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CNN LARRY KING LIVE
Interview with Panel on Multiple Sclerosis
Aired January 17, 2005 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
LARRY KING, HOST: Tonight, Meredith Vieira from "The View" and her husband, Emmy-winning TV journalist Richard Cohen on their fight against the unpredictable, potentially crippling disease he's lived with for three decades. And it can strike with no warning. It's multiple sclerosis. Actress Teri Garr is among the millions of others who share their battle. It took her years to figure out what this mysterious disease was. Alan Osmond, one-time leader of the hit singing group The Osmond Brothers has been living with MS for years too, and so has one of my dearest and closest friends Mark Barondess. They all open up about it next in-depth and personal on LARRY KING LIVE.
KING: We're in New York. The subject is multiple sclerosis, and our guest expert joining the panel is Dr. Fred Lublin, director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai, a neuroimmunologist, 25 years of work, a member of the National Multiple Sclerosis Societies board of directors. Before we get to all the individual cases and take your phone calls, doctor, what does it mean? What is multiple sclerosis?
DR. FRED LUBLIN, M.D., DIRECTOR, DICKINSON CTR. FOR MS AT MT. SINAI, NYC: Multiple sclerosis is a disease of the brain, and spinal cord and the optic nerves in which there's inflammation, white blood cells attack the insulation around the nerves in the brain, in the spinal cord and they also sometimes damage the underlying nerve fibers. This occurs as episodes, what we call attacks, flare-ups or exacerbations. Those are completely unpredictable. Over time they lead to disability of any sort that can occur with the brain where...
KING: It can occur in your legs, arms?
LUBLIN: Arms, legs, bladder, sexual function, cognition, depression, weakness.
KING: What does multiple mean?
LUBLIN: There's two aspects to multiple. One is that it occurs more than one time, what's called dissemination in time. The other it involves more than one area of the nervous system and that dissemination at space so the sclerosis is actually scarring and when you look, there's multiple scars in the (UNINTELLIGIBLE) system. KING: Let's go around the panel. Richard Cohen, when you wrote this book, "Blindsided," you wrote that you were hiding -- you had this for how many years?
RICHARD COHEN, TV JOURNALIST: Over 30 years. I was 25 when I was diagnosed, and it was a...
KING: Were you married to Meredith?
COHEN: No. And it was very much a mystery disease, not just to everybody else, but to me too. And for many years, it was a struggle. I struggled to make sense of it to myself. I kept it a secret. I thought it was threatening. I thought -- I was, you know, a rising television news producer. I thought it could be used against me, and...
KING: In retrospect, was that a mistake?
COHEN: No, in retrospect, I think that people have very narrow attitudes about illness. I think illness makes people uncomfortable. I think that potential employers run away from it, and I think whether we like it or not, self-preservation says keep your mouth shut.
KING: Meredith, did it affect your relationship? Falling in love with someone with MS?
MEREDITH VIEIRA, CO-HOST, "THE VIEW": I don't think so. I remember when he told me, we were out to dinner. There was something about Richard, he had a certain quality to him, a certain sadness. He's a really sarcastic kind of guy, which I found extremely attractive, but there was something that was a little bit off, and I broached it with him. And he just said you need to know that I have multiple sclerosis. I don't know if it is because my dad was a doctor and I grew up in -- I don't even know. But it didn't throw me. I liked the guy and I decided right then and there that's not going to be the issue. I didn't know that much about it.
KING: What's the worst effect of it on the partner?
VIEIRA: Well, there's a lot of effects on the partner. First, it's hard to see anybody going through some of the things that Richard has gone through. It's not just with MS, he's also had colon cancer which exacerbated the MS or the MS exacerbated it. And that's very hard to feel like you can't really do as much as you'd like to for them. But it's also difficult because you have a lot of emotions. I go through periods where I'm angry that he has this. I'm angry what it's done to our family. I'm frustrated by an illness where there is no cure.
KING: Do the children have it?
KING: Teri Garr, how did you know you had it?
TERI GARR, LIVING WITH MS FOR 22 YEARS: I got a diagnosis in '99. I didn't know what was wrong with me for many, many years. I was tripping and then it would go away. I had periods of time, as long as 10 years when I had no symptoms. I felt it was like a stye (ph) or something. Maybe it just went away. And then I'd get again symptoms and go again and try to find out what it was. I had doctors say, well, whatever -- something's going on there, but it's not MS. I went, OK, it's not that. So it was a very difficult diagnosis.
KING: How did they finally know what it was?
GARR: My doctor said, for want of a better word, now that we've got medicines out here that can help, let's put you on one of them and say we're treating MS. I think eventually they're going to find out that MS is like ten different things. I have a neurological disease something like MS, and it's MS, so let's take medicine for it.
KING: Why is it tough to diagnose, doctor? Or is it tough to diagnose?
LUBLIN: It can be. Sometimes it's very easy. Sometimes it's rather difficult because of the many different ways it can present. It can be extremely subtle, very mild, even fleeting.
KING: So his signs could be different from his.
LUBLIN: Every person presents uniquely.
KING: What did you notice first, Mark?
MARK BARONDESS, LARRY'S CLOSE FRIEND DIAGNOSED WITH MS 5 YEARS AGO: The trembling in my left hand. We were flying overseas and all of a sudden my hand started shaking. I immediately thought about Michael J. Fox. I thought maybe I have Parkinson's because I associated shaking with that.
KING: You couldn't control the shaking.
BARONDESS: Couldn't control the shaking. Next thing that happened was a loss of feeling on my left side. From there, a few other symptoms developed. It's a difficult thing sometimes to diagnose.
KING: How did they finally diagnose it?
BARONDESS: Through three processes. I did a series of tests. The two I remember most of course, the MRI where the doctors look for the scarring, sclerosis on the brain or in the spinal cord. And the second thing was the most uncomfortable experience I've ever had which was spinal tap, which demonstrated the presence of some abnormal proteins that is associated with the disease.
KING: Did you have that, Alan?
ALAN OSMOND, FMR. LEADER OF OSMOND BROTHERS LIVING WITH MS SOME 18 YEARS: I did.
KING: Alan Osmond, how did you find out? OSMOND: In our performing, I noticed I was playing the trumpet with my brothers and I couldn't move my fingers. It is my right side that I was affected and they call it primary progressive. It's where it starts very simple but then gradually and continually gets worse. I found myself also tripping on stage. I just couldn't -- I thought, oh, I must have tripped on something and I looked down and there was nothing there. It was my muscles and my fingers. It just kept getting a little bit worse, worse, worse as we went along.
KING: Does it kill you, doctor?
LUBLIN: No, not usually.
KING: You die with it?
LUBLIN: You die with it. It's a life-long disease. Its effects on longevity are minimal and now that we have therapy it's probably even less. KING: What's the end -- the worst result, crippling?
LUBLIN: The worst result is death, but that's uncommon, but severe disability, inability -- bedridden.
KING: You walk with a cane?
COHEN: I do.
KING: Is that part of the disease?
COHEN: Sure, sure. I think that's very common for people. Sooner or later it catches up. I used to think when I was in the news business that I was going to outrun it. I covered news all over the world and covered more and thought I was invulnerable and sort of put aside that diagnosis, but it does catch up to you.
KING: Lots more ahead. We'll be taking your calls as well. The subject multiple sclerosis. Don't go away.
(BEGIN VIDEO CLIP)
MONTEL WILLIAMS, DIAGNOSED WITH MS 1999: When I first was diagnosed, one of the things the doctors never told me was one of the primary symptoms especially in men is depression. And it comes with the illness. I didn't know that, Larry. And you know me, you've known me for 12 years. It wasn't until I had sunk into a depression for three months in a row that I tried to kill myself twice that I realized I need to go get some help.
(END VIDEO CLIP)
(BEGIN VIDEO CLIP)
BARBARA WALTERS: On a horrifying day in 1992, Cohen's illness almost killed his son Ben, he was then four. As the two stood on a train platform. When the train pulled in, father and son stepped on board. Then Ben said to his father, you dropped your I.D. card on the platform. And when Cohen went to pick it up, his son followed him off the train.
COHEN: It happened in an instant. I reached up sort of in the universal language of don't. I guess I accidentally pushed him back without realizing it and to my horror, he went down between the train and the platform onto the tracks.
(END VIDEO CLIP)
KING: That was Barbara Walters, a special they did on ABC about Richard.
How do you cope with something like that, Richard?
COHEN: Well, not easily. Not easily. Because my limitations played a role. I don't see well. My equilibrium is bad. We had to move quickly. And you know, any parent knows the choreography of keeping a child safe.
KING: You had to feel some guilt.
COHEN: Well, it gave me pause. I was afraid to be alone with him for a long time.
KING: Lets find out how each of our guest is treated.
Teri Garr, now, I know that you're a paid ambassador for MSLifeline's program funded by Serono and Pfizer.
Is there a special drug you use?
GARR: Yes, I take Rebif. I just recently had an MRI and I've had no new lesions. And I've been very, very lucky because I've had a very slow progression with this, if I've had it for 20 years, the M.S. And now it seems to have gone even slower because of the medicine I'm on. So I'm really very grateful. And I find it very important to keep an optimistic attitude and to -- I know it seems kind of Pollyanna, but I try to make the best of it and treat it like it's not that big of a deal. And in my case it isn't such a big deal.
KING: Any side effects from that drug?
GARR: For me there haven't been, no. I think some people might get site injection spots, but I've been really lucky. I haven't had any side effects.
KING: What do you take, Mark?
BARONDESS: Well, the medicine that I think -- I was on the same medicine as Teri for the last four years. And I just switched to the newest medicine that's available. I'm not going to get into what the names because I'm not a paid endorser or anything else. But it's different from the medicine that Teri takes, in that I take this medicine now once a month intravenously. And to me, the greatest thrill of my life is to no longer have to do shots three times a week into my body.
KING: You had to inject yourself?
BARONDESS: I injected by body, primarily in my stomach and in my legs. And let me tell you, after three years, it gets a little bit old.
KING: And Alan what do you take?
OSMOND: I used to take Copaxil. After a while I went on a study four or five years on that, and then they stopped it and said it wasn't doing me that much good. They had the proof. But I went to England, Larry, and I heard about something over there that I went over to check out. It's called Daval, D-A-V-A-L. And I went over and I went through a whole bunch of tests just to see if I could try it. And they let me try it. And I'm telling you, it worked. It did something positive for me. And I've met two or three people that are almost on remission now. One kid was totally bedridden, but now he's bought a boat and he sailed across the Atlantic.
KING: Is it up for approval here?
OSMOND: So there are things coming, but you can't get it here.
KING: You can't get it here.
OSMOND: That's my biggest...
KING: What do you take, Richard?
OSMOND: It's in England.
COHEN: I'm on the Rebif also, but I'm going on the same drug that...
KING: Your switching to what Mark is on. That's intravenously given?
COHEN: Yes, it's a monthly intravenous treatment.
KING: Doctor, how do you know what to give?
LUBLIN: We now have six different agents and we make a decision based on where in the course the disease the individual is, how severe the disease is, what the course has been and what their individual preferences are and what they can tolerate. These all have a cost, whether it be injections under the skin or into the muscle or intravenously. So, none of them are a pill yet.
KING: You have to live with that right Meredith, when he's injecting himself.
VIEIRA: Yes, absolutely. Well, we -- I sort of agree with Teri. We are constantly optimistic. And I don't want to belittle the experience, but we sit around, and we'll each have a drink and he'll gives himself a shot and we joke about it. (CROSSTALK)
VIEIRA: It's our happy little gathering. But we just...
KING: The M.S. family...
(CROSSTALK) VIEIRA: Then we have another drink. No. We've incorporated it into our -- I mean, it is part of our life. So, you can sit there and go, oh, woe is me or you just sort of. The kids have seen Richard inject.
KING: The depression is widespread, Doctor?
LUBLIN: It's fairly common...
KING: Multiple Sclerosis patients have it more than other patients of other diseases.
LUBLIN: More than other chronic diseases.
KING: What would the reason be you think?
LUBLIN: We don't know. But it's a disease of the nervous system, and so it's very possible that it's impacting the brain in ways that lead to depression.
KING: How bad does it get, Mark?
BARONDESS: It can get pretty bad. And there's not question. I know, that doctor, you know down at Hopkins, the works that's being done down there is particularly with regard to the issues of depression. It is the disease -- Multiple Sclerosis is a disease that affects the brain. The brain is what controls our emotions. And one has to think that if your brain is being scarred, that it's going to affect you.
KING: Do they give you antidepressants?
BARONDESS: Sure they give you antidepressants. And you know, another side effects of some of the medicine that some of people on the panel are taking and that I took before is depression. You can read in the literature. I mean, this medicine, it's tough enough to deal with the disease, but the medicine can actually aggravate it in addition to your underlying condition.
KING: Teri, how do you have hope?
GARR: I just do. I'm just made that way. I think I was born that way. You know, being in show business and being rejected so much from the get go, you know, starting out being an actress, I always had hope. No, I'm going to do this. I'm going to make it. And I -- it's just been a mind set that I have, and when I got this diagnosis that I have M.S., I go, well, it's not going to be so bad. I'm going to handle it like it's a bump in the road. And there's always going to be somebody worse off than me. And if I try to help other people, I'm going to feel better. And you know, all those things have been true.
KING: How important is the attitude, doctor?
LUBLIN: Very important.
KING: It can't physically affect the disease, can it? LUBLIN: Not likely. But, you've got to live your life with this disease. And since it doesn't shorten your mortality, it's your whole life. So this kind of attitude is wonderful.
KING: By the way, there's an organization, helpingpatients.org. What do they do?
BARONDESS: Helpingpatients.org is really a -- it's a combination of the major pharmaceutical manufacturers and the organization has set up a Web site in order that if someone wants to get treatment for -- it's really for any disease, not just M.S,. but for any medicine, you can go to that Web site and you can find out information as to how you can qualify for patient assistance programs. The idea being that no patient in America what so ever should not receive the high-quality medicine that are available because of cost.
KING: That's helpingpatients.org and their phone number is 800- 762-4636.
How expensive is this, Meredith?
VIEIRA: I don't know anything about that organization? I know nothing about it.
KING: How expense are the drugs?
VIEIRA: The drugs are...
COHEN: Well, the drugs that I'm about to take are about $3,000 a month.
VIEIRA: But he's worth it.
KING: Does the pharmaceutical spend a lot on Multiple Sclerosis?
How many people have Multiple Sclerosis?
LUBLIN: In the United States, 500,000, maybe two and half million worldwide.
BARONDESS: See, Larry, that's a number that I would disagree with, only as so far as the Montel Williams M.S. Foundation two years ago did a study on this, and we paid Gallop to do a completely clandestine study to find out what is the actual number. And the number came back over a million people domestically with M.S. and the numbers probably much greater than that.
KING: Why are they under counted then? I mean, if your figures are wrong, why are they wrong? LUBLIN: I don't know, so I can't answer. I haven't seen the data.
COHEN: I think they're under reported. I think some people don't go to the doctor and some people don't recognize the problems.
VIEIRA: Or misdiagnosed maybe, as Teri said.
BARONDESS: People don't know they have it. And there seems to be some reluctance to increase that number, and it's very bothersome. I think anyone in the audience knows someone that has M.S.
KING: Teri, is there pain involved?
GARR: Not for me there isn't. I think, maybe for other people there are. As I said, I've been very lucky. I'm wondering if they haven't reported all the people with M.S., because if all of the cases of M.S. were reported, the government would have to step in and give more financial aid to us.
Do you think that's a reason?
LUBLIN: I wouldn't have thought that. We'd be delighted to have the number accurately assessed. I mean, we're there to take care of patients. In fact, you started to ask this, there's an enormous amount of interest amongst the pharmaceutical companies in this disease, and just about every major pharmaceutical company and dozens of biotech companies are doing research in MS.
KING: So they wouldn't be doing that if it were a minor disease?
LUBLIN: That's right.
KING: Let me get a break and come back. We'll go to calls at the bottom of the hour. Our subject is multiple sclerosis. Don't go away.
(BEGIN VIDEO CLIP)
ANNETTE FUNICELLO, DIAGNOSED WITH MS, 1987: I was feeling strange little things. Numbness. I used to think I slept on my arm wrong. My equilibrium was strange. You know, I couldn't walk on the sand. My eyesight was deteriorating. It really was. So I found out the latter part of '87, and it threw me. You know, it really threw me, because I've always been so healthy.
(END VIDEO CLIP)
KING: We're back. Dr. Lublin, does this affect more men than women? LUBLIN: No, it affects women almost twice as frequently as men.
KING: Any -- and more Caucasians than non-Caucasians?
LUBLIN: Caucasians more than any other race.
KING: Anything -- a difference in race, I mean, with regard to, like Jews get it less?
LUBLIN: No, it's primarily a disease of northern Europeans and North American Caucasians. KING: You don't see it much in the Asian nations?
LUBLIN: Very little.
KING: Any thought as to why?
LUBLIN: There is a genetic element to the illness, and we think that's the main reason why. Although now that technology is spreading, we're seeing more of it in the Middle East and Asia and other areas where we didn't see it before.
KING: Any homeopathic treatments?
LUBLIN: None that I know of that have been shown to be effective.
KING: Have you seen anyone, if not cured, where it completely goes in remission?
KING: For long periods of time?
KING: And how do you explain that? Why did they go in remission?
LUBLIN: This is one of the mysteries of multiple sclerosis. It can go into remission for decades.
KING: You're kidding?
LUBLIN: No. And then pop up again in 60s, 70s. It's a very strange illness, and it behaves differently in every person.
KING: Allen, what's the worst thing about it for you?
OSMOND: Well, not being able to perform with my brothers, but I took the attitude -- and I believe what Teri said -- I really admire her, and also Annette Funicello. She's the one that helped me right at first. Because I, you know, I said, what do I do? Because the press ran out about, they're going to make my life look like I'm dying. And I decided way back then, I have MS, but MS does not have me. And so she told me come out to the press, and I did. And I think the attitude approach to it is one of the better things that's helped me along. My wife loves me and I know that. And that really helps to have family support.
KING: Richard, are you legally blind?
COHEN: Yes. I have had optic neuritis in both eyes, and I used to...
KING: Can you see me?
COHEN: I can see the shape of you, a little bit of detail. The further I am from anybody or anything, the less I see. I used to joke with my CBS colleagues that I was the only blind television news producer in the business.
KING: One of the reasons you succeeded, probably. Does it have anything to do with MS?
COHEN: Oh, it has everything to do with MS.
COHEN: Yeah, oh, yeah, optic neuritis.
KING: Is that the worst thing about it for you, then?
COHEN: Well, it is, because losing eyesight really redefines a life.
KING: What's the worst thing for you, Mark?
BARONDESS: The worst thing for me was that it took away my ability to be a trial lawyer. The fatigue, the forgetfulness, the slurring of my speech.
KING: Forgetfulness comes in?
BARONDESS: Forgetfulness, it affects MS...
KING: So you couldn't go into a long trial?
BARONDESS: Well, I started asking questions -- I'll never forget -- I was asking an orthopedic surgeon some questions on the stand, and suddenly I forgot what I was asking him about. And the judge said, are you OK? And then I started making math errors in court. And my doctor said, look, if you keep doing this, you're going to be sued for malpractice.
KING: So what can you do legally now?
BARONDESS: Well, legally right now, I don't go into court anymore. I can advise people what to do in court.
KING: You're of counsel in Bob Shapiro's firm, right?
BARONDESS: I'm of counsel at Christensen, Miller, a great, great firm.
KING: But you can't go into court.
BARONDESS: I don't go into court. I've been very tempted to go into court, but I just can't do it, because I can't risk the harm that might come to a client because I might forget.
KING: You're writing a book about marriage, right?
BARONDESS: Writing a book, it's coming out this spring, called "What Were You Thinking?" Which kind of brings back everything that I learned during the last 20 years and answers that seminal question, what were you thinking? KING: Teri, what's the worst thing about it for you?
GARR: The worst thing? I don't even focus on what could be the worst thing. Let me think. You know, I think the worst thing for me is how -- sometimes how other people treat me, is the worst thing for me, because I was in a place once and a woman came up to me and said, oh, you poor thing. You know, first of all, she called me a thing. And she said my heart bleeds for you. And I said my heart bleeds for you, too, honey, because you're an idiot. And someday they may cure MS, but the idiot thing, it gets in there and they can't get it out.
KING: OK, what's the hardest thing for you, Meredith?
VIEIRA: Well, probably that he's still legally blind and he still beats me in pool. That really -- that really ticks me off.
KING: What is the most difficult?
VIEIRA: I think it's on the days when I see Richard down on himself and seeing himself as in some way diminished. I think for me, as a spouse, that's extremely hard.
KING: How many children do you have?
VIEIRA: We have three.
KING: What's the hardest for them?
COHEN: I think that they've -- they're at peace with it to some extent. You know, it's -- we're very open with them. We're not keeping any secrets from them. I think there's a security in that for them. And they're really good soldiers.
KING: We'll take a break and be back. We'll start to include your phone calls, we'll Reintroduce the panel too. Don't go away.
(BEGIN VIDEO CLIP)
KING: When, Richard, did this multiple sclerosis come on?
RICHARD PRYOR, DIAGNOSED WITH MS 1986: I think it came on in '86. KING: Did it have anything to do with your hectic lifestyle, or is it just luck of the draw?
PRYOR: The doctors said what you said, the luck of the draw.
KING: So it had nothing to do with the fact that you had drug problems or anything like that?
PRYOR: Nothing, but I prayed that it don't. I said, please, God, don't let this be it.
(END VIDEO CLIP)
(COMMERCIAL BREAK) KING: We're back. We hope this program is helpful to you tonight. Let's meet our guests. Meredith Vieira is co-host of "The View." Host of the weekday version of "Who Wants To Be a Millionaire," Emmy- winning TV journalist, veteran of ABC and CBS News and the wife of Richard Cohen who has been living with MS for three decades since age 25. He's the author of the "New York Times" bestseller "Blindsided, A Reluctant Memoir." There you see its cover now. Out in paperback including a new afterword. He's an Emmy- winning TV journalist as well.
In Los Angeles is Teri Garr. Academy Award-nominated actress. In October of 2002 she appeared on this program to confirm that she had multiple sclerosis. In 2004, the National MS Society named her as its first national chair for their Women Against MS program. She's a paid ambassador for the MS Lifelines program funded by Serono and Pfizer.
In Salt Lake City, Alan Osmond, living with MS, leader of the hit singing group, The Osmond Brothers and co-founder of the One Heart Foundation dedicated to strengthening families.
In New York, Mark Barondess has MS, he's an attorney and is general counsel for the Montel Williams MS Foundation and our own Larry King Cardiac Foundation and also in New York is Dr. Fred Lublin. He's director of the Corinne Goldsmith Dickinson Center for multiple sclerosis at Mount Sinai. He's a neuroimmunologist with over 25 years of work on MS and a member of the National Multiple Sclerosis Societies board of directors.
We're going to go to your calls. Norfolk, Virginia, hello.
CALLER: I have systemic lupus and my first cousin has MS. Are there DNA links between these two diseases?
KING: Dr. Lublin?
LUBLIN: We don't know if there's DNA links but it's not uncommon for us to see in the family of patients with multiple sclerosis, other autoimmune diseases like lupus and rheumatoid arthritis.
KING: Do we know why Richard has it and I don't?
LUBLIN: Not entirely. We know that there's a genetic element. There's a not very well defined environmental element. And mostly it's bad luck.
KING: Bad luck. If there's a genetic element, does he have to worry about his children?
LUBLIN: Minimally. The chances of a child of an individual with MS developing MS are a three to five percent which means 95 percent to 97 percent chance against.
KING: Do they show any signs of any illness?
KING: So life isn't fair. Wichita, Kansas.
CALLER: That was my question. My mom has MS and I was wondering what the probability of me developing MS would be or anybody in my family.
KING: Not highly probable.
LUBLIN: But higher than the general population by 20 times. The general population is 1 in 1,000, but it's still a low percentage.
KING: You worry about your kids?
BARONDESS: Of course I do.
KING: But there's nothing you can do, right?
BARONDESS: As a matter of fact, I think there's some sort of a test out there now where you can genetically look and see whether or not your children have more of a probability. I don't want to find out.
KING: Richard, do you want to say something?
COHEN: Yes, I was going to say that Harvard and MIT are mounting an international consortium to really study and discover the genetic construction of MS. I think it's a very important project. They think they can have some answers within two years and makes me somewhat hopeful.
KING: Are we going to learn a lot from stem cells, doctor?
LUBLIN: We hope so. It's our best shot now in looking at repair of the damaged nervous system including the damage from multiple sclerosis. In five years, maybe we'll be looking at something else, but right now, stem cell offers us the best hope.
KING: When you study someone, can you know when the damage began?
LUBLIN: Usually not, however, you can find as they go along in the course of the disease when they have new episodes going on, both clinically and using MRI scanning. Most commonly when we see someone, we'll see evidence of scarring and we can't date it but we suspect it goes back in time.
KING: What was it like to inject yourself?
BARONDESS: I didn't have a glass of wine and enjoy it. To me, it was like getting a bee sting.
VIEIRA: We're a little kinky.
KING: Teri, do you still inject yourself?
GARR: Yes, three times a week. I don't mind it. I'm used to it. It could be worse. I think they call it a pediatric needle. So it doesn't really hurt that much. And I figure the alternative is that I wouldn't be getting any help at all. It's not that bad.
KING: Alan, what do you do? Do you take a needle, too?
OSMOND: I'm taking just pills right now. I used to take shots every day. You get used to it. Right now I'm trying to keep a positive attitude. Deal with things like my sugars and my blood balances and get my heart working. Exercise. I try to stay as active as possible. The hard thing was when I had it is I couldn't hold my little grandbabies. My right arm wouldn't work. I'm trying to stay as active as possible and dedicate most of my time to helping others.
KING: Your hands and feet look fine. What was the last problem you had physically?
BARONDESS: The last problem I had was severe vertigo. Right now as I'm sitting here I have no feeling in my left side in terms of my feet. Walking over here tonight I was dizzy, but you learn...
KING: You get used to it.
BARONDESS: You get used to it. The one thing I would tell people is that as far as diseases go, MS is a good disease to have because you have all these brilliant doctors that are working.
KING: Oh, it's wonderful.
BARONDESS: Seriously, they are working their hardest to find a solution to this. There are six medicines to treat this disease. We're far better off than a lot of people.
KING: You're happy with the pharmaceutical industry.
BARONDESS: I think it's the answer, along with the private sector to find cures and treatments for this.
KING: Mendocino, California, hello.
CALLER: Hi, Larry. Thank God for your whole panel. I was diagnosed in '97. Since the drugs for MS are so expensive, what options are out there financially?
BARONDESS: The best thing to do is to speak with your doctor, find out what programs are available, go to Helpingpatients.org, which is easily ascertained on the Web site. There is no patient in the United States of American that should not be receiving medicine. There are new benefits under the Medicare law that just passed so that the most any patient would have to spend in any year for this medicine even though it's $3,000 a month would be $3,000 in an entire year. Don't not take the medicine because you think you can't afford it.
KING: Laughter good for this?
LUBLIN: Absolutely. Almost as good as the glass of wine with the injection.
KING: You can mentally affect this disease by your attitude.
LUBLIN: You can mentally affect how you feel with the disease. I don't think it will affect the underlying course of the disease. But certainly how you live with it and how you adjust to it.
KING: Key question, do you expect to see this disease cured, really?
LUBLIN: Yes. It's a very difficult disease. It's surprised us with its complexity. Every time we learn something, 20 new questions come up. But yes, I do expect we'll a handle on it and cure it.
KING: When was it discovered?
LUBLIN: It was described clinically by a French neurologist by name of Charceau (ph) in the mid 1800s.
KING: So in the 1700s they would have called it something else?
LUBLIN: They would have called it something else.
KING: To Fort Wayne, Indiana, hello.
CALLER: Hi. My question is I feel I may have symptoms of MS. Who should I go to to be tested? A neurologist, a specialist or what?
LUBLIN: A neurologist.
KING: What will he or she do?
LUBLIN: He or she will take a careful history and do a neurological examination and based on that will order appropriate testing if it's indicated.
KING: Didn't they fear that you might have had Lou Gehrig's Disease?
BARONDESS: Yes, I was laying on the table getting an EMG where they stick needles in you and shock you to test your response time.
KING: Lou Gehrig's is -- what's that called, Lou Gehrig's Disease?
LUBLIN: Amyotrophic lateral sclerosis, ALS.
KING: Is that in the sclerosis field? Obviously, you've got sclerosis.
LUBLIN: They share the word sclerosis, but nothing else. They're entirely different diseases.
BARONDESS: Just like I said, this is a good disease to have. ALS is a very, very bad disease to have.
KING: You don't live with ALS.
BARONDESS: You don't live.
KING: Did you have a fear it was ALS, Richard?
COHEN: No, I didn't. But I was so young. And it was all such a mystery, that I didn't have any clue what it could be.
KING: Is 25 young to get it, doctor?
LUBLIN: The average age is 32.
LUBLIN: Yeah. So it's a disease of young adults.
KING: We'll be right back with more, more of your phone calls. Don't go away.
(BEGIN VIDEO CLIP)
MONTEL WILLIAMS, DIAGNOSED WITH MS, 1999: MS is so insidious, because there are about a million and a half of us who suffer from this disease here in America alone. But I will bet you that we all may have even though just a few symptoms that may be the same; almost all of us have different ones. With me, it's extreme neuralgic pain, nerve pain, in my lower extremities, from my knees down to my feet. And it's 24 hours a day.
KING: You're having pain now?
WILLIAMS: Right this second. Twenty-four hours a day, every day of the week.
(END VIDEO CLIP)
KING: This drug knows no economic barriers, hindrances, either. Nancy Davis, a good friend of ours, son of the late Marvin Davis, a billionaire, has it, right?
KING: And she has (UNINTELLIGIBLE).
BARONDESS: She has the Race to Erase MS, it's the Center Without Walls, which is a conglomeration of some of the best hospitals in the country. And the key to admission is that everybody has to share their information so that the cure is ultimately found. And it's a wonderful organization.
KING: How do you keep up, like, if a doctor in France is working on it, he makes a step ahead of a doctor in London, how do they share it?
LUBLIN: It's a fairly small community. And we keep in touch. We know what's happening when we're talking (UNINTELLIGIBLE). You don't like it, but e-mail works very well for these sort of things. But when something really important happens, then it gets scrutinized and published in good medical journals.
KING: What would you call the most major advance since you've been in the field?
LUBLIN: The advent of therapies. Twelve years ago, we had no treatments.
KING: No treatments?
LUBLIN: No treatments. First one was we found out about in January of 1993.
KING: That's a little over 10 years.
KING: Staten Island, New York, hello.
CALLER: Hi there.
CALLER: I've had MS for 17 years, and I was just wondering, it's a question for the doctor, I'm wondering how long that he thinks before they find a cure or a treatment?
KING: Well, they have a treatment, right?
LUBLIN: We have six treatments right now, and so there should be one for most, not all, but most forms of MS. But she needs to take that up with her neurologist. The cure, I'm hoping the not too distant future.
KING: Will there ever be a preventative?
LUBLIN: Yes, and that's even more likely -- well, that's sort of a cure, at least it would stop the disease in its tracks. That would be good.
KING: Like polio was cured by preventing it.
LUBLIN: Well, OK, yes, yes. But then you'd have to -- then we'd have to know who to give it to. See, polio was pretty easy. It was such a broad expanse of individuals at risk that you treated every child. Here, that may not be the case. But with the genetic studies that Richard was talking about, we may be able to identify the at-risk individuals and then employ a preventive therapy.
KING: Did you tell your children about it right away, Meredith? VIEIRA: No, we didn't. Actually, Richard -- for Richard, it's been a real progress in dealing with the illness. When I first met him, he really didn't talk about it at all. I mean, he'd tell me...
VIEIRA: He dealt with it pretty much with denial, I think, and we had not told the kids. And then when our oldest son, Ben, was about to be 16 when he was 6 or 7, I was sitting alone with him in his room, as I often do, just kind of rubbing his back and talking to him when I went to sleep, he suddenly said, am I going to end up like dad? And there was something in his voice that made me think -- and Richard was asleep -- I need to deal with this now. I need to give it a name, I need to just take that bug-a-boo thing out of his head and help him.
KING: Teri, do you have children?
GARR: Yes, I do.
KING: Discuss it with them?
GARR: Yes. She's wonderful with me. You know, I recently saw the movie "Ray" about Ray Charles, and there's a scene in there where he falls down and the mother -- and he goes mommy, mommy, and she just doesn't help him. And she says, I want you to be independent and I don't want anyone to treat you like a cripple. And he had to learn the hard way. And I've fallen down before, and my Molly will say, mom, did you hit your head? I say, no. She goes, well, then get up and just go. So she's got that same, instinctively that attitude also. So I think in this disease, which is so different for every person, having a good attitude like that and being strong, dealing with it, is really helpful.
KING: How about your kids? What?
VIEIRA: (UNINTELLIGIBLE). It's a disease of the family. And people should appreciate that.
OSMOND: I got a bunch of them out there. I've got eight sons and we're expecting our eighth grandchild, and that's the most important thing. And I think you stay involved with your family, you be open and you be honest with them. And also, I got on the Internet, and that's why I got on with TheFamily.com to share those things with people, and with our charity, One Heart, because if I'm going to make the journey, I might as well enjoy the ride the best I can. I am not happy I have MS, but I'm a happy man because my family and other -- the people that are around me. And I think by being positive, is the best thing I can say. I've heard it through all these other guests who you've had on the show too, that's the best thing that's helping me.
KING: Do you discuss it with your kids, Mark?
BARONDESS: I discuss it with my kids. My kids are now 14 and almost 16, so they know that memory is one of the factors that affects me. So it's, like, dad, don't you remember that you said that we were going to do this? Dad, that I was going to get a laptop tomorrow? KING: Do they worry about getting it?
BARONDESS: I don't think they're worried about getting it. They don't like it when they see me tired or if I have to stop, and say, wait a minute, I'm dizzy. You know, that's uncomfortable. But I got to tell you, my son Alec, who just was bar-mitzvahed, he took a portion of his bar mitzvah proceeds and donated that to the Montel Williams MS Foundation.
KING: Somerset, New Jersey, hello.
CALLER: Hi, Larry. Hello, panel. My question is for the doctor. Has medical research discovered any cause for MS? And if not, what is the strongest theory?
LUBLIN: So we don't know for certain what the cause is. The strongest theory is that this is an autoimmmune disorder, where your body's immune system turns on itself and attacks one of your organs -- in this case, the brain and spinal cord. Sometimes the immune system attacks the thyroid or the intestines. But we think that's what's going on. We know that there are immunologic abnormalities in individuals with MS. They haven't proven that it's autoimmune. It's still possible that it could be and as yet unidentified microorganism, a bug, but we haven't shown that yet either.
KING: Do you guess there was any connection with MS and Richard getting colon cancer?
LUBLIN: No connection we know of.
KING: Could diet help in this?
LUBLIN: There's lots of diets out there. None that have been shown to be of real value. I tell people, a healthy diet is good for them, and if they live in New York, I tell them the hot dog diet.
KING: Exercise good?
LUBLIN: Exercise is very good.
KING: We'll be right back with our remaining moments. Don't go away.
(BEGIN VIDEO CLIP)
UNIDENTIFIED MALE: (UNINTELLIGIBLE) you continue to be an inspiration to a lot of people, especially people who have MS. (UNINTELLIGIBLE)?
FUNICELLO: If I can help anybody, it's my pleasure. If I can make someone happy, I'm so thrilled.
(END VIDEO CLIP)
KING: Scottsdale, Arizona, hello.
CALLER: Yes, hello. Thank you for taking the call.
CALLER: My husband has had Multiple Sclerosis for 30 years. And though that time, he's lost about 40 pounds. Is this typical to the disease?
LUBLIN: It's not. Usually...
KING: Weight gain or loss has nothing to do...
LUBLIN: Weight gain or weight loss. Sometimes you'll see weight gain for some of the medications. If someone is on steroids for a short period of time. Weight loss is very uncommon.
KING: Have you gained weight with this, Mark or lost?
BARONDESS: I haven't lost it.
KING: Alan, have you noticed weight changes?
OSMOND: I that think because of lack of exercise, there's that tendency, and you have to work at it. To get out and walk and do exercise as much exercise as you can. But I -- I think you can. You can sit back and behind and get lazy. You've got to push yourself.
KING: Richard, any weight?
COHEN: I push myself to go to the gym about three times a week, and I'm pretty on that.
KING: With the cane and everything, what can you do?
COHEN: I can do aerobic exercise.
COHEN: I do the bike, I do an elliptical machine, abdominals.
KING: Teri, what do you do?
GARR: I do Pilates a lot. And I don't do a lot of cardiovascular stuff. And I have an enormous fondness for delicious food. It's very comforting.
KING: Chicago, hello.
CALLER: Hello, hi. Yes, thank you. I have a question for the doctor. My dad was diagnosed with M.S. in his early 60s. So, he's been struggling with this for a few years. He's tried all the therapies that I've heard mentioned, the shots and everything. The doctor is going to attempt an implant to give him medication on an ongoing basis. I was wondering if the doctor could give me some more information about that. LUBLIN: I suspect that the implant is what called a Baclofen pump. And it's medication that's put into a pump, that then has a little tube that's -- goes into the spinal canal and injects this medication, Baclofen, directly into the spinal canal. So it bathes the spinal nerves of the spinal cord and lessens spasticity, which could be a significant disabling problem.
LUBLIN: No, it's a readily available therapy.
KING: You've lived with it this long, Richard. Do you -- can you be optimistic?
COHEN: I actually have no real hope for a cure in my lifetime. I don't look for something that's going to change my look -- life. I'm very optimistic about research, such as this genetic research for future generations. My life is great. I have no complaints. I'm more concerned with future generations.
KING: What does the Multiple Sclerosis Society do?
LUBLIN: The National Multiple Sclerosis Society provides services for patients all over the country and in addition funds 35 millions dollars worth of research a year in Multiple Sclerosis.
KING: You work with -- you're on the board, right?
LUBLIN: I'm on the board.
KING: And for that's helpingpatients, it's helpingpatients.org or you can call 1-800-762-4636. We only have about 40 seconds left.
Are you hopeful?
BARONDESS: I'm very hopeful. We have great doctors. The pharmaceutical comes are out there doing the research. I think that -- I think Richard is going to be wrong. I think they're going to find it within his lifetime.
KING: Now, Meredith, you are the one here without it, except for the doctor, are you hopeful?
VIEIRA: I'm always hopeful about everything, but I'm also realistic. I mean, we're renovating our house right now, and I made a choice that I wanted to put an elevator in it. I wanted Richard to have full access to both floors of our house, if a day comes when he needs that. But I don't look at this half empty, the glass. Really, I look at it as half full. We really, as Richard said, I have a great, great life and so does he. And we have wonderful kids and we're blessed.
KING: Richard's book is "Blindsided; Living a Life Above -- Lifting a Life Above Illness." It's was a "New York Times" best seller. Has a new afterwards by the author, and is now published in paper back. I want to thank Meredith Vieira, Richard Cohen, Teri Garr, Alan Osmond, Mark Barondess, And Dr. Fred Lublin.
The phone number for helpingpatients is -- it's helpingpatients.org or 1-800-762-4636. And, of course, the National Multiple Sclerosis Society.
And I'll be back in two minutes and tell you about tomorrow night. Don't go away.
KING: Tomorrow night, the man who replaced Bob Hope has head of the USO, Wayne Newton will be our special guest.
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