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Thread: The basis for all the negativity

  1. #1

    The basis for all the negativity

    I just received a private message from a member who pointed out that her "friends" had told her that it would take a long time for any treatment to be shown to improve spinal cord injury, that it would take twenty years or longer even after the CRPA is passed. I thought that I would comment publicly about the negativity that has long dominated spinal cord injury.

    Why people were so negative about the prospects of recovery after spinal cord injury or the possibilities of therapies that can restore function? Why do doctors tell patients the day after their injury that they would never walk again, despite data that indicate that this assertion is incorrect? I know of no other condition where such pessimism is imposed on people. You don't find doctors telling patients with cancer that they have no chance to recover and that there will be no therapy in the future that would help them.

    When I first started in the field in the late 1970's, my neurosurgery colleagues (I was on the faculty of the one of the best neurosurgical departments in the world) told me that there is no possibility that any drug would be helpful for spinal cord injury. One of my closest friends told me that restoring the spinal cord is like reconstructing a crushed strawberry and that was crazy for me to think that it could be done.

    When our first experiments showed that methylprednisolone improved blood flow in injured animal spinal cords and improved recovery, most of my colleagues in the field were skeptical that this would work in humans. It took five years to convince my colleagues to test the drug and to persuade NIH to fund a clinical trial to test the treatment. Fourteen leading spinal cord injury centers in the United States participated in the study.

    Even after we showed that methylprednisolone significantly improved neurological recovery by about 20% in people with both complete and incomplete spinal cord injury, the naysayers continued. This was the first double-blind placebo-controlled multicenter clinical trial that passed the most rigorous peer review and was published in the New England Journal of Medicine. Several other clinical trials confirmed our results. Despite this, the naysayers continued.

    The naysayers first claimed that the improvement was not “functionally significant”. However, as most people with spinal cord injury know, the return of even one or two levels of function is very worthwhile. Some tried to claim that a 24-hour course of methylprednisolone is harmful. But, our trial showed clearly that it was not. Nevertheless, without presenting any credible data of their own, doctors managed to declare that methylprednisolone should be an “option” and not a “standard” of therapy.

    I am not telling this sad story to say that I am right and they were wrong but simply to point out that there is an unusual level of pessimism and naysaying that has long impeded progress in the spinal cord injury. That pessimism still exists today. It shows up in the form of people declaring that no therapies are possible and that, even if therapies were possible, their crystal balls tell them that would take 20 or more years before any therapy will be available.

    Pessimism is a self-fulfilling prophecy. We don’t need a crystal ball to tell us that if we don’t try, there will be no therapy. If we don’t start it now, it will take even longer. The problem with saying that it will take 20 years is that it will take 20 years. Let’s not fall into that trap of pessimism. Nobody ever said that it would be easy but let’s not make it impossible before we even start. Christopher Reeve died trying. Let's not compound that tragedy by giving up before we try.

    Wise.

  2. #2
    Do you think the pessimissm comes about like I have had mine for a little over 4 yrs now, and it doesn't seem like that researchers are no-where any closer today then they were then?

    I'm not being negative, I was just trying to come up with a anwser.
    Last edited by duge; 10-15-2006 at 09:17 AM.

  3. #3
    Dr. Wise, thanks for posting this. It always helps to have someone in the field to be optimistic. I think the reason for the pessimism though is based in the reality we must live with. Up until recently, everyone believed that injury to the spinal cord could not be corrected. This was based in the fact that it was the rare exception that anyone with an SCI ever improved. Now many, but not all, people believe that SCI can be "treated". This has been the case for 10 or 15 years (my guess) now. Unfourtunately, other than your work with methylprednisolone, nothing has filtered its way down from the research lab to the patients. No victim of SCI has been able to "stand up" and say look "I'm better" because of this treatment. In order to eliminate the pessimism, it must shown that the theory can be translated in effective treatments for humans. Once this can be demonstrated, patients and families will reject the pessimism.
    It's like running in a dark tunnel. You really don't have any idea how long the tunnel is or how far you have to run so its easy to think that the tunnel never ends. That is until you see the light and the end of tunnel. I just hope the light isn't an oncoming train

  4. #4
    Senior Member Rollin Rick's Avatar
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    I agree Dr. Young. One of the things that keep me going is that I have plans for the future and I intend to keep them. You among many other researchers have come a long ways in the field of SCI. As far as my crystal ball, I see light at the end of the tunnel. As for myself, there is no way in hell that I'm going to give up, there are times that I'm frustrated with trying to pass the Christopher Reeve paralysis Act, but after reading many of your great post, I'm full speed FORWARD. Oh, as far as DA's post in the cure forum, ya gotta love Em.....

  5. #5
    Senior Member lynnifer's Avatar
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    Great post, Dr Young. I believe I had the same PM from the same person so I'd like to respond as well.

    I was paralyzed in 1985 - the same year that the Miami Project started. I even remember a doctor in emerge telling me that there might be a cure in five years because of this place. A little blip on the radar screen, but I never forgot it, I wanted to hold on to whatever hope someone was giving - it's human nature to crave survival. Every other doctor, nurse, OT, PT and everyone else I ran into for the next three months prepared me to live in a wheelchair. That was the end of it - get over it and get on with your life. I was released on my 13th birthday. I even remember putting Sting on the car radio, much to my older parents chagrin, and gazing at trees and distantly familiar things on the one hour ride home. I was silent but in awe, I had made it but what did my future hold? In my parents' eyes, what the doctor said was equivalent to God ... so after 3 more months of missing some school to attend therapy in a pool, lifting weights but none of it really went anywhere ... we accepted that I would never walk again. In fact, the last day of my therapy was the day that the shuttle Challanger exploded and I was in grade 8, but I digress. Just last year, my sister said that it was great all the things that I've done with my life - but I've never accepted living in this chair and it was quite obvious. Perhaps it was that 10 second voice of hope from a nameless, faceless, probably specialist, by now, that I met in the ER.

    Enough about me - twenty years ago, the internet didn't exist as we know it today. That's one huge advantage we have on our side. Scientists' information, courtesy of Dr Young and some very studious posters (who are much appreciated by the way), allows us to pick and choose what we think are the smartest avenues of research. All this information right at our finger tips!

    Twenty years ago, no one in my rehab was hooking people up to electrical stimulation. Twenty years ago, no one even thought to stand me up and keep me doing it so I wouldn't have bone loss. Twenty years ago, no one told me to take special care of my shoulders. Twenty years ago, no one even mentioned that I might have arthritis early (hot damn my right hand and wrist hurts this week!). The only advice given was watch your skin and watch your weight.

    Upon being released back into the remnants of my life, my school had to make arrangements to install a ramp and wheelchair accessible washroom. The board wanted to put me in a special school in a town 30 minutes away - can you imagine? My mind is alright, it's just my legs that don't work, but I would go to school with children drooling and in a vegetative state? The school board's transportation refused to take me to and from school or have anything to do with me. School boards being what they are - distant decision makers with no dealings with the actual children they affect (I never met any of them) ... the small town school decided to build a ramp and change a washroom so I could graduate with my friends (this was also after several hours, days of my mother being on the phone tearing a strip into people). A local car dealership who also ran the busing company, hired my mother as a driver and lent us a car to take me back and forth - screw the school board! Farmers stick together. Several years later, that school principal who was also integral in getting me back with my friends and into high school, died, and I went and paid my respects to that man and the other principal as well who DID SOMETHING and made a positive change in my life, as well as countless others, just so that I could graduate from the same schools as my siblings and father and so many other Spences had done.

    I'm getting way off base here and perhaps taking a lesson from Bob (kidding!)

    But my point is, that being in a wheelchair was like being lost in a world of unfamiliarity. I couldn't go anywhere without dad popping me up a curb or my brother and his friend carrying me up stairs to go see the dentist the one and only time I got to go because it was such a hassle and I almost took up the whole waiting area. It was a staring contest and it was the most abuse my self esteem, already broken, at 13 could take. My brother and his friends would take me to the movies to get me out of the house (besides school) and I even had to sit in the aisle, on a downward angle with the brakes on and my neck cranked up, while person after person tripped over me and spilled popcorn and pop on me and giggled in the dark.

    You guys today don't know how lucky you have it. Ramps, automatic doors, a flat space at the theatre at the front or back or halfway down. (UNHEARD OF I TELL YOU twenty years ago). EXPECTED ACCESSIBILITY at malls, grocery stores, banks. Access to vehicles that can be driven by us. Employment. School attendance. Just 17 years ago the two universities I went to look at in London and Windsor - neither had a wheelchair accessible washroom in them! For gawds' sake people!

    And hope - not just a 10 second blip on any fricking radar. There's a reason I put the word hope in blood red, but we'll come back to that.

    I found the internet in 1997, when I was out on my own and working and could afford to buy a computer. What do you think was the first thing I typed into a search engine? Transverse Myelitis. I never spoke it outloud but what I was thinking was that there was a cure somewhere shortly and surely I was just going to miss out on it. I found the Transverse Myelitis Internet Club online. For the first time, I had read the words 'can it be cured?' from someone else. That got my attention. I was hungry for what seemed like taboo knowledge.

    In 1999 I started at the police station. My first day. Lunch break. Surrounded by trained killers (that's all I could think!) on either side of me. In my mind, I could feel the coldness coming from their holstered guns! I'm extremely quiet and nibbling at my lunch thinking, 'Could they have sat any closer, sheesh!?' In retrospect they were probably thinking, 'Have we hired a retard now?' Some gave me harsh looks, some were smiling and saying hello. The fat one on my left blurted out, "So what happened to you?" The athletic, more seasoned and good looking officer on my right sets down his food and declares, "Awwww Terry, did you have to? I'm sorry for his behaviour ... Terry, you idiot!" In wide eyed amazement, I recalled in short order that I had a back pain, fell and thirty seconds later I was paralyzed. Some unheardof virus, no cause or no cure. "Unacceptable!" Terry declared. For the rest of that ten hour shift, he asked more questions and regaled stories of documentaries he had seen, declaring my situation, "Bullshit!"

    Sadly enough, that was my first run-in with an AB 15yrs later who said the wordunacceptable to paralysis. He takes credit for 'firing up my ass' as he puts it, for the hope I have today. I poked around some more on the internet. Not long after, I discovered CareCure and the floodgates of hope really opened.

    I don't need to list the reasons for hope - they're all around these pages and yours for the printing off, following up on and seeking out. I just wanted to show you from my own personal experience the reason for hope. I have gone from old ladies, relatives and strangers saying, "Oh you poor dear, the rest of your life in that thing - I wish it was me and not you," to "Oh I saw a documentary the other day and thought of you."

    You have access to so much information and equipment now that it is mind boggling. If you're one of the lucky ones and it sounds like you are, you can afford it and utilize it. There are three high profile doctors working on this - a bright scientist of the year according to a recent magazine profiling Dr Young, a 20/20 special report with Dr Keirstead and stem cells that millions of households saw and then of course, is Superman's doctor, Dr McDonald who was never far behind in any mention of Christopher Reeve.

    Short answer:
    Do I think there's hope? Yes. I really do. For you. For the other newly injured ones. Most definately. I can say with full faith that I guarantee it.

    I will come back to hope now. There will be deaths, several, before this is finished. Some will succumb to infections from pressure sores (probably me), some will die of pneumonia, maybe others will die of other accidents or illnesses - I know of 3, two from cancer and now Queen. I just think in my mind of the thousands that have died - without hope. Not knowing the internet, not knowing that every part of the world had doctors working on this, not knowing what lies on the horizon and that people cared - that knowledge alone is comforting! The best advice I can give is don't let yourself become one of those. Take care of yourself. Keep your body limber and strong. Stand. Do that pool therapy. Every night when I go to bed, even 21yrs later, I have a thing that I do - I try and wiggle my toes, move my legs every night. I have never given up.

    Every one of us that exists today - and goes out to school, shopping or working, living and breathing, is aiding in a cure. We are OUT THERE and BEING SEEN and a constant reminder that there is a medical mystery that needs to be solved. Bob from Florida said he hasn't lifted one finger for a cure in a post recently - wrong. He has been out in public, doing something, and somewhere someone wondered why he couldn't walk - a child - a future scientist, a student - a future rehab nurse. The possibilities are endless. We are a question without a current answer, but many people are working on it. I say we continue to unite and be seen, we continue to raise funds and send them to where we see the most hope. This can be done individually or as a group. Don't give up hope though. Never give up hope, or you're already dead.

    This was a very long story and I'm sorry as such, but it was in my telling that I went from, 'Sorry about your luck kid,' to 'Oh my gawd this may actually happen!' Can't you see the hope? If I can ...

    I leave you with a quote from one of my favourite movies, The Shawshank Redemption, that reminds me whenever I even hear the actual word hope:

    "Hope is a good thing. Maybe the best of things. And a good thing never dies."

    It's now Sunday. Relax, spend some time with family or friends. Forget about the chair and immerse yourself with people who really care about you and don't see the chair - they see you - they really do exist I assure you. Determine your future. Think about what I wrote. Take care of your body. This isn't over, not by a long shot, because we hope.

    (Hope I've helped and not wasted a huge amount of server space!)
    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

  6. #6
    Quote Originally Posted by duge
    Do you think the pessimissm comes about like I have had mine for a little over 4 yrs now, and it doesn't seem like that researchers are no-where any closer today then they were then?

    I'm not being negative, I was just trying to come up with a anwser.
    Duge,

    I don't understand. What do you call the demonstration that 90% of people who have incomplete spinal cord injury can recover walking within one year? That is not "closer"? Dozens of therapies have been reported to regenerate the spinal cord and improve functional recovery. Embryonic stem cells have been reported to replace neurons in the spinal cord and grow their axons out of the spinal cord to re-innervate muscle. These are not progress?

    Nearly 12 years ago, Christopher Reeve asked me whether a cure was possible. I told him that I thought that a cure is possible. He asked me how long it would take. I said that it would take a minimum of seven years, provided that we worked hard, had sufficient resources, and were lucky. Scientists have worked hard but we have not had sufficient resources and we have not been lucky.

    We have not had sufficient resources. Our government currently invests less than $100 million per year to support research to solve one of the most difficult problems in biology, regeneration and repair of the spinal cord. By contrast, they invest well over $2 billion per year on AIDS, a simpler and easier problem. Our industry has not invested in clinical trials for spinal cord injury. In the past five years, we have had only a handful of phase 1 clinical trials and one phase 3 clinical trial. By comparison, multiple sclerosis has had hundreds of trials. Finally, private sector funding of spinal cord injury research has declined over the past three years.

    We have been unlucky. In 2001, the terrorist attacks of the World Trade Center and Pentagon distracted America, resulted in the invasion of Afghanistan. We have had numerous catastrophes, including Katrina, that have siphoned not only the attention of America but billions in funds. We have been unlucky in having re-elected a President who not only has not supported spinal cord injury research but obstructed stem cell research. Despite members of Congress claiming that adult and umbilical cord blood stem cells are curing diseases, they have done little or nothing to increase funding of such research.

    What can we do about this? The facts are clear. United States now spends less than $100 million per year on spinal cord injury research, including clinical trials. We spend more before breakfast every day on a fruitless war in Iraq than on all of spinal cord injury research every year. At the same time, we are spending over $10 billion per year on care of people with spinal cord injury. If the research yielded therapies that restore function to even 10% of the people, it would return over tenfold the investment.

    Politics is clearly the obstacle. It was clearly illustrated in the 2004 elections when John Kerry and John Edwards committed themselves to getting people like Christopher Reeve out of wheelchairs. On October 10, 2004, John Edwards stated:
    If we can do the work that we can do in this country -- the work we will do when John Kerry is president -- people like Christopher Reeve are going to walk. Get up out of that wheelchair and walk again.
    — John Edwards, October 10, 2004, campaign event in Iowa''
    http://mediamatters.org/items/200410130006

    Senator Bill Frist, majority leader of the U.S. Senate, called these remarks "crass","shameful", and "false hope". The Christopher Reeve Paralysis Act (CRPA) has languished in Congress now for five years, asking for a mere $100 million per year to establish six "Paralysis" centers and the NIH to coordinate activities for clinical trials of therapies to reverse paralysis (Source). Why has it not passed? If this is not politics, what is it?

    Wise.
    Last edited by Wise Young; 10-15-2006 at 11:41 AM.

  7. #7
    Lynnifer;

    The possibilities are endless. We are a question without a current answer, but many people are working on it. I say we continue to unite and be seen, we continue to raise funds and send them to where we see the most hope. This can be done individually or as a group. Don't give up hope though. Never give up hope, or you're already dead.
    Right on!

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  8. #8
    My God, Lynnifer, you are eloquent. I can feel the spark of a 13 year old's forbidden hope and the shame of being shy and being the one taking up more than your alotted space in the dentists office.

    I can FEEL what you wrote.

    Just had to say. You amaze me.

  9. #9
    With out hope you have nothintg.Laying down isn't going to accomplish anything.
    Be yourself!!!
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  10. #10
    Bravo Lynnifer!!!!!

    That's one of the best posts I've read on these forums in a while. Maybe because I could relate to so much of what you said having been injured in 78 in the pre-ADA world where SCI'ed children were considered retarded and relegated to special schools and nothing was WC accessible anywhere. After 2 IQ tests (because they couldn't believe that a 'retard' could score in the 130's) and wasting a year at a special school, I was finally mainstreamed. I also found spinewire in 97 (did you post there?) and also held onto the hope that my doctor gave me in the early 80's that there'd be a cure in 15 years (1993) which was when the GM1 trials were underway. I saw a news blurb about it and thought yessss, my doctor was right! LOL. We have come such a long way since then and there is so much cause for hope and optimism today. If people only knew how paltry SCI research was then compared to now they'd be hopeful too. I got on with my life but still want B/B control. I can't imagine ever not wanting just that little bit of dignity and independence back and I'll always want it. A cure that restores ambulation will come and although walking is last on my list, those injured more recently have that bit of icing to expect. Those of us who's muscular/skeletal systems are too far gone to expect walking will still gain to benefit and knowing that is reason enough to keep me going. As Wise said, it won't happen unless we make it happen!
    Last edited by antiquity; 10-15-2006 at 01:45 PM.

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