Discovery Health Chat with Christopher Reeve
Date: April 19, 2000
In this live chat Christopher Reeve did to promote The Toughest Break, a 1996 Canadian documentary he did that is premiering in the United States on Discovery Health Tuesday, April 18th at 8pm, he talked about the world of spinal cord injury and the astounding research being done on spinal cord regeneration. Reeve discussed the latest research on spinal cord injuries.
MODERATOR: Welcome to tonight's Discoveryhealth.com chat. Our guest is acclaimed actor Christopher Reeve. Since his injury in 1995, he has put a human face on spinal cord injury and has become a powerful spokesman for the reward of basic research in general, and for all people with disabilities. Thank you for joining us this evening, Christopher.
Christopher Reeve: Thank you. It's my pleasure to participate tonight. I feel an important responsibility not only to further research, but to support quality of life issues for all people. The Christopher Reeve Foundation splits its revenues in two ways. Not only do we support research, but we also give out quality of life grants to enhance living conditions for disabled now.
China: How do you keep your positive attitude?
Christopher Reeve: The way I keep a positive attitude is by trying to do something constructive everyday, not matter how I feel. Perhaps my 28 years as an actor - which required a lot of discipline - has helped me to do that.
I don't always feel good every day, in fact some days I feel far from it. But doing something every day, a little exercise or doing something in your environment that is constructive, helps you change your attitude when you are down. I also have the benefit of being in contact with many of the best researchers around the world, so I am kept informed about their progress, and that progress has been truly amazing over the last few years.
We all have reason to hope, not just people with spinal cord injuries, but people with heart disease, cancer, Parkinson's, Alzheimer's, MS, diabetes and many other conditions. Finally research has come of age. And we'll be able to deliver tangible results to humans within the next few years.
Sandie: Mr. Reeve, when will you be doing another movie?
Christopher Reeve: I am in the process of casting a film right now, which I hope will be in production late this summer. And I am developing another film based on a book that I recently bought, but I can't say more about that project yet.
DA: Mr. Reeve, spinal cord injuries (SCI) has been underfunded for 21 years, why don't you demand Congress 2 billion dollars for research? Doubling SCI research in 5 years will delay treatment 10 years. Congress is giving back $150 billion in tax cuts. Why can't you demand a one time 2 billion of that 150 billion to get these trials started?
Christopher Reeve: No individual can single handedly create that kind of scenario. However, since Washington is based on compromise with many groups competing for funding, I think it is actually a remarkable achievement that lobbying efforts over the last few years have resulted in a 15% annual increase in the budget of the NIH. By the year 2003 the total budget of the NIH will have doubled since the time of my accident, and we are fortunate that the new director of the NIH. Dr. Fishbach, considers spinal cord injury a top priority.
Just in the last few years, research dollars for SCI have gone from $47M to $60M now, and will end up at more than $80M annually. Given the way Washington works that has to be considered a significant achievement. The best we can hope for is that politicians are made aware of the fact that helping disabled and chronically ill people is a very important responsibility and that government must lead the way.
Elena: What one thing do you feel has helped you the most to survive the accident and then to continue working both as an actor and a speaker?
Christopher Reeve: The love and support of my wife, family and close friends. No one can face a difficult illness or disability alone, but with emotional support and good relationships you can make the best of any situation.
Don Delevie: What information do you have on nerve cell regeneration? When will clinical trials begin? I'm a C1 C2 with above normal function but a 14-year-old injury. Do you think that I may be eligible for a trial?
Christopher Reeve: I'm afraid that I can't give you a specific answer. Some scientists believe that human trials could start within 1-2 years. Others think it may take longer, and of course, in the interest of safety the first human experiments will be done on patients with much lower level injuries. But if those subjects improve and the treatment are found to be safe, then they will begin to work with people who have chronic injuries and, as I understand it, there really is no limitation on how long one has been injured, provided that there has not been too much atrophy of muscles or loss of bone density. That is why exercise is very important, especially for chronic patients. Our bodies must be as healthy as possible in order to get the most benefit as new therapies emerge.
Chattycathylynn: Wouldn't research on the discs also help in the spinal research? Disc injury is more prevalent than all injuries.
Christopher Reeve: I don't think that discs and the cord are really the same issue. For example, I have several crushed discs lower down my spine, but this is not something that the doctors are particularly worried about. There is new laser technology that makes repairing or fusing a disc relatively easy. Repairing the spinal cord itself is much harder.
TKay: Who is at the leading edge of spinal cord research? By the way, I loved you in "Somewhere In Time."
Christopher Reeve: Thank you, I'm glad you like that movie. It is also one of my favorites.
I don't think there is one individual who is above the rest - or if he is, he shouldn't know about it because that might stop him from sharing his information in the interests of winning a Nobel Prize. The cure will only come by the collaboration of the best scientists all over the world working together, and we are now beginning to see that happen. This is something new for scientists. But fortunately, they realize now how important it is to collaborate.
Cashew: How do your children help you during your recovery?
Christopher Reeve: My children have been a tremendous help to me just by being themselves, and I feel that one of the things that has not been ruined by my accident is that all three of them, ages 20, 16 and 7, are going about the normal business of kids their age. While I can't do as many things with them as I used to, that leaves more time for really communicating. We have long talks and I listen to their opinions and concerns and probably we're closer since the accident because I have the time to be still and really pay attention to them.
Rporro: After the several operations that you had, do you feel like there's promise in the future of correcting problems like yours?
Christopher Reeve: If you had asked the experts in neuroscience five years ago about the prognosis for the future, most of them would have given you very little reason to hope. But with the discovery of the Nogo gene that inhibits regeneration, with the discovery of stem cells, with the discovery of how to re-myelinate nerves, and the benefits of exercise in keeping the healthy part of the cord healthy, and with remarkable success researchers have had with rats, I feel that it is safe to say there is unanimous agreement among researchers now that spinal cord injuries can be cured. The issue will be how much money is dedicated to the work that needs to be done.
Anasu: Hi Christopher, I actually have multiple sclerosis and over time my nerves have severed. I am hoping the antibody to the Nogo gene will help us MS'ers as well. Any idea on the time frame? Some of us are running out of time. :) And, thank you, we are all going to benefit from this research.
Christopher Reeve: Fortunately the problems of MS and the problems of damaged spinal cord are very similar. But the Nogo gene is not a factor in MS. The issue is re-myelinating nerves and preventing further de-myelination. Scientists are very optimistic that they will be able to achieve that. In fact human trials in re-myelination will probably be among the first experiments conducted in the whole area of central nervous system (CNS) diseases.
Younis: I had the pleasure of interviewing June Fox (who helped you with "Still Me") for my website. I was wondering if you have any plans to write another book soon?
Christopher Reeve: No I don't plan to write another book in the near future, but I hope that in the not too distant future that I'll be able to write about recovery - not only my own, but for 100,000s of other people in the same situation. There's no way to speculate how soon that will be, but I think we're talking years, not decades. So maybe a book will happen sooner than later, who knows?
Cameron80: Is there a log of this chat available?
MODERATOR: A transcript of the chat will be available on the Discoveryhealth.com site in approximately 2 weeks.
Karen: First I want to say how much I admire your courage and your determination through this ordeal. You are an inspiration to many. My question is, just how close are we to finding that cure?
Christopher Reeve: Once again it's impossible to say right now how long that process will take. One thing to keep in mind is that scientists are very conservative, and when they lay out a strategy towards a cure they often find shortcuts along the way, and this can save many years. When you hear someone's prediction, keep in mind that the process can be shortened. The discovery of the multi-uses of human embryonic stem cells was just made 18 months ago, and now those cells are considered the best possible route to a solution for almost any disease in the body.
Prior to that discovery, many researchers believed that you would have to regenerate the entire spinal cord in order to walk again. That has now been disproved because of the stem cell discoveries. Right there we probably saved about 3-4 years of research in the wrong direction. So anything can happen, and fortunately the therapies that are being developed appear to not cause toxicity in the body and do not seem to be rejected by the immune system. Scientists now feel that the body wants to heal itself, and stem cells are a perfect example of this - using cells that are derived from embryos that will not become human beings, in order to save the lives of thousands of human beings.
Lleif7161: Are you still actively working in Hollywood with the directing as will as the acting?
Christopher Reeve: Well, I live in the NY area and I am still involved with directing. More acting roles may come along. But I have to admit that I enjoy directing, even more than acting, and so I'm very lucky that my accident forced me into a career that I really enjoy, when so many other people lose their careers or livelihoods because of a spinal cord injury.
DjintheUK: Is it still difficult to convince people that a cure for paralysis really is possible and is not something that is unachievable?
Christopher Reeve: I find that everyone has his/her own attitude regarding the cure. People who have been injured for a very long time tend to be the most skeptical. And I understand that, because it may or may not be possible to improve after a long time. But I think that first of all, it's important to ensure that we are recognized as valuable members of society, that the provisions of the ADA are maintained and enforced, and that everyone who lives with a disability has the resources made available to them to have the best quality of life right now. And then I think, that when I explain to patients much of what I have learned about the research and about the amazing progress in just the last few years and I tell them about the real sense of urgency that the scientists are now beginning to understand, then they join me in cautious, but realistic optimism.
I always remind people about the Apollo 13 mission to the moon that had to abort because of massive damage to the space capsule. At one point the CO2 levels were building up in the capsule and the astronauts had only about 30 minutes left to live, but technicians on the ground threw away the manual and threw away the checklist and using hoses, boxes and duct tape, they came up with a way to stop the rise of fatal CO2 levels. That is a prime example of what we can do as a society when we really want to. And now, because so many people are suffering from all the diseases of the brain and central nervous system, I think that a great deal of money and attention will come our way and yes, there will be a solution.
Joey: It must be very difficult to travel; yet you seem to be in demand for public appearances. How do you decide which to attend?
Christopher Reeve: I feel very fortunate that I am able to get out of the house and travel around the country speaking at rehab centers, to insurance companies, to managed healthcare professionals, and at motivational seminars. Travel isn't easy because of the vent, but I have a lot of wonderful help, and when I travel, 5-6 people who are highly trained and have worked with me for years come with me to make sure that I am safe and that everything goes smoothly.
MODERATOR: Our chat is just about over this evening. Thank you, Christopher Reeve, for being here and discussing this matter with us in such great detail. Is there anything you would like to leave with us tonight?
Christopher Reeve: I'd like to thank everybody for coming online tonight. And I especially extend my best wishes to everybody who is living with a disability or caring for someone who is disabled. I know what a hard job it is. But there is great reason now for genuine optimism and I pledge to everyone that I will not go out in public, or do commercials or do PSAs (public service announcements) that are not based in fact, and that I will try to represent the whole disabled community in a responsible way. I know that people in the media pay more attention to me. That's the way our society works, but I think that all of you who do not get an opportunity to be heard are the real heroes and you have my greatest admiration. Thank you.
MODERATOR: Well, our time is up. Thanks to everyone who has participated. We had a lot of great questions. I wish we had more time so that we could get to them all! A reminder to those that may have joined us late, a transcript of tonight's chat will be available soon on discoveryhealth.com.
Christopher, we appreciate that you have taken the time to join us this evening.
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All rights reserved. Copyright 2000.