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  • I think it is time to do no harm

    I know this will not be some peoples' idea of positive activism but as far as I am concerned, and how time concerns me, it is time.

    I am going from memory here but in the last year figures were available for Maryland there were 474 new spinal cord injuries. This does NOT count the 26 who were deemed dead at the scene from a SCI.

    Most studies cite a figure of suicide amongst those with a SCI at 10%. That is one in 10. In Maryland that would mean in that group injured in that last year, 47 will die by their own hand, overdoses, purposeful AD by heat stroke, sores or other lack of care the person has decided to forego so their life will end sooner.

    Without counting levels of injury, secondary conditions and lack of or sub standard care, 73 of those original injured 500 people have or will die due to their spinal cord injury.

    Thousands of neuroscientists, neurologists, neurosurgeons and scientists in the basic biological sciences will convene in San Diego in Novemeber for several days. These are the people who do the research, the surgery, the "management" of our bodies. And yet they refuse, their hospital administrators refuse, their IRBs refuse and their insurance people refuse to do surgery we ask for, therapies we will often offer to pay cash for and experimental proceures we are willing to pay our own lawyers to write up complete and absolute consent forms to whatever may happen afterwards to us.

    I think it is time that we all inform our doctors that we are not going to continue past whatever our own time or other limits are. You cannot threaten or mention suicide without a 72 hour observation period in most states so never, ever mention the word. Just say, in no uncertain terms, what your thoughts on your future are. If you are a person who lives by goals and time periods then say it that way. "I decided when I was injured I would do everything possible to deal with this and wait this amount of time for a cure. My limit is 10 years and my anniversary date is ____. What can you do for me by that date?" If you deal by exercising than tell your neuro by how much PT you've done, how much spent on home equipment, etc.

    And we need a turnout in San Diego outside the conference sites of people with spinal cord injuries. We need to get it across to the people who count with us that by doing nothing but pallitive care 73 out of 500 newly injured people WILL die. There is no longer, to my mind, a reason to use "first, do no harm" as an excuse to not honor the wishes of the person injured. Not a patient but a person.

    Wise, you often say that if one person dies it will set back research years if not a decade. We are already dying without intervention. How many therapies in pre-clinical studies now would have a death rate of 73 out of 500 in humans?

    If someone can see a flaw in my thinking I am more than willing to listen. But "first, do no harm" does not say "first, do nothing". And I am talking about an awareness campaign not a riot or a screaming match. We need to work together and the clinicians need to see US not abstract numbers and studies of subject 1a through 10a and 2a through 2b.

    Ideas? Thoughts? Critique?

    Sue

    #2
    Maybe the Fundraising Forum

    should be Fundraising & Activism.

    Remember Bill Mullin saying with terrorism like it is we won't need a cure or something to that effect? The country's focus was wholly turned to our nation's security in light of the 9/11 attacks. The anthrax attacks will keep the momentum in that direction. How little have we heard about the Condit/Leevy story or any other story? Getting our message across will be more difficult than ever. We probably need to turn up the heat just to maintain where we were pre-9/11.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~
    ~See you at the CareCure-used-to-be-paralyzed Reunion ~

    Comment


      #3
      A big Amen to your post Sue! I'm a slow thinker but will get back to ya. Lets keep this on the main burner.
      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."

      Comment


      • #4
        Jeff, Steven and I have worked together on many fund raising ideas and I have no problem with sharing this topic and idea between the two forums or moving it to his forum. I'm still working and will be, on this dinosaur Thinkpad until Nov 1st so I don't even have access to my moderator tools at the moment.

        BTW, I wrote the post after 3 hours in a meeting with the members of the Maryland SCI Research Board. We are working out all the details now so when the first money shows up January 15th we are ready to send out and accept grant applications. Planning a war takes less time!!

        I also did a bit of working with a few folks who may support increasing our fund amount. But without testing things on humans all the money in the world will not get us out of these chairs. We have a great board of people that includes a devil's advocate, a very experienced grant process person, a supportive chairman, Delegate Tod Sher, and a person with an SCI who insists that all grants show application potential. That would be me. We also have 3 of the best from both Johns Hopkins and the University of Maryland and a senator who began her professional life as a rehab nurse.

        Money is on the way and I think we will see more national fund raising. I like the idea of the FES bike across America. But it is now time to let the world's and especially America's surgeons and doctors know that they have to accept the 21st century because we will not accept less. Wise made a good point about Joseph Lister. Everyone should read a biography of Lister's life. Surgeons once boasted of the amount of old blood on their lab coats and reused unwashed and unsterilized surgical instuments. And it took years to convince many of the best surgeons in Britain to accept his FACTS on bacterial infection.

        I doubt I can make the San Diego meeting. My Mother In Law is ill and I think we'll be heading to Florida instead. Is there anyone in San Diego who can answer questions on access, hotels. press phone numbers and addresses, etc? Any injured celebraties out there willing to add a voice? This is short notice for this kind of thing but IT IS TIME.

        Sue P.

        Comment


          #5
          Sue, I agree wholeheartedly that we need to create a " sense of urgency " and be able to convey this to the research community and the public in general. We are dying a slow death. I personally don't believe I have 10 or 15 years to wait for "cure ", and I am lucky that I have better care than most probably.

          As a group, I believe our biggest problem is not a lack of leaders or good ideas, but a lack of focus as a group. Because of our injuries and our daily struggles, it is almost impossible to mobilize as a group.

          I believe our first goal must be to recruit and get the message out. I believe there are many people here, like yourself, who could inspire and lead others to change the rules of the game, but at present there are just not enough of a network to get the message out. Last time I looked, there were a little over 600 members to this site. We need that number to be 6000! Until we reach some kind of a critical mass, it will be tough to make a difference in my opinion.

          * how can we attract more SCI to this site? We need to try to set some reasonable goals (1000 members by January 1st) and go on a recruitment campaign.

          Comment


            #6
            Sue, I agree with you and am feeling frustrated as well. Wise.

            Comment


              #7
              SCI suicides

              I'd assume those 10% of SCI patients who commit suicide are paras and very low quads, meaning the number of suicides would be even higher if quads with no finger or hand function were also able to choose the option of suicide.
              Alan

              Proofread carefully to see if you any words out.

              Comment


                #8
                Sue,

                I hope your mother-in-law is well, but should you travel to Florida and have a layover in Charleston, let me know. [img]/forum/images/smilies/smile.gif[/img]

                -Steven
                ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

                Comment


                  #9
                  Suicide

                  Alan, I hate to have to tell you this, but in my experience there is virtually no one with an injury too high that they could not commit suicide if they truely choose this. A few examples:

                  I had a patient who had a C-5 SCI who deliberately drove her power wheelchair into a home swimming pool when no-one else was at home. It worked.

                  I had a patient who had a complete C-4 injury who convinced his PCA to assist him to take 40 Seconal. It worked, and the PCA was prosecuted and did prison time for assisting in a suicide (originally was charged with 2nd degree murder).

                  I had a patient with a C-5 injury who drove his power wheelchair into the path of a oncoming big-rig truck. It worked.

                  I had a patient with a C-6 injury whose brother set fire to the house with him in it to "release" him. Never did find out if my patient had asked his brother to assist him in this, but he died, and the brother was sent to prison for murder.

                  This does not even start to count those who probably committed "passive suicide" by not eating, refusing care, letting themselves get riddled with pressure ulcers and ultimately dying of pneumonia, sepsis or renal failure.

                  I am certainly not advocating suicide for people with SCI, but I think that any health professional who does not take seriously suicidal ideation from someone with a SCI because they are "too disabled" to act on it is fooling themselves and risking loosing patients and friends as I have.

                  Comment


                    #10
                    KLD and suicide

                    Man, KLD lots of your patients flick the switch hey ??
                    Have you ever asked yourself....
                    Just kidding [img]/forum/images/smilies/eek.gif[/img]

                    Comment


                      #11
                      Sue

                      I agree with you. In fact I had a very similar conversation with the research director at Craig about two weeks ago and then with my neurosurgeon last week. The answers were the same.

                      After two hours of sometimes frustrating conversation I wheeled away with the same conclusion and standard answer that no hospital, facility, doctor, neurosurgeon would ever perform any experimental (trial) cure related surgery or protocol without approval from our federal gov't, the AMA, IRB, etc. No matter how many documents we could sign absolving them from any potential legal, moral, ethical responsibility there is no way they would do it. Basically the system is designed to save ourselves from ourselves regardless of how much we may want to try something new or experimental.

                      Our U.S. system is trial and error, trial and error, trial and error. Slow, tedious, thorough progress leaving nothing to chance. Not a good sign for us who want something today but very good for safety, efficacy and the future. How long? anybody's guess. Our only possible reaction to satisfy our need for immediate gratification, as I see it, is to pursue experimental theories, procedures, protocols abroad. This will be true, again in my opinion for at least 3-5 yrs. Let's hope someone (Russia, Taiwan, Ecuador) gets it right sooner.

                      Not all of my conversation with these two was all doom and gloom as far as U.S. experimentation is concerned. The silver lining that I got out of all this is that there are more clinical trials going on here than ever (8-10), there are more additional / alternate expected drugs, therapies going to be offered within the next two years than ever (7-10) before and in my neurosurgeon's estimation (he had just attended a neuroscience meeting) that someone will stumble on a major molecular neuroscience breakthrough within 2 years.

                      Ultimately, we either remain patient and attentive to the U.S. progress or for immediate gratification we pursue alternative ideas abroad. Either way alot of progress is being made worldwide and we have to individually make the decision as to whether we follow our gov'ts slow, methodical, but extremely effective pace or we possibly sacrifice safety and unproven anecdotal evidence elsewhere.

                      I still don't know which one is right but I do know that I'm not going to be able to convince any U.S. doctor or neurosurgeon, no matter how talented and aggressive they might be nor how much science available, to attempt any experimental procedure on me. The laws and rules are in place and we are not going to change them. Not what we want to here but ultimately, to admit it to ourselves this is to our benefit.

                      Onward and upward.

                      Comment


                        #12
                        sue,
                        experimental surgery happens all the time in the U.S. however since sci is like a freak in nature to the medical field, we will be held to a never win standard. nevertheless, we can lower those standards. sue you used the words experimental surgery. 2 scarey words, especially surgery. the cure for sci is moving away from traditional surgery procedure. injecting cells that migrate to injury site, taking pills that inhibit NOGO, pills or injection that grow axons, etc... i dont consider this surgery.

                        Comment


                        • #13
                          Chris, just talking to each one of our doctors is the way to start. Many seem to think that if we arrive in their offices clean, decently groomed and with a family member or friend we are well adjusted and happy. That is crap.

                          KLD, I'm not exactly advocating suicide here. Under normal circumstances suicide is the result of depression or an active role played in what some feel is the end of their lives (old age). I know exactly the words I cannot say without meeting the local shrink. I am not depressed. I doubt few on this forum are. We still want to do what we used to, we are not willfully cutting ourselves off from family or friends, more than most we see the tiny little things daily that those who are depressed cannot see and thus lose hope in their own lives.

                          I am advocating telling our main healthcare person who can do something such as neurologists or neurosurgeons what our limits are. I don't want to spend a lot of time in bed but I currently have bronchitis and the meds knock me out. I want to go wind surfing off the Georgia coast. Is that depression or idealation? I don't think so.

                          It may be just a few people this year but we need some people at that meeting even if it is just at the breakfast. Doesn't the SCS have a chapter in San Diego or southern California? I'm looking for press people now. But we need wheelers. How about posting names here or emails and names to me (DTXNEWS@aol.com) or to Steven Edwards? You still at Rand@mindless.com, Steven? If we can get 50 people and 2 press articles it will be a good start. And we are looking for cure and cure/care people not ADAPT or NDYers.

                          Steven, we normally stop near Fayetteville NC but I'll check out the map and maybe arrange something on the trip back.

                          Comment


                            #14
                            Susan:

                            This topic hit the nail on the head! I understand that the "do no harm" medical creed leads to a safety oriented "conservative" approach towards clinical testing of new treatments. But when the attempts of responsible scientists to bring regenerative treatments to clinical trial are blunted for VERY questionable reasons by well- established peers whose previous work stands to be eclipsed, I question what the conservatives are conserving.

                            For example, I have before me the New York reviewer's comments regarding their rejection of the grant proposal submitted by Diapulse Corporation and UAB to the state-supported "Paul Richter Fund." Among the reviewer's comments, they point out that improving spinal cord blood flow in acute or chronic SCI has never been proven to improve functional SCI outcome. They also correctly point out that no one has ever proven that "Replicon" neurotropic delivery (NT-3, NGF, IGF, etc.) or adult stem cell usage will lead to functional reversal of SCI. However, their exceptions were the exact reasons why Diapulse and UAB submitted the grant proposal...to prove or disprove these avenues and (if warranted) move to clinical trial, which gauged by their comments must have scared the Hell out of New York's review board.

                            You're right. We really DO have a problem. But it will NOT be solved simply by an awareness campaign...unless the result of such a campaign is the removal from grant proposal review boards of those with personal or professional interests in advancing or suppressing specific research avenues, or curative treatments in general (such as the University of Maryland's Howard Eisenberg, and McDonald of the University of Washington, St. Louis, both of whom have no business on New York's review board. McDonald has his own porcine stem cell project running and Eisenberg was an original proponent of NASCIS). Of course, the recent ethical violations concerning New Jersey's state-supported SCI fund only punctuate this obvious point.

                            Ps. See DA's "dr young clear up this confusion" post for details of UAB's un-funded project aimed at quickly bringing an effective regenerative treatment for chronic SCI to clinical trial.

                            [This message was edited by James Kelly on October 18, 2001 at 06:31 PM.]
                            James Kelly

                            Comment


                              #15
                              Originally posted by dtx:

                              You still at Rand@mindless.com, Steven?
                              Yup. I can still be reached at rand@mindless.com.

                              -Steven
                              ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

                              Comment

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