dealing with the problem and caring for people with disability. They point out that this devalues people who have disabilities. They do not want society to feel sorry for people with disability but would rather that the environment be changed so that it would enable people with disabilities to do more. This sentiment was a powerful component of the American Disability Act which mandates society to do everything that is reasonable to render the working environment less disabling to people with disabilities. Finally, many who oppose cures believe that a cure will never be achieved, at least within their lifetimes.

    In the end, all the above arguments against a cure fail because spinal cord injury is not good. It unquestionably reduces quality of life, impoverishes people, and imposes a terrible economic and social burden for families who have to do the caregiving. If we can cure spinal cord injury, we have an ethical obligation to do, not only for people who are disabled today but for people who will be injured in the future, i.e. our children. The cost of a cure is much lower than the cost of care. Whether the cure takes place in our lifetime is irrelevant. In fact, the argument that we should not invest in a cure because it would not come in time to help us now is ultimately a very selfish argument. We have an obligation to cure spinal cord injury not only for the present generation but for future generations.

    The Possibility for a Cure of Spinal Cord Injury

    If a cure for spinal cord injury were impossible, I would agree that we should not be expending precious resources or energy on the quest. Indeed, until quite recently, most doctors and scientists believe that a cure was not possible for spinal cord injury. When I first got into the field of spinal cord injury, friends and colleagues attempted to dissuade me from entering the field, saying that I was throwing my career away on something that was not likely to happen within my life. This pessimism essentially prevented any meaningful spinal cord injury research from happening for much of human history. In the 1980's, neurosurgeons were so pessimistic about the possibility of recovery from spinal cord injury that many did not believe that the spinal cord should be decompressed if a person came into the hospital with no motor or sensory function below the injury site.

    In the past ten years, a majority of scientists and many clinicians have come to believe that therapies that restore function after spinal cord injury is not only possible but will happen within our life time. The basis of this belief comes from three discoveries. First, many studies have now shown that the mammalian spinal cord can regenerate under certain circumstances. Many therapies have been shown to regenerate the spinal cords of animals. Second, it is not necessary to regrow the whole spinal cord to restore function. In fact, much animal and clinical data support that concept that preserving or regenerating 10% of the spinal cord can result in substantial recovery, including recovery of walking. Third, recovery is the rule rather than the exception in spinal cord injury. Even people with so-called "complete" spinal cord injuries tend to recover some function while people with "incomplete" spinal cord injuries often recovered walking, i.e. the so-called walking quads or walking paras.

    Many of the early therapies of the spinal cord were not practical and were not robust. However, this is the way of medicine. Therapies are seldom perfect and cured everybody. Rather, it is important to think if therapies in generations. We are currently testing first generation therapies in clinical trials. These include treatments such as 4-aminopyridine, transplantation of various types of cells, and growth factors. As one might expect, the first generation therapies are producing some recovery in some people. The second generation therapies are or will soon in in clinical trials. These therapies should produce more recovery in more people. Finally, third generation therapies probably will involve combinations of the best therapies. These should produce substantial recovery in most people. In my opinion, the third generation therapies will be the first therapies that will be called "cures". The combination therapies that work best today are those that involve cell transplants, coupled with growth factors and other factors that block axonal growth inhibition.

    In the end, I hope that scientists be allowed to pursue all avenues of research for the cure of spinal cord injury and active. We simply do not know enough to predict scientifically whether embryonic stems would be better or worse than adult stems, and certainly not enough to say that that embryonic stem cells should be banned.

  • #2
    Very well said - thank you Dr. Young.

    Deb
    "Save the last dance for me!"

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    • #3
      That was very interesting and helpful information Dr. Young. Thanks again.

      What one man can do another can do
      A good friend is someone who will come to bail you out of jail. A TRUE friend is the guy sitting next to you behind the same set of bars saying, "boy we sure f*cked up this time huh?"

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      • #4
        Dr. Young

        I agree with most of what your saying BUT... some people as myself who are walking paras are not opposed to the cure but would reject the offer based on the fact you may come out of the operation with less function than you went in with.

        There is nothing that is 100% ( death?) so it is more the fear of loss than the opposition to accepting a cure. If there is no return then there is the attitude of what do you have to lose but those with return do have something to lose.

        My injury is a L-1 burst but I function as a L-4, L-5. So I would hate to "walk" into the operation and "wheel" out.

        I think once the "cure" is proven there will be a greater buy-in by both the "feared" crowd like myself and the "life can't get no better" crowd like John Hockenberry.

        So please don't paint all the people that are not in the line up for today's cure technology with the same brush.

        Jim

        PS - I like the comment "do you want your kids to have this disability". I will use that for all nay sayers.

        Comment


        • #5
          So, somebody with paraplegia or a person who is walking after spinal cord injury perhaps should not be speaking for somebody who is paralyzed from nose down. Some conditions are more acceptable than others. Some conditions are simply unacceptable in any circumstances and a cure would be very desirable.
          Thank you Dr. Young!

          "As our cause is new, so must we think anew and act anew" - Lincoln

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          • #6
            Faye I happen to love you and I hope you don't take this the wrong way. But lets assume that there was no such thing as quads and the most severe injury was that of a para-Is that not bad enough as it is? If there are things that can be done for paras now should they not be done? Also, I am not happy with being asked not to start a cure vs care thread and then find this thread. Just because a quad may have a more severe injury than a para should not minimize what a para has to go through, that is obsurd. The biggest problem I see is that the community catagorizes itself by injury level and care vs cure when the best thing would be to all unite and support each other. I am not the enemy. Paras keep your mouth shut!!!!!!!!!
            All forms of sci suck we need to unite not catagorize. Instead of polarising and having a pecking order we need to come together!!!!!!!!
            [This message was edited by BigB on 06-17-04 at 05:24 PM.]

            [This message was edited by BigB on 06-17-04 at 05:30 PM.]

            [This message was edited by BigB on 06-17-04 at 05:32 PM.]

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            • #7
              second generation hasnt started yet, but third generation is on second generation tail. third generation is closer to second generation then was second generation to first.

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              • #8
                I am amazed at a site dedicated to people with sci that more than joins them together in a common goal creates an atomoshere of polarization. what gives here? Isn't it bad enough to be "just" a para. Should I as a parent of a para sit back and say hey my son got it easy? Before any of you were confronted with sci you probably thought having a toothache sucked. But, now paras have no rights because there is something called quads.

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                • #9
                  BigB, while I am classified as a C6 Quad, I would never think that a Para "had it better" than me. Paralysis sucks no matter what your level.

                  I can understand your anger at your son's paralysis but geez, give us a break, we're not the enemy either.

                  Ronnie

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                  • #10
                    Enough already. How many times does this argument have to be rehashed?

                    First, as we know there are many folks with SCI who are BOTH quadraplegic and paraplegic who do not support cure research. We disagree with them. Ed Roberts, Judy Humann, Debbie Kaplan, etc. all live(ed) with high level neurological disorders. All of them have advocated care issues over cure issues. They would take great exception to Wise's statements. That's o.k. We take great exception to their positions. This makes them an opponent to be dealt with. Not turned into villans and made into enemies.

                    The general population, no matter how ignorant of SCI, needs to take one look at ANYONE in a chair . . . and know within themselves there is no way they want to trade places with us. No matter how much someone may try to convince them otherwise.

                    Second, severity of disability is relative. I'm a c5-6,7 quad. I do many things that T-12 paras do not do. Often because they are traumatized with secondary disabilities stemming from the onset of SCI such as clinical depression, alcolholism, drug addiction, etc.

                    Paraplegia and quadraplegia are more often than not equally devastating economically and socially. To argue one is worse or better is quite frankly just plainly absurd. We each deal with our conditions individually.

                    Again, ain't nobody standing line to trade places with us no matter how happy we may look.

                    Third, nobody wants their kid/grandkid/neices/or nephews to grow up and live the exciting life of a quad or a para. It doesn't take a whole lot to convince folks that a cure sure is a good idea.

                    The single biggest obstacle that faces us is one thing.. . . .

                    People still do not believe it is possible.

                    I've been asked point blank by funders: Is a cure really feasible or are the researchers pissing in the wind and holding out false hope in order to raise funds to support their work?

                    In the midst of a capital raising campaign for clinical trials this is item #1 on all donors minds.

                    Every time I tell a potential donor of the therapies waiting in the pipeline for funding they pull out 10-12 articles by several damn researchers all stating: "This is an important step but it will be at least 10-20 years before we're ready for applications in humans." They've heard thesestatements since the mid-70's folks.

                    The old dogma that spinal cord injury can't be cured continues to haunt us. Despite MP's announcement, Huang's efforts, and Lima's efforts.

                    If we can get researchers on one page agreeing that it can be done . . . the dogmna dies. When the dogma dies and people believe . . then the whole care vs cure thing will die with it.

                    Right now . . . too many people believe that we're advocating on false hope, and as a result money that could go to make peoples lives better today is being wasted by being thrown into a black hole.

                    We're starting to overcome this problem. But we have a long way to go. You need to look no further than the thread that Wise started regarding thedefinition of a cure.

                    What we do in life echoes in eternity. Maximus - Gladiator
                    What we do in life echoes in eternity. Maximus - Gladiator

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                    • #11
                      I think Wise was only trying to say that a quad would be more likely to be an advocate of finding a cure, due to the fact that both quads and paras have to endure challenges, quads just having more limitations.

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                      • #12
                        "First, as we know there are many folks with SCI who are BOTH quadraplegic and paraplegic who do not support cure research. We disagree with them. Ed Roberts, Judy Humann, Debbie Kaplan, etc. all live(ed) with high level neurological disorders. All of them have advocated care issues over cure issues. They would take great exception to Wise's statements. That's o.k. We take great exception to their positions. This makes them an opponent to be dealt with. Not turned into villans and made into enemies." Larwatson

                        Some good points larwatson, however you left out the majority of people who support both cure and care------see I'm right, this site you are one or the other. I happen to like supporting cure and care-there is no place for me here.....thats sad

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                        • #13
                          I support both, but I focus moreso on Cure than Care.

                          -Steven
                          ...picture yourself in a boat on a river with tangerine trees and marmalade skies
                          ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

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                          • #14
                            if i was a para, my life would be 1 million times better. i cant imagine all the new opportunities would open up to me as a para. but would i be satisfied as a para? NO, NEVER, NOT WITH ALL THE MONEY IN THE WORLD.

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                            • #15
                              Originally posted by BigB:


                              Some good points larwatson, however you left out the majority of people who support both cure and care------see I'm right, this site you are one or the other. I happen to like supporting cure and care-there is no place for me here.....thats sad
                              Actually Bob, there is a place for you. Most folks on the site are both cureandcare supporters. Heck forself preservation purposes they have to be. The problem is that too often folks break down into enemy camps because of the volatility of thedebate on both sides.

                              Bottom line. Cure research has bettered the health care for folks with SCI. Research has led to better bowel and bladder management techniques, fertility, osteoperosis mangement, exeercise, and diet to name only a few. As such, The quality of life for people with paralysis today is much better than it was 25 years ago.

                              The majority of us understand that the pots of money for care and cure issues often come from very separate sources that would not be available to folks with SCI but for their specific uses. Department of Ed grants aren't going to be used to support a human clinical trial. NIH grants aren't going to be avaiable to support outdoor rec programs.

                              We need both. I and many other like you support both.

                              We're always going to have ideologues on both sides. And that is not necessarily a bad thing.

                              What we do in life echoes in eternity. Maximus - Gladiator
                              What we do in life echoes in eternity. Maximus - Gladiator

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