REHABILITATION RESEARCH - NO REASON TO HOLD BACK
VA REHABILITATION RESEARCH AND DEVELOPMENT CONFERENCE
CRYSTAL CITY, VIRGINIA
February 21, 2000
Dr. Mindy Aisen, M.D., Director of VA Rehabilitation Research and Development Service, introduces guest speaker Christopher Reeve:
We are presenting you with a plaque, and I'd like to read it to everybody. The Department of Veterans' Affairs Rehabilitation Research and Development Service extends its sincere appreciation to Christopher Reeve in honor of his personal commitment to research on behalf of persons with disabilities.
The Christopher Reeve Paralysis Foundation and its predecessor, the Christopher Reeve Foundation, have successfully challenged the community of scientists studying spinal cord injury to push the field into the future, offering the possibility of true hope, not just for better care but for a cure. As a leader with vision, an articulate thinker, and a tireless advocate, Christopher Reeve has advanced the field of spinal cord injury research and serves as an inspiration not just to others with a disability but to us all.
Mr. Reeve: Well, thank you very much, everybody, and Dr. Aisen. It's always interesting to me - if I receive a plaque - and it's happened a couple of times - to hear such nice things about you while you're still alive. It's a nice surprise. They usually will talk about you after you're gone, but to hear such words of praise now, it's really meaningful.
I'm very glad to be sitting here talking to the choir that already is singing the right song. So many times I have to speak to groups who basically have an adversarial position to what I'm talking about and to what all of you believe. The whole VA system today is a model of what research can and must be. And when I look down the list of accomplishments of various centers and how proactive it is, I just rejoice.
I think my involvement in research and in rehabilitation came in June of 1995 when I arrived at Kessler in New Jersey, one of the best rehab facilities in the country. I was given a spinal cord manual, and of course I was not particularly interested in studying it, because there were things in it I'd rather not know about.
But the first thing I noticed is that it was written in 1990, and it makes no reference whatsoever to people with an injury above C4, and the real reason for that is because most of them didn't live or if they did live, the idea was nothing could be done for them. Well, that was really the thing that made me really angry, and anger can fuel progress and change if you don't let it get the better of you.
It's very difficult to be marginalized; to say, well, up to this point, people with an injury above C4 simply just didn't live or weren't even worth dealing with. And there was one terrible case of a woman who was a C2, a vent-dependent quadriplegic who was at home. She had 24-hour a day nursing care, but the nurses came from an agency, so many of them would come basically not knowing the patient, just showing up to meet the insurance requirements.
One particular nurse came to do the night shift, and she's somebody who had, unfortunately, a drinking problem. The patient, the woman, was in bed asleep. The nurse was downstairs, and the patient had a pop-off - the ventilator hose came off. The alarm sounded on the vent. There was a monitor system downstairs, but the nurse had basically passed out cold and did not respond to the alarm, and the patient suffocated and died.
Believe it or not, the defense's argument in terms of trying to reduce the settlement was to say she had no quality of life anyway. And this information came to me, and I volunteered to testify at the trial. And they settled out of court the next day.
So, I think the very idea that a defense attorney could go to sleep at night knowing that he was going to go into court and use that defense - sure, every defendant is entitled to the best defense, but at some point your conscience has got to have a heart.
I think the answer is kind of like building the transcontinental railway, and that is let's say all the great brains, all the researchers on every condition involving the central nervous system -- the brain, the spinal cord - they start researching on the West and head East. Patients have to start in the East and head West, and their job, our job, is to be in the best possible physical shape so that when we meet in Utah or wherever, halfway across the country, assuming that the tracks actually do meet and we drive in that golden spike, there is going to be the connection that will allow the patient to have a complete life and the best possible life. That really is the symbol for the achievement that has to be made - researchers and rehab specialists moving towards each other in a new way.
So, just to briefly take you through my own story, when I was first injured, I could only move my jaw. And gradually I could move my head. And first I was told that I was a C2 Complete. This was a completely erroneous diagnosis, because it turns out I have complete sensation all the way to the bottom of my spine, and that means a lot. I also have the ventral side of my spinal cord - the side that controls movement is completely in tact - so that I just have a 25-millimeter lesion on the dorsal side at C2 and that secondary damage did not go below C3. These are all very encouraging signs, and that helps give me the motivation to go to work to improve all that.
And I was told, to begin with, that I would never be able to breathe on my own. And for the first year or so it was true. And then I just decided I can't - I just can't - accept that. Now, you need C4 innervation to breathe, but what happened was I started when I was at Kessler, just before I left, and much to my surprise I was able that first day to breathe for about four minutes. I used my neck; I used my shoulders; I used everything just to try to suck that air in.
Well, let's fast forward now to nearly five years since the accident. Now, I'm working with two specialists from the University of Florida at Gainesville, and believe it or not, they believe that I now have enough C4 innervation that without having to go away to an institution and stay there for months and months and months, only trying to breathe and having no life, that I can use their training method, which is absolutely state-of-the-art, and if I keep going the way I'm progressing now, I'll be off the vent sometime later next year.
And that is simply because I, frankly, was unwilling to accept the idea of staying chained to this hose. They have such a progressive attitude that once they realized I had ascended to the point where I have C4 innervation, they just volunteered. They just contacted me and decided to help.
In another case two years ago, I had two blood clots behind my knee, and they were right in the same spot, one right after the other. And, of course, that's the side I have feeling on, which made it pretty painful, pretty unpleasant. I was put on Cumadin, and the blood clots eventually dissolved, but I was told that the vein would harden, and there would never be adequate circulation there again.
But by using FES (electrical) stimulation, by riding an exercise bicycle, by standing on a tilt table, by doing treadmill walking therapy, the next time I went back for a doppler and an ultrasound in that area, the blood flow was back to normal. I have completely normal circulation and no pain behind the knee.
And then the best thing to ever happen was I was introduced to Dr. Reggie Etherton at UCLA. He has pioneered treadmill walking therapy for spinal cord patients. The idea is that the brain really does not provide a lot of information to the legs in order to walk. In other words, it doesn't require heavy, heavy thinking to walk. He believes that there is energy and memory stored in the spinal cord that can be used.
He had never worked with a patient with my level of injury, but I guess just to humor me he let me try. Well, I was put into a parachute harness, pulled up onto the treadmill, and immediately passed out, simply because I had never gotten up that quickly before. So, I said, "No, no, no, no, no, let's go again." And this time they pulled me up and started the treadmill right away, and I was fine. And all the assistants needed to do was to plant my feet so that I didn't twist an ankle.
But the very first time, I walked. It was documented both by video and also by computer. So, I have a tape at home of this little green guy walking along, and there's definitely a bounce to his step, and it looks like he could skip any minute for joy. And that was me, first time.
Once again there's evidence of somebody saying, "All right, we've never tried it with somebody at this level before, but why not? Why not see where it could go?" And that is the attitude that we have to have. Forget limitation, throw away the handbook, and go and see what can be done.
I was very fortunate, because when I came back, Dr. Aisen set a program where I could go once a week and use the treadmill. It's not ideally suited for spinal cord patients, because you really need a system of bungee cords, and that's not available; in fact, the machine is in a tiny, cramped little room when it should be out in the middle of the floor and used for outpatients as well as stroke and spinal cord patients in the hospital.
But I want to tell you what it did for me. It reduced a bad case I had of heterotrophic ossification (HO) in both hips; completely eliminated it on the left side, and reduced it by 75 percent on the right side. And then a bone scan was done, because as you know, one of the things a spinal cord victim has to fear the most is osteoporosis which will eventually make it impossible to stand. So this bone scan was done. First, they took a core group sample of ten individuals of my general description, in terms of age, height, weight, et cetra. They did a bone scan on them, and they all scored 100 percent. And then, after I had been training for quite some time at Berg, they did a bone scan on me, and I scored 120 percent. And this is clearly because of the work on the treadmill.
Also, in terms of getting rid of HO and keeping the bone density strong, you get a cardiovascular workout and, clearly, getting the patient up and moving is one of the most important things you can do, and it's a crime that it's not available for everybody.
This is where insurance comes in. When I went home from Kessler, it was agreed that a physical therapist would come over to the house twice a week, but the insurance company would only pay for him to do work down my shoulder, because, at the time, I could only move my shoulders. And I said, "What, at 75 bucks a pop the guy is going to come over and move my shoulders? My staff could do that." I mean, shoulder shrugs? I'm not going to pay for that. So, he was a very nice guy, but we got rid of him immediately.
We went on to do our own program and, fortunately, a couple of my aides are physical therapists who have been in school for physical therapy. And we put a whole program together which, as I said, involves FES, the tilt table, the treadmill, the bike, and also diet, all of these things.
My goal, psychologically, I think is similar to most patients. Whether or not you believe your recovery is going to come is sort of like personally my relationship with God. I'm not sure I believe in God, but I'm going to behave as though he's watching. And I think that that's the same thing you should do with physical therapy. In other words, there's not going to be a magic bullet, but all the ingredients, I firmly believe, are there.
That's why I love the excitement about the (Superbowl) ad. Researchers were asked, "Is this irresponsible?" And they said, "No, it's a motivating vision." And you'll notice in newspapers or TV commentary, there's not one doctor, not one scientist, not one researcher as some out and made an accusation or said anything negative about the ad. Unfortunately, what happened is that because it played during the Superbowl, everybody was talking at their Superbowl parties and probably missed the beginning dialogue which makes it absolutely clear this is sometime in the future. Could be 2007, 2010, who knows?
But the scientists say now it's not a question of if, but when. So, if the patient knows that, and we do know that - and with the work that's being done by the VA system all across the country, it seems to me you all understand that - it's not about preparing a patient just to go home and accept his condition.
Rehabilitative therapy right now is about preparing for a new age, a new future, and anything is possible. And if it doesn't happen, what's the worst? You have a much healthier patient. So, there's a win-win situation there. If it doesn't work out, if all the therapies that are being worked on now run into problems or don't work in humans, I'm still going to be one very healthy patient. I'm going to live a long and productive and active life at the C2 level where even five years ago I wasn't supposed to be alive.
It really is a testament - see, I just love competition. When I find out there's nothing in the book about me because C2s don't live and their life isn't worth anything, boy, that really get me going. And that's what you need, you need a fire. The patient needs to be ignited, and thanks to the research that you guys are doing, you're giving real hope to people; yes, for looking for the cure, but meanwhile lighting a fire saying, "Don't sit on your butt. Don't just accept being the way you are, but challenge yourself physically as far as you can go, because you're going to be happier, healthier, more productive, and there may be big surprises along the way."
For example, my breathing. If I hadn't tried, I never would have known. Now I'm at the point where I expect I'm going to be of this hose while still living my life, directing, being with my family, running a foundation, doing all of that and getting off the hose by the end of next year. That was considered impossible, but it was also impossible to put a man on the moon. It was also impossible to cure polio. It was also impossible to cure diphtheria, cholera, TB, and AIDS.
In 1984, the government spent zero dollars on AIDS research, because AIDS was thought to be a death sentence, and the virus was far too complicated to deal with. Today, the government spends annually $1.8 billion a year on research, and people who would have been dead four or five years ago now have the virus virtually undetectable in their bloodstream, and they're living normal lives.
That was something thought impossible until we put money and talent together and aimed it toward a problem. We fix it, and what we have here with all the diseases, Alzheimer's, MS, Parkinson's, we simply have problems that need the money and the talent to address them, and we'll conquer them; there's no doubt about it. There really are no limitations at all.
I just am very glad to come here today to congratulate a group that is dedicated to that principle that there's no reason to hold us back. Yes, the problems are difficult, but with real dedication and with enough funding from the public and private sectors, we'll beat these things, we'll beat these problems. And millions of people around the world will have you to thank for it. Thanks very much.
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